tag:blogger.com,1999:blog-92212758000761745552024-03-12T19:00:44.910-07:00Keep on DancingRebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.comBlogger141125tag:blogger.com,1999:blog-9221275800076174555.post-60623678042402627952020-03-03T11:01:00.005-08:002020-03-03T11:16:18.975-08:00Soldier on
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I felt a familiar dread on Sunday night. It was going to be one
of those weeks. The appointments have snuck up on me. She has 4 extra appointments
outside the usual 3, plus school. Not to mention the trip to Salt Lake City (for
Shriners and some fun), work, basketball games, haircuts… <br>
<br>I’m worried about Keira. She has some symptoms
that have taken me on what Seems to be a wild goose chase. A whole lot of tests
for what I’m guessing will be the MD’s equivalent of a shrug (They use a lot
more words.). <span style="mso-spacerun: yes;"> </span><br><br>
Jeff might be worried, too. After all, last night he dreamed
Keira was a refrigerator.<br><br>
Flipping lazily through my phone Sunday night, I came upon
this t-shirt. Jeff and I both laughed.<div><br>
<img id="id_52a1_c1ad_5d8c_7b84" src="https://lh6.googleusercontent.com/ZW2-JlppWo1szhqe3TV_KwkuHTe-q_r9ODf3fQYt_MMoAwCbT1VOvcs-okB1-oY" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br>
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In preparation for a talk I plan to give on anticipatory grief
and coping for families like ours, I’ve recently discovered that the particular
grief of parents with medically fragile children has not been well studied. Experts
on PTSD, however, have shed some light on these families by comparing them to
soldiers in combat. The “trauma”, or at the very least, the intense anxiety that
these parents feel on an ongoing basis serves the purpose of keeping them alert
and ready for the next inevitable, albeit unpredictable crisis. For soldiers,
and in many ways parents, the hypervigilance, sleeplessness, planning, and advocating
(fighting), is a fact of life. For soldiers, standard treatment for anxiety is often
contraindicated. Their state of being comes at a high cost to their emotional
and physical health, but it helps ensure the safety of those around them. I’m
not a soldier. Or a superhero. Just a mom trying to get through. And so it
continues.<br><br>
I drew this today. When I get into these moods, I often
wonder if I could organize and galvanize my thoughts by illustrating the issues
in picture form. This one makes more sense than most I’ve tried before. It
shows what I’ve been managing for K during the past week. When I
finished drawing all the connecting lines, I handed it to Jeff and said, “This
is my tight shipwreck.”</div><div><br>
<img id="id_5c43_7f46_53c8_1e99" src="https://lh4.googleusercontent.com/86lMRU1HKinsGrViHr4WYlJJBx2f3QoLDd_sU6DXP35o34hjm2pzQdsczJne0Z0" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br>
As usual, Keira is ok. Today she correctly identified the
requested color two out of two times, ate a piece of cheese the size of my
little finger, got poked for her baclofen pump refill with nary a flinch, and
smiled at a baby in the elevator. All the while worrying me with her
increasingly glassy stare, flushed cheeks, and stuffy nose. <div><br>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><div><img id="id_9b6a_aac9_7b46_79e9" src="https://lh3.googleusercontent.com/dSAuWoHXSkkP_XI0_IR7ELVT7KhN52c4b14erdyGL5ZsXmof4HmJg9gwzt-2ZE0" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div></div></div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-19039305693423337942020-01-24T17:27:00.001-08:002020-01-24T17:27:42.988-08:00Keira's Christmas Showcase<div class="separator" style="clear: both; text-align: left;">
We were looking forward to this years "Christmas Showcase" more than ever. Last year, we opted to have Keira participate, but we weren't sure whether she'd enjoy herself or steal the show by retching and vomitting. I'd hung a small string of lights across the tray on her chair. By pushing a button, she was able to make the lights flicker on and off, giving her a "part" while the other children sang. It turns out she was delighted. Not only did she enjoy herself, she held up her arm and stuck out her tongue. <i>More please! I want to play! What else can I do?</i> </div>
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More excited this time around, I found a longer strand of lights and wove them through Keira's chair so that they could stay put for the remainder of the season. The video shows her proudly trying them out. They are attached to the yellow button by her head and stay on for as long as she is holding the button down. </div>
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At the showcase, the kids had to arrive 30 minutes early. I figured I'd stay with Keira, since volunteers sometimes look like fish out of water if they aren't familiar with her. I wheeled Keira into a classroom, where a few kids had already arrived and were quietly coloring at a table. Immediately, I hear, "Keira's here!" and before I know it, Annie has taken Keira from me and pushed her chair over to the other kids! Slightly taken aback, I count my blessings and remove myself to go find a good seat in the sanctuary. </div>
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I take a seat with Jeff and the boys, where I sit semi-anxiously, worried that we've sat too far back, where it will be too obvious if and when I have to swoop into the performance to help Keira out. </div>
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The kids enter the sanctuary. The "big" kids (kindergarten-6th grade) sit near the front to watch the preschoolers perform and await their turn. Annie wheels Keira up to the edge of the pew next to a row of girls and sits down next to her. It isn't long before I can hear Keira squealing with laughter. It makes my heart so happy. But she keeps getting louder. She'll quiet down when the music starts, I hope. A couple of girls ask the children's' pastor if they can sit on the floor next to Keira and she approves. Keira and a group of 4 or 5 other kids. Just giggling and laughing. </div>
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The program begins. The congregation sings. The preschoolers do their part. And all throughout, the music is punctuated by Keira's happy squeals. I turn to Jeff, "Should we go tell her to be quiet?" We are actually talking about reprimanding our daughter! "Just let her be," he says. </div>
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It's transition time and the big kids go up on the platform and find their places on the risers. Liam and Jeff hoist Keira in her chair up onto the platform, right up next to the risers. The children begin to sing. Keira cranes her neck, looking to see her friends who are standing next to her, but up on the top step. She looks adoringly at her friends, then brings her head down to smack her lights on and off with gusto. Off and on. On and off. Watching her friends. She can't get enough of this. She seems completely comfortable up there. Like being on stage, she's in her element. I couldn't be more proud. </div>
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The show is over. A merciful sub-60 minute showcase. No sooner than Jeff and Liam carried Keira off the platform, had her friends run up to Jeff, "Can Keira come with us?" Of course!</div>
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There is a cookie reception and as we join our church family in the reception hall, I flit from one conversation to the next, greeting old friends and new. I am scarcely aware of Keira's presence in the room somewhere. Not much more than I'm aware of Liam and Ronin. </div>
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You know how it is. Your kids are comfortable enough with the community, and you are comfortable enough with the community, to loosen the tether and let them range free a bit. You enjoy the moments where they are entertaining themselves, making their own fun. You just hope that their unsupervised cookie eating won't result in some late-night carpet cleaning for you. </div>
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So though I wasn't with Keira, I was relishing this moment for us. And for her. The girls pushed Keira through the line as they got their refreshments and sat her up close to them at the table while they sipped hot chocolate and nibbled cookies and demonstrated for the 27th time how they could make their skirts twirl. When I finally went to check on Keira, she was happy and relaxed, continuing to display her lights whenever they were mentioned. </div>
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I am so happy because she is so happy. I'm so grateful that she can have a real, fun, Christmas pageant experience with other kids her age. Heck. She's enjoying this more than either of her brothers ever did. I'm so proud of the other kids. I'm proud of Keira. Love is a beautiful thing. The fact that you can be just as proud of your kid who pushes a button with her head as you can be for your kid who sings in the choir or the one who has a lead role in the skit. </div>
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<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">At home that night, Keira, exhausted, is tucked into bed. The boys are back at their games. In the living room, I perch on the arm of the couch next to Jeff. "That," I say, "That is what life is all about." </span></div>
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<br />Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-42158733919750753512019-11-12T16:10:00.001-08:002019-11-12T16:11:05.747-08:00BraveryThis girl is the epitome of bravery. Strength and courage in the face of scary things. <div><br></div><div>Today is surgery number...wait, let me count them...11. </div><div>Sedation number 14.</div><div><br></div><div>In some ways, a procedure like this is less nerve wracking as parents than it used to be. Trouble breathing and hospital admission are no longer inevitable. In other ways, it’s more nerve wracking than it used to be. Keira has come to show us that there is so much she understands and in her own way, she is a better communicator. That means she has the ability to understand in advance, to some degree, what is going to happen and in return feel anxious about it. It’s when she gets really upset that we are reminded like a punch in the gut how fragile she really is. </div><div><br></div><div>Bless her heart. This is how our morning went. </div><div><br></div><div>4:50 am: We wake her up and change her diaper. She gets to stay in her PJs. No food or drink allowed, so thank goodness it’s far too early for her normal breakfast anyhow. We load her up in the car. I cover her with an 8 lb weighted blanket, given to us by a friend, hoping this will help sooth her. There’s pretty much only one reason she ever gets into the car when it’s still dark. </div><div><br></div><div>5:10 am: We check into the hospital and find a seat in the waiting room. Dad is here to make Keira smile. We get a well-timed note from a friend, who’s little girl, Annie, loves Keira. She wants to come over sometime soon to read stories to Keira, who smiles when mention Annie’s name. </div><div><img id="id_8126_8dde_920d_3166" src="https://lh6.googleusercontent.com/pIbtK128ORUtBSzH0PuWHGcCS5xeSRxl6_3IbBFTGv1w_-uc-xAOQ8WUPmQ" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br></div><div>6:45 am: We are finished with pre-registration and sent downstairs to pre-op waiting. The staff there is very familiar. We take a seat and Keira starts to look worried. Her mouth curls up a bit like she has a bad taste in her mouth. She looks as if she would wrinkle her nose if she could. Her tongue retracts and her breathing gets loud. </div><img id="id_7c62_c0f2_5f41_b393" src="https://lh4.googleusercontent.com/0YBCD2oXbN-zcb2ns2Xrm6F8_x131B9t6dAHJPwUgYyWKHnCIrM762pZ4C4" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><div><br></div><div>6:50 am: Called into pre-op, where K gets her own room. As we set her on the bed, she acts panicked. This is a reflex she’s maintained from infancy, spreading her arms and legs as if she’s falling. After vitals, she calms down and seems to like the nurse. She cuddles up in the warm blankets and soaked up the compliments on her hair, her nails, her glasses. We change her into the familiar gown; the purple one with dogs and cats on it. K still looks concerned, but she’s relatively relaxed and smiles as each doctor and nurse comes through in turn. We learn from the physiatrist that there’s new Botox research showing some negative long term effects on muscles treated with Botox. We decide to go with our usual mode of operation and treat today’s discomfort rather than worrying too far into the future. </div><div><img id="id_70fc_bcb_8ce3_efae" src="https://lh4.googleusercontent.com/RPX_b8f6xCONSVWapAPAmFZybV6J_DLtthSNwEsqhB70SPSIxDQDW_vOc_0" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>7:30 am: 2 nurses come to take her back to the OR. Unfortunately, they are wearing their surgical caps, but fortunately the sight of them doesn’t make Keira panic like they have in the past. They bring an anesthesia mask that’s been rubbed with grape chapstick to make it smell good. The nurse fetched some Frozen stickers to decorate it. Jeff and I give her one last kiss and away she goes. We’ve stripped her of her glasses and hearing aids and I realize that this is the first time I’ve failed to remember to bring “Lovey,” the stuffed monkey. No matter. She seems like a pro, headed down that hallway without any visible protest. </div><div><img id="id_bba8_9bf9_daaf_88db" src="https://lh6.googleusercontent.com/LEHNEPWxS7v0sJy3oJO5anOYYf2_43qdF0XVajLrmhnhEy60tDMKe-jZO0U" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>7:35 am: Breakfast. A quick date in the cafeteria before going back to the waiting area so as not to miss the reports from the docs as they finish with her.</div><div><br></div><div>8:00 am: I’m texting friends and making lists. I start this post. I flip through Vanity Fair and remember that I’d like to go see Joker. </div><div><br></div><div>8:15 am: The audiologist has good news/bad news. Keira’s right ear continues to hold steady. Bad news is that so does the left ear, which continues to show profound loss. We may not even bother with the left hearing aid anymore, as it’s not helping much and emits lots of feedback. Note to self: Keep appointment with audiology to make new ear mold and schedule an ENT appointment to resume talks about cochlear implantation. </div><div><br></div><div>8:20 am: A lovely friend has offered to bring pizza for dinner and I gladly accept. A fellow waiting-room waiter talks too loudly about how she’s thinking of spending her extra several thousand dollars a month. She’s interested in ministry. The Hall Family is an excellent ministry, I think to myself. </div><div><br></div><div>8:30 am: The physiatrist steps in to tell us that all of the Botox shots went in well. Biceps, thumbs, lower legs, and toes. Note to self: keep next week’s appointment to refill Baclofen pump. </div><div><br></div><div>8:45 am: I send an email off to the Idaho Perinatal Project, inquiring about opportunities for providing CMV education at their upcoming conference. Jeff intermittently shows me dumb jokes on Reddit. </div><div><br></div><div>9:00 am: The orthopedic doctor says all went well. He gave her a block, similar to an epidural, that will keep her numb for much of the day. There were no issues with anesthesia or oxygenation during the procedures. Note: No baths or swimming for 2 weeks. Schedule 2 week follow-up. </div><div><br></div><div>9:30 am: Facebook. Angry Birds. Coffee. We finally get called to go see her. </div><div><br></div><div>9:40 am: Her eyes are already open when we go back and she slowly gives us a half smile. She’s very drowsy and pale, but her vitals are good. </div><div><img id="id_2315_2e35_5492_40fc" src="https://lh3.googleusercontent.com/yQW_HSSGETVC3TOC3kdQhur5lka0XmwnJc0OmWiXBZAzXULOYmNCEvOntew" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>Nurse: Would you like me to give her some Hi-cet?</div><div>Me: No, she had a block, I don’t think she needs it. Can you give her Tylenol? </div><div>Nurse: No, we only have Hi-cet. </div><div><br></div><div>She gets an order and brings us Tylenol. Keira’s mouth seems uncomfortable. Probably a sore throat from the tube they put down it in surgery. We feed her drops of water. Her stomach also seems a little uneasy, so they give her more Zofran. After learning about Keira’s surgery, Annie has sent her a little video greeting. I show it to K and get a half smile. She’s waking up great so it’s not long before we’re getting her dressed. </div><div><img id="id_b440_6f28_57b6_2a97" src="https://lh3.googleusercontent.com/1spLZmhRZNjXeHqrkTisx-qneQ2DRxWt82Q_R3y924Xi1TvtU56VxAnbGXc" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><img id="id_6de7_a390_f18f_c0a0" src="https://lh4.googleusercontent.com/acu0ssBuK4zDz5M5uKBk1JCUnEx88_UzIrLEsy5r996aLEQ0sTzus4dtycU" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>10:30 am: We are on our way home! I text the boys that their sister is in good shape. I had told them, “We’ll be gone when you wake in the morning, but if all goes well we’ll be back before you get home from school. If we aren’t home, it’s because K isn’t managing the pain well, or the medicines, or she’s not breathing well, and if that’s the case we’ll make plans.” Business as usual, and they had both declined for me to call them at school with an update. </div><div><img id="id_7111_a74e_f4dd_a868" src="https://lh4.googleusercontent.com/OEQK4-pZs8xKzS6PPSvP6Ob-aJdGc844omh9P8vSV-04PjYFKo-0hunpbDU" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>11:00 am: She smiles as we pull into the driveway. She giggles when Grandma asks if she wants to snuggle. It’s not long before they are cuddled up in bed and I get to go take a nap. </div><div><br></div><div>3:00 pm: We send a picture off to Annie. Keira overseers the writing of this post, and the boys get home from school. </div><div><br></div><div><img id="id_fbb3_29b_7976_197c" src="https://lh5.googleusercontent.com/8PAHnoPlRDNJ6Zfb0cbyfTdCKZ2i86s49uT3eEEIDfE8b0bgR0e8-hqu9Ac" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><img id="id_5bab_eeed_fd00_32cd" src="https://lh4.googleusercontent.com/w7Q5yBK4415QUQ1k1Ab9O3kAkwUQo5FIoruX9R6VDBlsIUYCuT_7RZGG6x8" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><img id="id_beff_da15_2fae_fb07" src="https://lh3.googleusercontent.com/EbN_d8RjZ23Dul2JB0NFqK08FsBzqonc1q66Clcz3J2gaj3JwZvAr_pfsdQ" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div><div>All is well and it couldn’t have really gone better. I suppose Jeff and I have a little PTSD from the past experiences. We were ready for ANYTHING. </div><div><br></div><div>Honestly and weirdly, I have the tiniest bit of something resembling disappointment. (What is that feeling called?) Because I was geared up and ready for sh** to hit the fan. Of course, we wouldn’t have it any other way. Jeff and I will take the rest of the day to decompress and relax. Thankfully, today is another day that Keira is showing us some amazing strength and resilience. </div><div><br></div><div>We are thankful to all the friends and family who rally around us during these repeated experiences. Today, we are particularly thankful for one special little girl who has gone out of her way to be Keira’s friend. Annie, you may never know how priceless it was, on today of all days, for Keira to be contacted in such a “normal” way by a friend. We love you! </div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-53241970061716567062019-11-04T17:49:00.000-08:002019-11-04T20:59:19.421-08:00Ourself: Looking for the little girl in a body that doesn't work<b>Preface</b><br />
This post has haunted me for years. I’ve written it in fits and starts and never
really found a great way to put the quandary into words. However imperfect, the
time is now because surprisingly and thankfully I’m seeing Keira’s personality,
honest, true, and undeniable, peaking out more and more in such a way that’s
alleviating my own internal battle with the issue. Because I feel this struggle
is important, I want to put words to it before it’s too distant a memory.<br />
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I have come up with a couple of conclusions while wrestling with these ideas. First, <span style="background-color: white;">t<span style="-webkit-text-stroke-width: 0px; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">he concepts of a) the developing self in a disabled body and b) the particularities of parenting children with severe disabilities are vastly complex and no matter how well I write,
the contents probably warrant a dissertation or two. Lucky for you, I’ve
written enough of those for my lifetime. </span></span><br />
<span style="background-color: white;"><span style="-webkit-text-stroke-width: 0px; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></span></span>
<span style="background-color: white;"><span style="-webkit-text-stroke-width: 0px; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Second, advocacy is such an important
term for healthy realization of both those concepts. Advocacy is a word I knew only vaguely before Keira's birth. Far from inconsequential, her potential hinges on my ability to be a good advocate for her. Generally a positive term, I think an advocate's effectiveness ranges immensely. At best, a good advocate will help to maximize a person’s interpersonal relationships and functional independence.
At worst, poor advocate will suffocate a person’s uniqueness and may even exploit her disabilities
for personal gain. </span></span><br />
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<b>Self and personality</b></div>
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What makes a person a person? What is “self?” Simply
speaking, it’s the essence of who we are; our tendencies, proclivities, and
neuroses. Our tastes, our aversions, our interests, our motivations, our
memories, our uniqueness. <i style="mso-bidi-font-style: normal;">Nobody can
define the self except the person themselves.</i> However, others can identify <i style="mso-bidi-font-style: normal;">personality</i>, which is the outward
expression of what a person thinks and feels.</div>
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But what about when a person’s body is so severely
compromised that so very little is physically and verbally expressed? Herein
lies so much of what is difficult about our life. What traits are truly Keira? How
much of what we attribute to Keira is really her? How often do I attribute my own preferences and anxieties to her? Does it matter? Am I doing a good enough job of trying to decipher who she is? How
often have I have assigned something to her because I had nothing else to go on? I
mean, how stupid do I look when someone asks me what her favorite color is and
I don’t know?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="color: black; float: right; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0.5em; margin-left: 1em; padding: 6px; text-align: right; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7Uf6u03EVRjlIkWanRq0s9M812vlSbvlum6PEtyPz5PFXRkiSisei5Hp2nE1TamDAXG472PJf6SEEZAvdlmBB6as0JOgTwzEyawHr0wA10SViIKYES-6lHk5fUx1srcnQFo-BHM3rdkOR/s1600/Ro+and+K.jpg" imageanchor="1" style="-webkit-text-stroke-width: 0px; color: #0066cc; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-left: auto; margin-right: auto; orphans: 2; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7Uf6u03EVRjlIkWanRq0s9M812vlSbvlum6PEtyPz5PFXRkiSisei5Hp2nE1TamDAXG472PJf6SEEZAvdlmBB6as0JOgTwzEyawHr0wA10SViIKYES-6lHk5fUx1srcnQFo-BHM3rdkOR/s320/Ro+and+K.jpg" style="cursor: move;" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 80%; padding-top: 4px; text-align: center;">There was never a doubt that she loves this guy!</td></tr>
</tbody></table>
A while back, I read a book called <i style="mso-bidi-font-style: normal;">Ghost Boy</i> by Martin Pistorius. It’s an autobiography about a man
who was typically-developing until late childhood, when an unknown illness
stripped him of all volitional movement and the ability to communicate. At
first, reading his story was really validating to me. <i style="mso-bidi-font-style: normal;">We’ve done so well! Keira would likely be a ‘ghost girl’ if we weren't such receptive, active parents. We’ve given her a life. What
if we hadn’t been there all along the way, insisting that the therapists and
caregivers wait and watch? Teaching them to notice her?</i><br />
<br />
As I continued to read, I experienced so much anxiety that I
stopped reading for quite some time. Martin’s family assumed for many years that he was no longer “in there.” They believed their son was gone and was incapable of intelligible thought. <i style="mso-bidi-font-style: normal;">How much of what we believe about Keira is accurate and how much is
made up? </i>You see, they eventually found that the young man was of average
intelligence and when a keen observer finally noticed, Martin was able to get the help he neede to be able to read, talk, get a job, and even publish the book. <i>Oh
my gosh. The pressure. I mean, I know that Keira is no Stephen Hawking, but how
much of Keira is still hiding in there? If we tried harder, what could she do?
How could I possibly try harder? <span style="mso-spacerun: yes;"> </span></i><span style="mso-spacerun: yes;"><br /></span><br />
<span style="mso-spacerun: yes;"><i></i><br /></span>
<br />
It was hard for me to get through the book and cope with
those ideas. Because I have some bad days. Some really dark days. I’m not proud
of the things that come to my mind:<br />
<br />
<i style="mso-bidi-font-style: normal;">What the heck am I
doing? Dragging my vegetable around from appointment to appointment like it
means something. Like it’s worth something to anyone but me, desperately trying
to cling to some shred of dignity and hope that this all for a reason and not
just a terrible tragic exercise in longsuffering. </i><br />
<i style="mso-bidi-font-style: normal;"><br /></i>
<br />
Sometimes we go to public events or birthday parties or
other places where we really want Keira to feel included. Inversely, I feel a
responsibility to help others feel comfortable with her, thereby making it
easier to include her. I love to take her out, but to go to a birthday party,
for example, is a lot of work, with me trying to keep her engaged and helping
others to engage with her in nonthreatening (to them) ways. Sometimes I
leave those situations feeling like I was working too hard. <span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">I’m not
fooling anyone. She’s my puppet; my ventriloquist dummy. </i><span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">She’s
Oscar and I’m the nameless Muppet carrying her trash can around. </i><br />
<i style="mso-bidi-font-style: normal;"><br /></i>
<br />
<div style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; mso-add-space: auto;">
<b>How to grow a self</b></div>
In what is popularly called the “fourth trimester,”
infants are kept close to their parents, as there is little they can do for
themselves. We quite literally wear them wherever we go. The baby who was
very<span style="mso-spacerun: yes;"> </span>literally a part of Mom’s body is
now physically existing outside of her, but psychologically, in many respects,
is still one with her. That’s why our babies’ cry can trigger the let down of
moms’ milk. That’s why the separation of baby and mom can cause mom to feel
real physical pain. We use our own experiences to care for our little ones. <i style="mso-bidi-font-style: normal;">I’m cold, so she must be cold. He’s just
sitting there and that would bore me, so he must be bored. </i><br />
<br />
<div style="line-height: normal; mso-add-space: auto; mso-margin-bottom-alt: auto;">
This connectedness is reflected in our language. Ever
notice how moms of littles often use the word “we” rather than referring to
herself and her child as individuals? Whether talking to the baby or an outside
observer, it’s often, “We have some work to do,” “We have a messy diaper, or
“We’re taking a bath.”<span style="mso-spacerun: yes;"> </span>Mom may be
literally referring to the baby taking a bath, for example, or mommy taking a
bath, or both taking a bath together. </div>
<br />
<div style="border-bottom: dotted windowtext 3.0pt; border: none; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
This language and sense of connection
changes gradually as the typical infant grows into a toddler and starts to do
things on his or her own. He develops independence enough that he is doing
things that Mom doesn’t necessarily consent to or want to participate in and as
the “we” becomes mom and daughter or mom and son, so we recognize the
tendencies, preferences, and initiative of the child start to grow. A little
budding self. </div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<br /></div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
Around age 2, our kids typically
stop being completely dependent and perhaps it’s that stark contrast from babyhood
that makes the twos seem so “terrible” to many. All of a sudden, he doesn’t
want to be a “we” anymore. He wants to start his own bath, eat his own food,
pick his own clothes. Kids start to play, and through the play, they assert
what they are interested in, what they think about, and how they feel.</div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<br /></div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
It's exhausting as a parent to feel like you are never ever progressing
to a new stage.Christmas after Christmas, I grow weary of walking down the
same toy isle, the one meant for babies and toddlers. I’m hoping for something
new that Keira will really enjoy and react to, but I know that I’m mostly going
through the motions, because what would her brothers think if I didn’t have any
presents for her under the tree?</div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<br /></div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
In many ways, Keira is still an infant. For one, she doesn’t
play. At least not independently. She shows very little interest in toys at
all. She can’t play with any toys without me directly manipulating them and her. She sees very little without me showing it to her. She doesn't know what is in her backpack when she comes home from school or what toys live in her closet. So, when she “plays,”
her caregiver has usually chosen the setting, the toy, and the manner in which
the toys are articulated. I put a lot of pressure on myself to go through the
motions and offer her these experiences, assuming that they are enriching for
her, but I can’t help feeling that I am putting a lot of “words in her mouth”
by putting her through these scenarios.<br />
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="color: black; float: right; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0.5em; margin-left: 1em; padding: 6px; text-align: right; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP8Gzdr8BttdjUhNh4mjxowWNtc7ZSUqTD36V9yXji8cfI2NlpnQRsactAOhMLNMAs-HGdYTN8604aOCZ-lofYGwYJYkfUhyphenhyphentn-_vWLej34B_3jilX_slQGIsK8tZK2FKBA-aMW8m_vu3g/s1600/our+painting.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP8Gzdr8BttdjUhNh4mjxowWNtc7ZSUqTD36V9yXji8cfI2NlpnQRsactAOhMLNMAs-HGdYTN8604aOCZ-lofYGwYJYkfUhyphenhyphentn-_vWLej34B_3jilX_slQGIsK8tZK2FKBA-aMW8m_vu3g/s320/our+painting.jpg" style="cursor: move;" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 80%; padding-top: 4px; text-align: center;">"Keira's" painting</td></tr>
</tbody></table>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
Some measure of “putting words in her mouth” is completely
necessary and important to being Keira’s advocate. I can read her body language
better than anybody. So, for example, when she is in the hospital, I am better
able to assess her pain level than the average doctor or nurse. But putting
actual words in her mouth has always made me uneasy.<br />
<br />
From a very young age,
we’ve worked with Keira to teach her to use switches for a variety of reasons.
She has switches on which we can record speech so than when she pushes the
button, she is “talking.” For example, when we are having friends over to the
house, sometimes we’ll set up her switch to illicit one of the following with
each push of the button: “Hi, I’m Keira!” “Thank you for coming to our house!”
“Do you like my new wheelchair?” “Will you play with me?” It’s an exercise in
helping her understand communication, to help others relate to her, to help her
practice some sort of volitional behavior. In this case, putting words in her
mouth seems to be the lesser of two evils. </div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<br /></div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<b>Herself </b></div>
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyurMAV-chNl9R88bLSOMz2LHU0EhhPNE36becAFR6yAcu7JHz5jgbPOwJB1hO9wp_wJebeGgpepPiks7fW13i5v9u8Eab_NuJNwjujb_rB1OeJSDYptwmdPJ3RmUPOsG71rCQzZDt1GqE/s1600/hatchimals.jpg" imageanchor="1" style="clear: right; color: #0066cc; float: right; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-left: 1em; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></a>What traits have been assigned to Keira? At some point, someone somewhere decided that Keira
preferred yellow. Similarly, someone somewhere asserted that Keira liked pigs
over other farm animals. What I suspect those people didn’t understand back
then was that it was very difficult for Keira to visually focus anywhere but
her right field of vision. So, when they held up 2 items, Keira wasn’t
“picking” the one on the right because she liked it. She “picked” it because
she could see it. Yet, the item on the right became her “choice” and her
“preference.”<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyurMAV-chNl9R88bLSOMz2LHU0EhhPNE36becAFR6yAcu7JHz5jgbPOwJB1hO9wp_wJebeGgpepPiks7fW13i5v9u8Eab_NuJNwjujb_rB1OeJSDYptwmdPJ3RmUPOsG71rCQzZDt1GqE/s1600/hatchimals.jpg" imageanchor="1" style="-webkit-text-stroke-width: 0px; clear: right; color: #0066cc; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-left: auto; margin-right: auto; orphans: 2; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyurMAV-chNl9R88bLSOMz2LHU0EhhPNE36becAFR6yAcu7JHz5jgbPOwJB1hO9wp_wJebeGgpepPiks7fW13i5v9u8Eab_NuJNwjujb_rB1OeJSDYptwmdPJ3RmUPOsG71rCQzZDt1GqE/s320/hatchimals.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Satisfied with her Hatchimals</td></tr>
</tbody></table>
<br /></div>
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table>
We ran with the pig idea. We thought it was cute and we
briefly entertained getting teacup pig for her as a pet. We dressed Keira like
Peppa Pig for Halloween, which was fun because when Keira's happy she actually
makes a snorting noise. I’ve made a point of rewarding her (<i style="mso-bidi-font-style: normal;">is the reward for me or for her?)</i> with a
little trinket after each of her monthly blood draws. I was routinely buying
her mini Peppa figures until we had about 6 or 8 of them. I’m pretty sure I
enjoyed collecting them more than she did. I was thankful and proud of her,
though, <span style="mso-spacerun: yes;"> </span>when she finally asserted (by
looking to her <i style="mso-bidi-font-style: normal;">left</i>) that she would
prefer a Hatchimal over another Peppa toy. That’s Keira in there!!<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: x-small;"></span><br /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
Never in a million years would I have predicted that I would care so much about my daughter's looks. I have found myself immensely glad that she is cute. That she has pretty curly hair. That she tolerates me dressing her stylishly. That she lets me paint her fingernails. But what I find, for better or worse is that these things add up to 1) making her more approachable, 2) helping others feel more comfortable with her, 3) giving people something to talk about besides her disability. Is it
because I value outward appearance so much? Absolutely not. It’s because it is
so difficult to know who she is and what she likes so it’s another effort on my
part to make these statements for her. Does she LOVE having her nails done?
Maybe? She tolerates it. What I know for sure is that she loves attention from
others. (Again, if she were typical, I really doubt I would celebrate her
trying to draw attention to herself in this way). On bad days, I wonder if I’m just playing dress up with my doll.<br />
<br />
<b style="mso-bidi-font-weight: normal;">Ourself</b><br />
Is there such thing as “ourself?” I didn’t think so, but I
did find it in the dictionary. Maybe it’s applicable to identical twins? Maybe
it’s a hoaxy sort of concept for those with ESP or fortune telling abilities?
In any case, it doesn’t generally seem that a shared self would be very healthy.
Think of terms like enmeshed, conjoined, symbiotic, interdependent,
codependent, and diffuse boundaries. None of those are typically used when
talking about healthy parent/child relationships. Parent/child differentiation
is what is important. But how much can Keira “differentiate” when she cannot so
much as get out of bed without me? With Keira, symbiosis and dependence seem like
a necessity. Which, in turn, makes me cringe at the idea of me potentially having to live life without her in the future.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="color: black; float: right; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0.5em; margin-left: 1em; padding: 6px; text-align: right; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdPEMgH0fFxDZ7DmFawIq4PFtShjGK6KcteWkKUftLAiaPDEMjrQhBhe14iaybqia-G38Hga6tRWI5FvD-_YyyJmdXhFGLL5xRmgqHakNVcDQgojGiJqXtgfChm8WC2UP-3rT9V3bWadqP/s1600/ice+cream.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdPEMgH0fFxDZ7DmFawIq4PFtShjGK6KcteWkKUftLAiaPDEMjrQhBhe14iaybqia-G38Hga6tRWI5FvD-_YyyJmdXhFGLL5xRmgqHakNVcDQgojGiJqXtgfChm8WC2UP-3rT9V3bWadqP/s320/ice+cream.jpg" style="cursor: move;" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 80%; padding-top: 4px; text-align: center;">"Our" Halloween costume</td></tr>
</tbody></table>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
It’s not just me sculpting Keira’s identity. She has surely
sculpted mine. My time. My professional practice. My writing. My availability to other family members and friends. Being Keira's advocate has become a heavy
responsibility that extends outside of our own family and into the community. I’ve
written before about how she “makes me special.” The things that I am often
known for these days are the roles I’ve been introduced to as a result of my
experience mothering Keira: CMV advocacy, parent mentoring, and inclusion
ministry. My life now is so inextricably entwined with her and everything she
represents. It’s messy. Having Keira has given me opportunities that make me
feel important and fulfilled. I’m no longer me without her. She’s not her
without me. I suppose that’s true of all mothers with their children. But it
feels so much weightier with a child who is so vulnerable. <span style="mso-spacerun: yes;"> </span><br />
<br />
<div style="border-bottom: dotted windowtext 3.0pt; border: none; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div style="border: none; mso-border-bottom-alt: dotted windowtext 3.0pt; mso-padding-alt: 0in 0in 1.0pt 0in; padding: 0in;">
Eventually, most kids will
clearly confirm or deny whatever traits we have attributed to them. With Keira and kids like her this rarely happens. I keep having to do all the things. I
keep having to make all the decisions, claim all the preferences, and magnify
any efforts at self- assertion and communication that I think I may have
possibly kind of, sort of seen. My job, as I see it, is to identify, as
correctly as I can possibly muster, her distilled personality and share it with
others. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="color: black; float: right; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0.5em; margin-left: 1em; padding: 6px; text-align: right; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz9DjGPahgzFnHCNFA3HvNLijiBH7NrTS7AQ0b5K2xgUWHejO06hETzW_rKHGHnRbn19Uu2ferp04jsjURdBeLC-vZSc7a9-3kqpCUIaKGUwu4DuwAggwqYhoWgIos8Q-WezW024qxP4oI/s1600/new+glasses.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1280" data-original-width="1242" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz9DjGPahgzFnHCNFA3HvNLijiBH7NrTS7AQ0b5K2xgUWHejO06hETzW_rKHGHnRbn19Uu2ferp04jsjURdBeLC-vZSc7a9-3kqpCUIaKGUwu4DuwAggwqYhoWgIos8Q-WezW024qxP4oI/s320/new+glasses.jpg" style="cursor: move;" width="310" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 80%; padding-top: 4px; text-align: center;">K's new glasses are MY favorite color, but she did seem to prefer them!</td></tr>
</tbody></table>
</div>
<br />
<b>Keira herself</b><br />
Just when all this was starting to weigh heavily on me,
Keira went through a seriously assertive and sassy phase. I found her
often saying no to me (pursing her lips), and only me, much of the time. She seemed to me to be saying, "Take me here. Take me there. Do this for me. Do that for me. But don’t
talk. Stay out of the way. Leave me alone." It was as if she were trying to create her own space and semblance of independence. I was proud
of her, really, though Jeff did give her a stern talking-to about being respectful
to her mother.<br />
<br />
Keira is 7 now. Seven, of all
the years so far, has seemed to bring with it such unbelievable change. It is
hard to describe how a girl with so little functional ability can grow and
mature, but she is. Like a flower that grows through a crack in the concrete, it’s
hard to imagine that anything could develop within such a confined space. And boy, I'll be the first to admit I’m cynical, but I sure love for her to surprise me.<br />
<br />
More than once, by coughing or pursing her lips, Keira has
told me to go away when a favorite caregiver comes over. Similarly, she has
told me what outfit she doesn’t want to wear. When we ask her about her day, we
aren’t just hearing ourselves talk anymore. When we guess at what she has been
up to all day, she laughs (accurately, we later confirm) when we correctly
identify what she did (ie. Therapy, swimming, painting, or library). As more of
her life is lived outside the house, we are finding that others are drawing
similar conclusions about what she likes and dislikes.<br />
<br />
We have found that when
we have gone with our hunches in regards to her preferences, we are usually
rewarded. In this way, we decided to have a birthday party for her this year in
a fashion that would be suitable to any 7-year-old girl, with crafts and treats
and other 7-year-old girls. Boy was that a great day.<br />
<br />
Even Christmas feels a little different this year. We’ve
decided to splurge and get Keira an American Girl doll, complete with curly
blond hair, glasses, hearing aids, and a wheelchair. It’s an impulse for sure,
and we know full well that the gift may be more for us (wanting to buy a gift any typical 7-year-old would love) than for her. However, we also have hope that she may enjoy this gift in a way that she's never enjoyed another gift before.<br />
<br />
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-35599968285937946842019-10-11T14:00:00.001-07:002019-10-11T14:12:24.641-07:00Updates Head to Toe
<br>
Hair- Keira has a couple of nickel-sized bald spots on the
top of her head; apparently casualties of wearing her CPAP at night. I’ve
bought her a satin-lined night cap to wear under her CPAP from now on to prevent
pulling, but so far I’m not seeing the hair grow back.<br>
<br>
Brain- Last year, Keira was diagnosed with “Continuous Spike
Wave Cluster Syndrome.” Never heard of it? Neither had I. Basically, her brain
activity is really funky when she sleeps. The neurologist said that little is
known about the condition except that kids who are found to have it tend to
show developmental regression. So, for that reason, she felt it was important
to treat it. Bring on a new medication: Depakote. Interestingly, since taking
this medication, Keira seems to sleep more and is more energetic in her
therapies in general. Her most recent EEG looked much better, too. Her EEGs
still aren’t normal, though we still have never detected an actual seizure and that’s
good news. <br>
<br>
Eyes- She is still benefitting from glasses. We are so
thankful for the developmental ophthalmologist, who practices functional
medicine in a way that is altogether different than the ophthalmologist or optometrist.
Last week she got a new pair of glasses and she’s looking so grown up. We still
don’t know how well she sees, exactly, but we do know that the glasses minimize
her “googly eyed” look and seem to make it easier for her to control her eyes.<br>
<br>
Ears- My biggest stressor in the past year was probably Keira’s
rapid loss of hearing. A key feature of CMV, we weren’t altogether surprised by
this, but it still sent me into a tailspin. Anticipating near or complete
deafness to come, I spent months worrying about how to maximize her eyesight, learning
sign language, learning about cochlear implants, trying to obtain a electronic
communication device, and trying experimental treatments. Thankfully, Keira’s
most recent hearing test showed that her hearing had stabilized, or in other
words, it hadn’t continued to decline. She currently wears a hearing aid in
each ear and is taking Valgancyclovir (the same antiviral medication that she
took at birth) in hopes of mediating the hearing loss. <br>
<br>
Mouth- Keira had 5 teeth pulled about 6 months ago. Because
she doesn’t chew and work her mouth the way you and I do, her teeth are likely
to resist coming out on their own. Also, pulling some teeth in advance will
hopefully prevent overcrowding in her microcephalic (too small) head. She
looked so cute without her front teeth, but it seemed that the adult teeth
would never grow in. Last week, though, they finally broke through! <br>
<br>
Throat/Lungs- Along with the spike wave syndrome, Keira was
diagnosed with sleep apnea and we’ve spent the last couple of months getting
her used to a full-face CPAP mask. Honestly, it’s gone much better than I’d
hoped. Even though Keira never seemed overly tired and didn’t have difficulty
sleeping before, she does seem more alert and engaged now that she wears the
CPAP at night. <br>
<img id="id_52c5_549e_ec9a_9e4c" src="https://lh5.googleusercontent.com/Qbg0hoYfeTexP1n-_y28SQD6S2zpmQovtgDYMI6U7KkFP1lQti64EavZY88" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br>
Stomach- Keira continues to do well with the Nourish we’ve
been giving her through her G-tube. She’s been growing quite a lot and seems
relatively healthy, overall. We have been so excited to see her interest in
eating orally improving. She almost always wants to taste what we are eating at
the family dinner table and in therapy, she is working on chewing without a
tether! She still is not able to take any substantial volume, but it’s fun to
have her socializing with us in this way. <br>
<br>
Hips- We went through a spell when Keira’s hips seemed
really uncomfortable, particularly in the mornings. Given that she has already
had 3 hip surgeries, it was good news/bad news to find out that her X-rays
looked clean. The pain may be a combo of growth and the hardware that remains
in her left hip from her last surgery. Next month, Keira will have surgery to remove
those pins and hopefully that will increase her comfort. <br>
<br>
Arms/Legs- K’s arms and legs are perennially stiff. She
often wears her clothes to bed as opposed to changing into her PJ’s because it’s
just so hard to move her limbs. We rely on the baclofen pump and Botox
injections to help with this, but they are both limited. For more than a year
we continually increased the baclofen pump dosage, hoping to further improve
her tone and discomfort. Basically, doctors suggested that we continue to
increase it until we saw negative side effects. Unfortunately, we seemed to
reach that spot a few months ago. For the first time, we dropped her dose back
because her dose increase had coincided with poorer head control and increased
coughing/retching/choking. It appeared that the baclofen was relaxing her neck/shoulders
area too much, and in a potentially dangerous way, so that set the limit on how
much it could help her arms and legs. <br>
<br>
Hands/Feet- We focus Keira’s Botox injections primarily on
her hands and feet. Unfortunately, she can only safely get these injections
every 3 months. And the Botox is at its best for only about 1 month out of each
3. Still, it’s probably worth it. Keira’s toes get so gnarled that they overlap
each other and make it difficult (sometimes impossible) to wear any kind of
shoes. However, at it’s peak, the Botox has her toes looking nearly normal and
for a couple weeks she can sport her cute sandals or boots. <br>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><div><img id="id_e6f4_f0_6fc6_b9b1" src="https://lh5.googleusercontent.com/MspKhYcN2CB1KzvKVLGRr1Od75XVR-i6Mlh7a2_1CYHI0RiqrfW4OwSgq4U" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><img id="id_b497_530c_694c_cad" src="https://lh6.googleusercontent.com/RQR30uK852UHDv7kHxdEsX4T6oa36nRgNQsn0gElDsdUFnRPPXB6dJg9Nzs" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><img id="id_96d9_531e_702a_b645" src="https://lh6.googleusercontent.com/6u4xDgVzbGrEjzrDb6s_VQxkoWl9ltfLuO8XXdxGc3PWtB4kHC_XEZe-Pb4" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-44645201810421805752019-03-05T13:23:00.001-08:002019-03-05T13:23:57.754-08:00Corwyn's CauseThey recently asked for our family's story and an account of what Corwyn's Cause means to us. I wanted to share it with you. Check them out at <a href="https://www.corwynscause.org/">https://www.corwynscause.org/</a><br />
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">We are the Halls! Jeff and I are both psychologists working
primarily with children who have neurodevelopmental differences. We have 3
children. Liam is 13, Ronin is 10, and Keira is 6. Keira came to us after a
seemingly typical pregnancy, but we soon learned that her brain development had
been severely compromised by a congenital infection of cytomegalovirus (CMV).
Keira cannot walk, talk, or hold up her own head. Her life has been complicated
by many illnesses and surgeries. Most recently, we’ve discovered that she is growing
deaf, so Keira is rocking some colorful hearing aids while I take a crash
course in hearing loss, cochlear implants, and sign language. </span></div>
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Keira has a beautiful smile, an effervescent laugh, and more
spunk than you’d imagine possible for a child with her limitations. Keira loves
nothing more than being with her brothers, swimming, and drinking coffee. Black
coffee. She has taught us so much about love and life. She helped inspire Idaho’s
first legislation to further education about CMV, which is more prevalent, devastating,
and preventable than most people know. </span></div>
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">In spite of all the beauty we behold with Keira in our lives,
it is also chronically stressful and difficult. The best way I can think of to describe
our life is that it’s like having a newborn baby all the time. We are always
watching her. As a family, we always need help. The needs of the older siblings
often get pushed aside. </span></div>
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">It is difficult to ask for help in the in-between times. We
are lucky to have friends and family who are there for us in crisis, like when
Keira is in the hospital. Corwyn’s Cause has made a welcome and measurable difference
in our lives. Corwyn’s Cause has truly provided our family with things we didn’t
know we needed. Monthly housekeeping frees up a lot of time and mental energy
for me to do things with my family that would go undone otherwise, like
swimming or an ice cream date with one of the boys. Corwyn’s Cause has provided
us with gift cards for St. Luke’s, which pays for meals in the cafeteria when
Keira is in the hospital or even a mocha to treat myself on busy appointment
days. One of my favorite gifts from Corwyn’s Cause was the Christmas lights they
put on our home last year! Christmas lights were something we’d always wanted
to do, but it was so far down the list of priorities that it never got done.
What a delight for us to see this festive display every time we came and went! </span></div>
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Corwyn’s Cause reminds us that there are other families out
there who understand what we are going through, even in the relatively steady/”normal”
times. And, through Corwyn’s Cause, we have access to those families. We can
message through Corwyn’s Cause on facebook, to get moral support or to find a
way to give our used equipment to someone who needs it, or to get advice about
where to get the best size 7 diapers in the valley. Families who are associated
with Corwyn’s Cause, I’d say, are families who are all dealing with the unique struggle
and beauty of raising one or more children whose lives are very limited. We are
families who don’t want to be alone, ostracized or forgotten. Neither do we
want to be pitied, patronized, glorified, or smothered in platitudes. Corwyn’s
Cause gets it because Corwyn’s family is one of us. Corwyn’s Cause meets us
where we are. No obligations. No apologies. No strings attached. I know of no
other charity of its kind. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Finally, Corwyn’s Cause hosts events for us to all come
together. Events for the moms. Events for the dads. Events for the whole family
that are inclusive of the typical siblings, too! Keira loved the summer event,
where some BSU athletes RAN Keira, in her wheelchair, across the finish line of
the race track they had set up. At the winter party, she loved getting to be so
close to the live musicians that they could sing in her ear. What precious
opportunities Corwyn’s Cause has provided. We can’t thank you enough.</span></div>
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<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";"><span style="margin: 0px;"> </span><span style="margin: 0px;"> </span><span style="margin: 0px;"> </span>-Bekah
Hall</span></div>
<div style="margin: 0px 0px 10.66px;">
<img alt="" id="id_5837_9edc_615a_9030" src="https://lh3.googleusercontent.com/-748nG4YjlLY/XH7otJLV6tI/AAAAAAAABpc/vbx-LwhzelAPShOXLSJiD16dKUKtMyouQCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" /><br />
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<img alt="" id="id_3a91_18fc_d3c6_6c94" src="https://lh3.googleusercontent.com/-FevkDCi3z9g/XH7ot6gWRXI/AAAAAAAABpg/LyV9O2Pwph4j7BeNT8HZaNdQ1dJn7xBSwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" /><br />
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<span style="font-family: "calibri";"><br /></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com1tag:blogger.com,1999:blog-9221275800076174555.post-6671713029920204552019-02-18T18:36:00.001-08:002019-02-18T18:36:27.896-08:00Ears, Part 2The results from Keira's hearing test were not what we had hoped. Her hearing in her left ear (the one with an aid already) has gone to severe loss, across the board. Her right ear now has loss, too; moderate at the lower pitches. That's a big change in just 3 months. We'll be going in tomorrow to get her fitted for a second hearing aid.<br />
<br />
This stinks. It really does. But there is also a part of me that is relieved, like I always am, to receive a diagnosis. I like to know the plan. I like to know in what direction we're moving, and what course to take. To know we're pursuing the "right" path, provides me with some security, false or not.<br />
<br />
Because Keira's hearing was worse, not better, they did not put tubes in her ears and we will not continue steroid treatment. Instead, I expect that we'll work with her hearing aids and work toward cochlear implants eventually. We'll try to make progress with the AAC devices (our second trial machine is sitting on the hearth right now, waiting to be put to use) and a person from IESDB (Idaho Education and Services for the Deaf and Blind) will start making home visits to teach us some sign language.<br />
<br />
Dr. Park emailed me on Friday afternoon from Salt Lake to see how Keira's test had gone. When I told him the results he was surprised. He wondered if perhaps she has had a flare up of CMV and asked that she get tested to see. Having this task to do helps me cope. He is a leading specialist in this area, after all, and maybe Keira's fight will further his research and help other kids in the future. They don't really understand yet what it is about CMV that causes hearing loss and Dr. Park's interest in Keira's specific case makes me feel that maybe he's on the verge of a breakthrough.<br />
<br />
Furthermore, after observing a couple of Idaho physicians seeing his recommendations and protocol through, Dr. Park directly asked us (me, the ENT, and the audiologist) whether we would be willing to help get our local hospitals on board with targeted screening.* He noted that he's been able to get hundreds of hospitals across the country on board with this and he sent me the published research articles he's used to support it. It's so exciting to see that what we've been through with Keira could get things moving in this way. Something like getting the ENT to talk to the hospital administration about CMV testing is not something that I could have done without Dr. Park's assistance. And it won't even require legislation! I'm pretty excited about that.<br />
<br />
I love you all for reading and supporting us.<br />
<br />
*Targeted screening refers to CMV testing that is done when a baby fails his/her newborn screening test. This is important because CMV is often the cause of childhood hearing loss, but if it is not tested and diagnosed within the first few weeks of life, we can never know for sure whether CMV was the culprit. Utah has passed legislation for targeted screening and other states are working on it. Targeted screening is different from universal screening, which would be if CMV were part of the newborn screening panel, in which case all newborns would be tested for CMV. No states, that I know of, do universal CMV testing. However, CMV has been officially nominated for inclusion on the U.S. Recommended Universal Screening Panel.<br />
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<br />Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com1tag:blogger.com,1999:blog-9221275800076174555.post-1543140745096290742019-02-13T15:15:00.000-08:002019-02-15T07:32:20.184-08:00EarsCMV is a leading causes of childhood hearing loss. It's a leading cause of a lot of problems, actually, but ENTs and audiologists have their finger on the pulse of CMV whereas other specialties don’t. One of the few official standards to follow when it comes to medical supervision and care of kids born with congenital CMV is to monitor their hearing. Kids born with CMV often fail their newborn hearing tests. Some pass their newborn test but lose their hearing later. Many suffer progressive hearing loss.<br>
<br>
Starting from birth, Keira has had her hearing tested every 6 months. She's had tubes placed a couple of times; not because of ear infections, but just to keep them clear of fluid and pressure so we could get adequate hearing test results. Keira has actually had very good hearing. In fact, I found it somewhat annoying that so much focus in CMV research and literature was in regards to hearing. Hearing, I felt, was the least of my worries. When you've got a child who can't see well and can't speak and can't walk and can't eat, hearing loss doesn't seem like the most urgent thing. But the truth is, many kids born with CMV have hearing loss and no other unfortunate disabilities, so hearing is of utmost importance to them. I get that.<br>
<br>
In October, Keira had her first sedated ABR hearing test. This was a bittersweet milestone. Until then, Keira could have all of her hearing tests done while she was awake (by putting probes on her head and reading the brain responsiveness to various sounds). However, she has recently gotten too wiggly for a non-sedated test. The increased movement is awesome, though the flip side of that is that now she has to go under general anesthesia for her hearing tests.<br>
<br>
The results of her first sedated test were bad! Her right ear tested normal, but her left ear tested as moderate to severe hearing loss. That was a huge decrease in under a year's time. It <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">was a pretty big blow. Once again, when things felt somewhat steady and predictable for Keira and for us, we were reminded of the precarious nature of her health, her fragility, and of course the idea that she could rapidly decompensate and leave us for good. </span><div><br></div><div>I wasn't altogether surprised about the hearing loss, but the audiologist surely was. The audiologist thought that we were pretty much out of the woods, believing that the longer Keira went without hearing loss, the less likely she was to ever have that happen. I wasn't so confident. One think I knew best about CMV was that it causes progressive hearing loss in children. Plus, I'd heard Dr. Park's recent updates regarding his vancyclovir studies.<div>
<br>
When Keira was born, she took vancyclovir, a dangerous antiviral medication, for 6 months because Dr. Park had shown that this reduced the incidence of progressive hearing loss for children born with CMV. It was (and still is) the only standard recommendation for treatment of babies born with CMV. Keira took the medication with no problems, took her routine hearing tests, and worrying about hearing loss was put on the back burner.<br>
<br>
In September, I attended the national CMV conference in Vermont. I listened to Dr. Park speak about his updated research. They were beginning to find, unfortunately, that the vancyclovir was not so much preventing hearing loss as it was delaying it. The children in his study were still losing their hearing, but it was happening later. This is unfortunate, but the vancyclovir is still beneficial because it is of huge importance for kids to have their hearing early in life to help understand language and communication.<br>
<br>
So I thought that his lecture was interesting and within weeks after returning from Vermont, we got this negative result from Keira's ABR. In response, I shot Dr. Park and email. I basically said, "You know that thing you were talking about? Yeah, we just saw that happen with our daughter." Dr. Park responded personally and informed me that he was doing some new research on a treatment method that was showing some modest results and he'd be happy to talk to us about it if we were interested. Jeff and I made plans to go and meet with him at Primary Children's in Salt Lake over Christmas.<br>
<br>
In the meantime, I went into high gear, trying to do anything and everything I could think of to help Keira in the event that she went completely deaf, like, tomorrow. I got super critical of her current speech and language therapy and decided they were moving too slowly. I got her started with a 2nd, additional speech therapist to do some supplemental work with Keira. I got her on the waitlist to see a 3rd, one who is renowned across the valley for expertise in AAC (alternative and adaptive communication). We got in contact with the Tobii Dynavox company, one of just two that makes AAC devices with eye gaze tracking. We initiated a 4-week trial of a "Tobii" device. "Just to see."<br>
<br>After Christmas, we left the boys with their aunt Shelly and cousin Sam and took Keira Salt Lake City. We met with Dr. Park, which was quite satisfying. As someone who knows CMV, he agreed that it’s likely Keira could lose the rest of her hearing in both ears and quickly. Bad news, yes, but so encouraging to have my suspicions validated. I felt like the doctors in Idaho thought I was overreacting. Park told us about a study he is doing that was just, I mean JUST, proving to have some measurable results. After following his protocol, some kids were not only having their hearing stabilized, but actually improved! <br>
<br>The protocol is this: As soon as we got home, we put Keira on a 3 week regimen of oral (G-tube) steroid (prednisone). Then, after a few weeks we’ll have her hearing tested again and if there is ANY improvement, they will put tubes in her ears and we’ll give her steroid ear drops indefinitely. He also recommended testing her hearing every 3 months. <div><br></div><div>Keira survived the oral steroid. Park told us that most kids take that dose without issue. I didn’t tell him that Keira’s mother once had to discontinue a steroid eye drop, an eye drop!, because it was making her crazy. During the first week especially, Keira was cranky, flushed, and sometimes inconsolable. But it got better as we tapered her down. Plus we got some interesting results right away. </div><div><br></div><div>We had to coordinate the care protocol with a local ENT. While at that appointment, the pressure in Keira’s ears tested normal! Normal! That hadn’t happened in years, if ever, and is most certainly due to the steroid. This gives us hope that she will test well enough to get tubes and ongoing intervention. </div><div><br></div><div>In the meantime, Keira received her very first hearing aid. It’s been unremarkable. She tolerates it swimmingly, but we don’t really notice any difference in her hearing or her behavior. And we did her 4 week trial of the Tobii Dynavox. </div><div>
<br>
Keira's response to the Tobii was really incredible. It broke my heart and made it soar all at the same time. </div><div>To train her to use the device, first we have to teach her how it works. It came equipped with several games for that purpose. For example, on “Pie Face,” there is a small picture of one of her family members in an otherwise black screen. When she looks directly at the picture, it triggers animation of a pie in that person’s face then switches to a new photo in a different portion of the screen. </div><div><br></div><div>The Tobii is basically a glorified iPad that has a strip across the bottom that tracks her eye movements. When setting it up and calibrating it, you can see where exactly she’s looking, which was fascinating. We saw that when trying to purposefully look for something, she was really only using one eye, her right eye. Then we observed that she had a hard time looking at things on the left side of the screen. To compensate, she would use all of her strength and rapidly move her head to the left, trying to capture the picture with her right eye. After 10 minutes of this, her face will be flushed with the effort. But, oh, was she ever proud of herself! She was controlling something in a way she never had before. And in spite of her visual impairments, she was getting it!</div><div><br></div><div>Eventually, the idea is that Keira would graduate from the games to communication boards. With her eyes, she would choose pictures off a grid to represent what she wanted and the Tobii would “speak.” We’ve got a long way to go with that. Just like any computer, the Tobii has its glitches and limitations. The programs available for young children are few and with the eye-gaze adaptability even fewer. What I had anticipated was an experience like we’d had with the boys on the iPad. I thought we’d be able to choose from a variety of apps featuring cute, colorful characters teaching the alphabet and manners and rhyming. I was sorely mistaken but found instead that I can create these programs myself. (Insert picture of my head exploding). Great. I’ve always wanted to dabble in computer programming and curriculum building. Not. </div><div><br></div><div>I practically kicked my heels when I was able to finally put that damned machine back in the mail. It felt like so much pressure. It’s much more cumbersome, too, than just asking Keira which thing she wants and waiting for a response in her expression. But, she may not be able to hear us always, so we’ll keep on keepin on. In fact, we expect a delivery today of the PRC, the other option in AAC eye-tracking equipment, to begin another trial. <br><br>
<br><img id="id_bbd9_e7f8_109d_9267" src="https://lh3.googleusercontent.com/-fw-IZG6iVyQ/XGZY-ALnLJI/AAAAAAAABo4/2eLFmaVDg8kDDOyT9KI_OUHJBMkqlYKJgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br>
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So all this brings me today. As I write, Keira is getting sedated for her ABR. If the results are what we hope, she’ll have tubes put in her ears. While we’re at it, she’s also going to have Botox injections, xrays, and dental work. </div><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">If K’s hearing has not improved, then we'll just deal with what comes as far as her hearing is concerned. The worst case scenario is more hearing loss, another hearing aid, and eventual cochlear implants. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div>She was as sweet as can be this morning. She gets nervous at the point that we go into the pre-op room, but she understands what we are telling her enough that we can visually see her trying to stay calm. She chose peach chapstick for her mask this time and she has Lovey and Peppa along for the ride. </div><img id="id_83f_c68b_4cd6_692f" src="https://lh3.googleusercontent.com/-KAG_2ebWRnU/XGbWX6umT0I/AAAAAAAABpE/JRDGfTh2Rus-IpzXDl29w9Syf0MggNuaQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><div><br></div><div><br></div></div></div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com1tag:blogger.com,1999:blog-9221275800076174555.post-52179664804446509502019-02-01T10:46:00.000-08:002019-02-01T10:46:53.018-08:00Turning 6<br />
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<br />
Just like that, another year has gone by and, as is the case with all kids, year 6 brought some interesting changes.<br />
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First and sadly, Keira graduated from (read: "aged out of") the intensive therapy program that we fought so hard for her to be a part of. I've probably mentioned it before, but it's a program that Keira attended 3 days per week, for 3 hours each day. It included PT, OT, speech, and feeding, plus lots of social interaction with kids much like her.<br />
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The program is open to kids ages 3-6 who are in need of all the services I listed. Though I fought long and hard from the time Keira was 2, she wasn't actually accepted into the program until she was about 4 1/2. The excuse I got was that they didn't know if she had the stamina to endure 3 full hours of therapy at a time. I didn't know how they could be so confident that that was the case and I was frustrated when child after child, often not even 3 years old yet and/or with higher functioning entered the program ahead of her. Note that this is the only program like this in the area and it can only accommodate 12-15 kids at a time. Keira finally got into the program when we agreed to have a one week "trial" to see how she would hold up. She blew them away [gasp!] not only with how she "held up," but how hard she worked and how much she enjoyed the program.<br />
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So, at age 6, the program lets kids go and helps support the child's transition into public school. Keira attended preschool last year at the same place where the "medically fragile" kids from our town go to elementary school. As such, I was pretty familiar with the school program and personnel and felt pretty good about her spending more time at school. For one, I perceived, we would spend a heck of a lot less time in the car, driving her back and forth to appointments every day. And Keira would be able to continue seeing all of her therapists, just less intensely. Just an hour per week for each of them.<br />
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Keira and Grandpa at the tea party</div>
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Still, I was sad for the program to be ending. Who else in Keira's life, I wondered, would ever provide her with the experiences that this place did? While in the program, Keira played with dolls, went camping in a tent in the middle of the group room, had a tea party, was in a play (complete with speaking parts, sets, and costumes), went on an Easter egg hunt, and played baseball. I was stupefied by how they managed any of these things.<br />
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Once early on when I picked Keira up, her therapist told me how much she had enjoyed playing with dolls that day. "How in the world?" I asked, because, naturally, my first thought is that I should try to duplicate this at home. Well. Picture this. One therapist to hold Keira in a sitting position and support her head. A second therapist to manipulate Keira's arms. And a third person to move and manage the doll, bottle, and other play materials for her. I was so happy for Keira to get to experience this "typical" childhood activity, but I also realized, and mourned the fact, that these types of activities could not be duplicated in "real life." So when the program's team asked me about how I was feeling about Keira graduating, I was nearly in tears when I said, "Who else is ever going to do these things for her in her life? Ever? I mean, how will she ever play baseball?"<br />
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<a href="https://lh3.googleusercontent.com/-ykiWSxNVAXU/XFSDZKpDMtI/AAAAAAAABnM/rVO6I2w0kpA-n5t3ywHaNpIPpvPFuXbTwCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a>
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<a href="https://lh3.googleusercontent.com/-2VQML5acb9c/XFSDYaYgxSI/AAAAAAAABnI/gpscm3vhWu4xNKj0Q0ArDirF6JmCSVyfQCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a>As each child graduates from the program, they have a special ceremony that is unique to the particular child. This was the cutest. thing. ever. Jeff and I, and Grandma and Grandpa sat in the chairs on one side of the group room while each member of the group gathered on the other side with their personal therapist. Keira was rolled to the front by her therapist and her smile grew as she noticed all the familiar faces watching her. The therapist held her green pre-recorded speech button next to Keira's head and with one head nod and one phrase at a time, Keira said something to the effect of, "Welcome to my graduation! Lately, my favorite thing in the program has been playing baseball! So, today, we are going to play baseball. But first, we are going to sing! Repeat after me!"<br />
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She began "Take me out to the ball game..." Which we all repeated in song. Keira bumped the button with her head for each phrase in turn, something that they had been working on very recently. And she mostly got the turn-taking idea, but sometimes went ahead with a solo rather than waiting for us to repeat her.<br />
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"Now it's time to play." She reported which kids were going to be on which team....<br />
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"My team is up to bat first. Who gets to go first?"...<br />
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"I do!"<br />
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Keira's therapist helped her to hold the plastic bat in her hands. Everyone in unison shouted "One, two, three," at which point Keira was helped to knock the large bouncy ball off of the tee. Keira's therapist pushed her through all the bases while the crowd cheered. The smile on her face was to die for.<br />
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Each kid participated in their own measure. Some in wheelchairs. One kid was in a walker/gait trainer. One was lying prone on a skateboard-like contraption, propelling with his his arms. A couple were fully capable of walking, but needed lots of assistance to follow the instructions of the game. The "outfield's" job was to pick up the ball and put it back on the tee. Everybody was a winner.<br />
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It was just adorable to see how each kid participated in their own way and with their therapist's assistance. Each kid looked so proud and so engaged. It was a beautiful thing. I wished I could share that moment with the whole world.<br />
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<img alt="" height="150" id="id_86c4_74a3_e53a_7c0d" src="https://lh3.googleusercontent.com/-ND8Dnl3osh0/XFSDbGDOxlI/AAAAAAAABnc/atp7Q9zDBhQF0aH8_VCANj_jtVyZgz6TACHMYCw/s200/%255BUNSET%255D" style="background-color: transparent; color: black; font-family: "quot"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; height: 264.75px; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip="" width="200" /><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
<a href="https://lh3.googleusercontent.com/-yo7fJEBBtC0/XFSDX29nPdI/AAAAAAAABnE/dfFlL5RdceULcW4Sr6mRZYWmtJrWtn59ACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><b></b><i></i><sub></sub><sup></sup><strike></strike><b></b><i></i><sub></sub><sup></sup><strike></strike><br /></a>After the game, the kids lined up and Keira was guided down the line and, in trick-or-treat fashion, each kid presented her with a laminated page that included his/her own photo, message, and artwork which was then compiled into a very special "goodbye" book just for her.<br />
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Soon after that sweet day, Keira started Kindergarten. I was so pleased that, without me even suggesting it, the IEP (special education) team decided that Keira should spend the mornings with an assistant in the general education classroom since she thrives on social interaction. I loved this idea, since most of the other medically fragile kids are unlikely to speak with or interact with Keira much at all. Keira is happy to go to school. Happy to ride the bus. Happy to come back home. And that's all I want. Learning is a bonus.<br />
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Here is a picture of Keira when we went shopping for her to get a new backpack and lunchbox for school. As usual, she's cracking up at Liam.<br />
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This summer, I discovered that Keira LOVES strawberries.<br />
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<img alt="" height="320" id="id_8eac_23f7_c3b4_32d" src="https://lh3.googleusercontent.com/-bgbt9t7todg/XFSOYVTOTYI/AAAAAAAABog/A0cPhPZJZCEAoMusci7th20lqjdl2aFeQCHMYCw/s320/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" title="" tooltip="" width="240" /><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
So for her little party we had a strawberry theme, ate homemade strawberry ice cream, and she wore her strawberry pants. We were happy that Papa felt well enough to join us. Papa is one of Keira's favorite people (and I think the reverse may be true as well) and unfortunately for Papa, the two had a lot in common what with their eating problems and hearing aids. Keira's favorite gift this year was probably her "baseball," bat, and tee.<br />
<img alt="" id="id_68f5_b11_532d_fffc" src="https://lh3.googleusercontent.com/-ykiWSxNVAXU/XFSDZKpDMtI/AAAAAAAABnM/rVO6I2w0kpA-n5t3ywHaNpIPpvPFuXbTwCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip="" /><img alt="" id="id_fea_2ec2_b747_e736" src="https://lh3.googleusercontent.com/-hB-FAuphquY/XFSDXDJxSmI/AAAAAAAABm8/x2s6mrOrpwgvNU02HS3mVCTe40NoHBrIACHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: &quot; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; height: 470.66px; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip="" /><img alt="" id="id_842a_dcaa_b072_f38" src="https://lh3.googleusercontent.com/-GgNZ_JV2JQw/XFSDXoOQNtI/AAAAAAAABnA/VGLr56BUuUsLnaaiKTfxke55vWVTLz86wCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: &quot; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; height: 470.66px; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip="" /><img alt="" id="id_5ba9_127a_3602_79b7" src="https://lh3.googleusercontent.com/-2VQML5acb9c/XFSDYaYgxSI/AAAAAAAABnI/gpscm3vhWu4xNKj0Q0ArDirF6JmCSVyfQCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: &quot; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; height: 415.29px; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip="" /><br />
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Isn't this the sweetest photo? I'd all but given up on school photography, but I feel like somehow, this photographer captured her. Kindergarten!<br />
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When the boys were young, I used to get stressed out by hanging out with other moms of similar-aged children. The reporting, bragging, and questioning that went on between us moms felt competitive and it exhausted me. When Jeff heard about it, and sometimes experienced it himself, he likened these discussions to a fishing derby (more recently called it a "developmental derby"). "When did your son walk? 14 months? My daughter was walking by 9 months." "You put cereal in your daughter's bottle? Oh. We are doing absolutely no solids until 12 months. It's better for their development." You know these conversations, right? Mostly they aren't ill intended. They are mostly just sharing and commiserating from parent to parent. However, if you are like me, a lot of those conversations leave you with feelings of having succeeded or failed as a parent in various areas of your kids life.<br>
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It's kinda funny, but I've witnessed some similar conversations between special needs parents. "We don't do that medical food because it's full of sugar." "We put our son in this therapy program when he was 9 months old." "We only go out of state for that medical specialty." "We drive 200 miles a week to therapies." Again, it's not all bad. We want the best for our kids and, for better or worse, we want acknowledgement for the hard work we have put into caring for them when we have very few role models and often conflicting information on what to do for them. And though I don't necessarily think that parents of typical kids should get badges for things like walking before one year, breastfeeding till age 2, or Montessori participation, parents of special needs kids may be due some extra credit for their endeavors. Plus, if we don't laugh a little, we'll cry a whole lot.<br>
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Here are some of the special needs parenting badges we had in mind:<br>
<ul>
<li>Out of state medical care badge</li>
<li>Ronald McDonald House badge</li>
<li>First IEP badge</li>
<li>5+ medical specialists badge</li>
<li>10+ surgeries badge</li>
<li>Participating in special needs legislation badge</li>
<li>Made a wish (Make a Wish Foundation) badge</li>
<li>Adaptive equipment designer badge</li>
<li>Firing a therapist badge</li>
<li>Honorary RN badge</li>
<li>Honorary MD badge</li>
<li>Honorary service coordinator badge</li>
<li>Honorary secretary badge</li>
<li>Honorary therapist badge</li>
<li>Unrecognized medical discovery badge</li>
<li>Wheelchair worth more than your car badge</li>
<li>Snake oil badge</li>
<li>Using your child as a scapegoat to avoid unwanted social activity badge</li>
<li>Handicapped placard badge</li>
<li>Near death experience badge</li>
<li>Successful insurance appeal badge</li>
<li>Lawsuit filed badge</li>
<li>Still married badge</li>
<li>Typical siblings are reasonably well adjusted badge</li>
<li>Blogger badge</li>
<li>Advocacy/prevention/awareness badge</li>
<li>Home medical equipment badge</li>
<li>Home modifications badge</li>
<li>Clinical trial participation badge</li>
</ul>
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How many have you earned? </div><div><img id="id_c58f_bdde_362d_3c5f" src="https://lh3.googleusercontent.com/-EAxsa0d8SMg/XEdlLKBVPZI/AAAAAAAABmo/w-sU955lKIYz9Ni8DdpeSWxsU43JI8CXQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 353px; height: auto;"><br><br><br></div>
<br>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-25557112141326661422019-01-11T12:59:00.000-08:002019-01-11T15:50:44.182-08:00Keira’s remodel<div>
Just the other day, I watched the contactor fill the last hole in the grout and our remodel is complete! A round of applause is warranted.<br>
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After years of planning, sketching, researching, calling, interviewing, etc, etc. we found a general contractor who was willing to take on this job! Turns out, most builders do not prefer remodels. They are even less likely to want to do an ADA compliant remodel and they may as well have laughed in my face at the prospect of doing major plumbing work on a house built on a concrete slab. I lost track of how many builders and contractors that I introduced the job to and never heard from again. I'm sure they were wondering why we didn't just build a new house (Maybe you are, too, but that story is for another time). By process of elimination, we came down to one great contractor who seemed to buy into what we wanted to do for Keira and our family. He didn't promise speed, but he promised good work at the right price.<br>
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The goal of the remodel was to create an accessible bathroom for Keira with a big, jetted tub and a roll-in shower. In order to do that in our current home, we had to basically demolish the center of our home, about a third of the square footage. This included both existing bathrooms, the hallway, and the existing laundry room. They started the work at the beginning of August, purposefully coinciding with our family trip to the coast and my parents month-long overseas vacation. That way, they could get most of the plumbing work done while we were either out of town or could freely come and go from my parents' empty house across the street. Of course things did not quite go as planned, so we were using toilets and showers at my parents house until about Halloween. It wasn't so bad. Especially for the boys, who didn't mind "watering the lawn," but we were happy with every inch of progress.<br>
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Aside from the timeline, there weren't many big, unexpected obstacles like you usually hear about with big remodels. I suppose when you're already going down to the studs and digging up concrete and dirt INSIDE your house, there's not many more surprises to be had. At one point, it looked like they were digging graves in there.<br>
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Let me give you a tour...<br>
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">This is the view through my kitchen into the old laundry room. We removed that door as well as the door from the old laundry room into Liam's room. The laundry room wall got pushed back a little bit and the old laundry room became the new guest bathroom.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
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<a href="https://lh3.googleusercontent.com/-6SaXtxlcnAg/XDfGpKpE10I/AAAAAAAABlU/8XP8tnPisl8hXPL6ZKlJ12GdsoyLatesgCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="background-color: transparent; clear: left; color: #0066cc; float: left; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-right: 1em; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></a></div>
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<a href="https://lh3.googleusercontent.com/-6SaXtxlcnAg/XDfGpKpE10I/AAAAAAAABlU/8XP8tnPisl8hXPL6ZKlJ12GdsoyLatesgCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="background-color: transparent; clear: left; color: #0066cc; float: left; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-right: 1em; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img alt="" border="0" height="320" id="id_e1b6_3cbe_e6f2_2cad" src="https://lh3.googleusercontent.com/-6SaXtxlcnAg/XDfGpKpE10I/AAAAAAAABlU/8XP8tnPisl8hXPL6ZKlJ12GdsoyLatesgCHMYCw/s320/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" width="320"></a></div>
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<a href="https://lh3.googleusercontent.com/-6SaXtxlcnAg/XDfGpKpE10I/AAAAAAAABlU/8XP8tnPisl8hXPL6ZKlJ12GdsoyLatesgCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="background-color: transparent; clear: left; color: #0066cc; float: left; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-right: 1em; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" id="id_dd38_5922_d66b_6e6b"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">This is the view from the living room, down the hall to the "big" garage (where the new laundry room is). In the before picture, you see the laundry room door and the old guest bathroom door. On the right, you see the new guest bathroom, then just a wall, with the now-widened hallway.</span></a></div>
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<a href="https://lh3.googleusercontent.com/-5GDTlzMmoLU/XDfGnna2THI/AAAAAAAABlE/kudW9gGdfz4FaSBOpa0NQSLpPhusXNZGgCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #0066cc; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-left: 16px; margin-right: 16px; orphans: 2; text-align: center; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img alt="" border="0" id="id_55f7_3d2f_e466_1c10" src="https://lh3.googleusercontent.com/-5GDTlzMmoLU/XDfGnna2THI/AAAAAAAABlE/kudW9gGdfz4FaSBOpa0NQSLpPhusXNZGgCHMYCw/s5000/%255BUNSET%255D" style="cursor: move; height: auto; width: 353px;" title="" tooltip=""></a><br>
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This is the old laundry room turned new guest bath. Not quite through with the decorating yet, but I really like it.<br>
<img alt="" id="id_ba86_29fa_62ec_eef0" src="https://lh3.googleusercontent.com/-AYqh9sIRFyE/XDkAx6lOR9I/AAAAAAAABmY/T-1jizYd8ngxjztu2lbg5nO3f8xWDchxgCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><br>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Now down the hall, into the master bedroom, so you can see our new and improved master bathroom. As you can see, we took a big bite out of our bedroom and added a wider door. There is now room if we need to install a lift and/or track system in the future. Keira could also live in the master room eventually if needed, but for now Jeff and I will enjoy the proximity to the "fancy" bathroom. </span><br>
<img alt="" id="id_d0d1_4191_4153_3ef1" src="https://lh3.googleusercontent.com/-_iXY9H0yMzY/XDfGn1eqSGI/AAAAAAAABlI/p9Ze_WJIPQwEye271fXmyH95CjElcMPqQCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><br>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Simple before and after of the master bathroom. You can see it's a real small shower. I don't have a picture, but the former guest bathroom was pretty basic. It had a tub/shower, but it was difficult to maneuver and too small for her shower chair.</span><br>
<img alt="" id="id_af99_3c5c_22ec_70fd" src="https://lh3.googleusercontent.com/-JYNwTf21EAE/XDfGo0isrjI/AAAAAAAABlQ/G7gwqvZt4G0giPRMFYdEBybp_G75s3rgwCHMYCw/s5000/%255BUNSET%255D" style="background-color: transparent; color: black; font-family: "times new roman"; font-size: 16px; font-style: normal; font-weight: 400; height: auto; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
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More pictures of the new space. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">There's a theme. Can you see it? I could call it "echoes of a dancer" or something like that. The pink is truly the same pink as my first pink leather capezio ballet slippers. The tile above my sink is called "arabesque." The shower curtain has some sequin-like shimmery detail. And the framed pictures. Two of them are of beautiful naked dancer feet. One is of a ballerina in tutu taking a final bow. Lastly, (Thank you, Lisa!) is a picture of the staircase that leads up to the ballet studio where I grew up.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
<img alt="" id="id_8a91_eb09_94d3_828c" src="https://lh3.googleusercontent.com/-eO_2gPithmw/XDfGobYlK6I/AAAAAAAABlM/9Mr0p2PYkHMP24XJlSEULw47cdQgl9GmQCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><br>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Now out the back door into the garage and you can see where we have built in a whole new laundry room. Our house has two garages and this one, that my dad build many moons ago is big enough to house my laundry room as well as Keira's van. We had the contractor build in a linear drain in the garage floor so that when it snows (not this year, I guess), we can get Keira in and out of the car inside the garage without flooding the garage with snow melt. (In the foreground is a project Ronin is working on. He's building a "skate park" out of scrap materials for his finger skateboards.)</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
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<img alt="" id="id_590d_210_fbb6_cb55" src="https://lh3.googleusercontent.com/-NJKwkgwNSFo/XDfGpsA5nSI/AAAAAAAABlY/pZUd1aTVSeUh_md0k_OLgEX_RTeYVcCjACHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><br>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">I love, love, love my laundry room. I was able to put whatever I wanted in there because, truth be told, Jeff NEVER goes in there anyway. So, ha! I just love my wallpaper. I have never had such a functional laundry space. I'm convinced that with the lighting and the utility sink and the rack for hang drying, our clothes will be cleaner! Also, my friend Wade built me these great cabinets that MORE than make up for the loss of my linen closet earlier in this process. </span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
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<img alt="" id="id_ab04_5f89_8075_ec8b" src="https://lh3.googleusercontent.com/-u3sx3Wd4LI8/XDfGkt3uwfI/AAAAAAAABk4/lo2NuzERRLUtvLFl4R2g56D2DTneDnemgCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><img alt="" id="id_f3bf_2908_d735_bdbf" src="https://lh3.googleusercontent.com/-GMmA04YwAWE/XDfGmxbg3cI/AAAAAAAABk8/mO-7cSkCa_syNvm2Olmy0clHuVtakdYGwCHMYCw/s5000/%255BUNSET%255D" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; cursor: move; font-family: "Times New Roman"; font-size: 16px; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; height: auto; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; width: 353px; word-spacing: 0px;" title="" tooltip=""><br>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">And THIS is how happy we are about the remodel. </span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br>
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Water is one of Keira's favorite things. Baths, showers, pools, you name it. It is now much easier to give Keira baths and showers. Easier because there is more space and she can be in her bath chair in the tub and the shower. Easier because it's less awkward boosting and contorting of MY body to maneuver her around and safely support her the too-small bathroom. Getting Keira ready for bed after that first soak with the jets and all, her limbs were so relaxed and loose. I mean, we'd probably only seen her that way one or two other times in her life. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">I texted Jeff, "We did a good thing. This was so worth it."</span><br>
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<br>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-15737824609021296662019-01-08T11:30:00.000-08:002019-01-08T11:30:03.591-08:00Welcome back!<div class="MsoNormal" style="font-family: "Times New Roman"; margin: 0in 0in 0.0001pt;">
It's been too long. </div>
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I want to update all of you. I want to air my dirty laundry. I want to be honest and open about what this life is like. </div>
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I've found it increasingly difficult to write, though. Obviously. </div>
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I think there are a lot of reasons, but one of the biggest is probably the fear of offending someone. There are so many people in Keira's life now, for which I am eternally thankful. And there are a lot of hard things. And the hard things, inevitably, include fallible people. By publishing the cross-my-heart honest truth, I run the risk of offending and/or alienating people who work hard for Keira. </div>
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And I'm afraid I resent that. I wish everyone could just pull up their big girl/boy pants and be adults about everything, but it's not always that easy. Sometimes my frustrations are justified, and sometimes I just need to vent. I, too, am fallible and even though I know that, I typically try pretty hard not to burn any bridges. The sheer effort of that alone feels exhausting sometimes.</div>
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So, you see, I have conflicting goals. One goal is to create as big a support group as I can for our little girl. The second is to be an open book about the ins and outs of life with a medically fragile child. </div>
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I don't believe that one necessarily precludes the other, but it's risky for sure, and with my limited time and limited energy and limited -je ne sais quoi- sanity (?!), it's been easiest to avoid the writing altogether.<br />
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But here I go again. Because I think it's worthwhile. And I hope you think so, too. So much to share. Stay with me!</div>
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Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com2tag:blogger.com,1999:blog-9221275800076174555.post-54689693991093537942018-04-27T22:31:00.000-07:002018-04-27T22:31:24.187-07:00Mama Bear Business: The worst hospital stay<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">As I enjoy
the relative calm and clarity that 2018 has brought me, I’ve looked back over
my blog and I see gaping holes where stories have yet to be told. This one has
weighed on me for quite some time. This entry
is regarding a hospital stay in February of 2017. <o:p></o:p></span></span><br />
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Jeff and I had taken a a rare opportunity to get breakfast together at his favorite
diner that Saturday morning. We arrived late to Ronin’s basketball game
and the rest of the family was already seated. I went straight to greet Keira
and sat down so that I could take her from my dad and cuddle her a bit. </span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Eternally
hypervigilant, I almost immediately asked, “How long has she been breathing
like that?” The gap at the base of her neck, between her collar bones* was
visibly coming and going as she breathed. I pulled up her shirt and saw that
her belly, too, was laboriously contracting with each breath. Apparently, this
had come on rapidly, as my parents had not yet noticed and said she’d been fine
all morning. True to form, Keira seemed happy enough, but this type of
breathing was concerning (<u>this was a precursory symptom <a href="http://keepondancinglife.blogspot.com/2013/02/picu.html">the time she rapidlydeteriorated and ended up in a medically induced coma for 10 days</a></u>), so I
took Keira home right away to check her oxygen level and to remove her from the
chaos of the gym. <span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">It was hard
to get a good reading on our pulse oximeter. Thirty bucks on Amazon, it’s sure better
than nothing, but isn’t necessarily efficient and/or accurate like the ones at
the hospital. Historically, we’d been told that we should take her to the ER
for anything under 90. I got a 92, then an 89, then a 96, then a 91. </span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">My decision about
whether to take her to the ER waffled in sync with her pulse ox readings. “I’ll
wait till Jeff gets home and then we’ll go.” “I’ll go right now and Jeff can
meet me there.” “I’ll just wait and see what happens.” </span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Within the
hour, Keira was making grunting noises with each breath, so I called Jeff to
come home and join me to go to the ER. We knew that this would likely result in
a hospital stay, so I grabbed the necessities: phone chargers, heavy socks, vending
machine money, and a toothbrush. We positioned our troupes-- Janie and Dave
were ready for action, my folks and good friends were on deck if needed--and
off we went.</span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><strong>1:29 pm</strong></span></span></div>
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<span style="font-size: 12pt;"><u>Me</u>: Headed to the ER. No rest for the weary.</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Katie</u>: Who? Can I help?</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Me</u>: K. Labored breathing. Low oxygen. Nothing at this
point. We are all in good spirits so far. I’ll keep you posted.</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Katie</u>: I’ll await info. If you need anything, food,
kid care, milkshake, let me know. </span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Me</u>: You’re the best.</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Katie</u>: I hope to be. You deserve good friends.</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Me</u>: Heard a great quote yesterday…”The people who help
you, they might not be who you thought or wanted. They might just be who show
up.” I’m so glad you showed up. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"></span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">The service
was prompt. Nothing gets you into the ER faster than a kid in “respiratory
distress.” They hooked her up to check her vital signs. Her pulse ox was
fine. 98, in fact. As we spoke with the the nurse, the nurse assistant, and
eventually the doctor, filling them in on the basics of Keira’s ongoing
“condition,” they each, in turn, relaxed when they listened to her chest and
observed her vitals. All signs were pointing to sending us home. However, as we
sat there, I observed that Keira was progressively working harder to breathe,
looking more fatigued, and was starting a little fever. The doctor agreed to
run a test for RSV, but figured it would be safe for us to go home. I explained
my concern to the doctor, telling her that in the past, Keira had been very
strong until, suddenly, she wasn’t and had to be intubated. I could see that
her vital signs were good but I was concerned about how hard she was having to
work to maintain them. <o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">While we
waited for the RSV test, I texted with Keira’s pediatrician. She told me to
have the ER physician call her to discuss Keira. Later, the ER doctor came back
and in that moment, Keira happened to be looking quite perky. The RSV test was
negative, but after talking with Keira’s pediatrician, the ER doc had agreed to
admit her “overnight for observation.” It was clear to me that the ER felt this
was unnecessary and I hate, HATE being the pushy mom, but I was relieved that
she would be admitted. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Up in her
room on the pediatric unit, we settled in. I remember that there was a baby, a
little boy of maybe 10-12 months, in the room next door, alone. The door was
left open and every time I walked by, he lay there, by himself, quietly playing
with his toes in his crib. I wondered where his family was, if he even had a
family, and took pause to count my blessings. Took pause to count Keira’s
blessings. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">In turn, we
met the nurse (I’ll call her Clair), the nurse’s aid, the social worker, the
doctor, and the respiratory therapist (RT) on duty. In turn, they displayed
poorly masked surprise that Keira had been admitted to the hospital. I guessed
at what they were thinking: “She doesn’t look too bad. This will be an easy
patient. Makes for a light shift!” Whatever. <span style="mso-spacerun: yes;"> </span>I’m just relieved that she’s been admitted.
Now, at the very least, we can monitor her vital signs and have oxygen at the
ready. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I remember
pacing the west hallway, walking to satisfy my new Fitbit while Jeff sat with
Keira in her room. I updated Keira’s pediatrician and some friends, finalized
some details with members of the CMV team regarding our upcoming hearing. <span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><strong>9:22 pm</strong></span></span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 1em 0px 1em 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Katie</u>: Wishing you a good
night.</span><br />
<span style="font-size: 12pt;"><u>Me</u>: Thanks. Had to talk them
into admitting her. She’s worse. So hard to breath but her oxygen Is good. I
don’t get it. </span><br />
<span style="font-size: 12pt;"><u>Katie</u>: Good work. Mama bear
for the win. Sleep well.</span><br />
<span style="font-size: 12pt;"><u>Me</u>: It’s a very strange
sport, this mama bear business. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Meanwhile,
Keira’s breathing was getting worse, but the staff was all calm. Her oxygen
saturation (“sats”) was near 100%, so there was nothing to worry about, or that was what it seemed the staff was implying. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I googled
about oxygen and texted some good friends who are also nurses. </span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"></span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><u>Me</u>: Is it dangerous
to put a kid on oxygen when their sats are ok? </span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"></span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I was trying to find some rhyme
or reason to why the oxygen supplementation wasn’t being used. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><u>Hannah</u>: “I’d think it would be ok. She could relax and not
have to work as hard.” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">The next
time Clair comes in, I suggest that oxygen might be helpful. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Her sats
are good,” she said. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“But she’s
working so hard.” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“We don’t
give the kids oxygen if their sats are good.”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“I know you
don’t know what she’s like typically, but she’s not mobile. So this amount of
effort is enormous for her, like running a marathon.”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“I’ll keep
checking on her,” Clair said.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Time passed
and I used the call button again. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“She’s
working so hard to breath…” I repeated.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“The doctor
ordered a UA and they’re going to do some blood work to rule out any kind of
infection, so we’ll get to working on that.” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><strong>9:36 pm</strong></span></span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 1em 0px 1em 0.5in; mso-add-space: auto;">
<span style="font-size: 12pt;"><u>Me</u>: Anxious. Mind if I bug
you? K is working SO hard to breathe. But her oxygen sats are good. What would
happen if we put her on oxygen?</span><br />
<span style="font-size: 12pt;"><u>Hannah</u>: Sometimes a little
CPAP pressure is good…to help with the work of breathing. Do they do blended
oxygen in Peds? I feel like they do now. It’s a good question to ask. Are they
giving breathing treatments?</span><br />
<span style="font-size: 12pt;"><u>Me</u>: No. Her lungs are fine.
Don’t know about blended oxygen. I remember CPAP pressure! Thank you so much. I
will ask.</span><br />
<span style="font-size: 12pt;"><u>Me</u>: Doc is going to come
look at her. Will only do CPAP on PICU. This is the sickest she’s ever been on
peds unit. </span><br />
<span style="font-size: 12pt;"><u>Hannah</u>: Let me know what
they say</span><br />
<span style="font-size: 12pt;"><u>Me</u>: PEW (is that right?)
score is 4. Trying ibuprofen because her fever has spiked. They aren’t worried
because sats are good. I’m worried cause she has a history of going downhill
fast. How long can she work that hard?</span><br />
<span style="font-size: 12pt;"><u>Me</u>: They’re going to do more
tests. Urine. A more in depth influenza.</span><br />
<span style="font-size: 12pt;"><u>Hannah</u>: Hopefully the
ibuprofen will help her feel more comfortable and rest. They will keep a close
eye on her sats and intervene when appropriate…</span><br />
<span style="font-size: 12pt;"><u>Hannah</u>: Poor thing won’t get
any sleep…hospitals suck for that. I’m sorry.</span><br />
<span style="font-size: 12pt;"><u>Hannah</u>: I just looked up the
PEW score, as I’ve been out of Peds for 11 years, I like it. </span><span style="font-size: 12pt;"><u>Hannah</u>: And a 4 means she
will have an extra close eye on her</span><br />
<span style="font-size: 12pt;"><u>Me</u>: Good. Thanks for the
encouragement. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Clair came
in to insert a catheter to obtain a urine sample. I mentioned to her that Keira
had hardly taken any fluids for all. Unconcerned, she went ahead with the
catheter. Keira wasn’t happy, but she’s tough and I stayed at the head of the
bed to comfort. Clair fiddled around with the catheter, mentioning difficulty
locating some or another part of the anatomy. She withdrew and started over.
Again, she wasn’t able to get what she needed, saying aloud, “I’m almost sure
I’ve got it in the right place.” Keira, the exceedingly patient patient that
she is, was crying now. Clair went out and brought back with her a second nurse
with her who tried the catheter a third time. They were sure it had been
inserted correctly now, but were not able to get any urine out. Keira was now
furious. Screaming. Inconsolable. She’d now been catheterized 3 times and they
were still fishing around for a sample. I mentioned again that Keira hadn’t had
any fluids in some time. Keira looked scared and panicky, but the nurses had no
idea that this wasn’t just another kid crying in frustration. Keira needed to
be rescued. A third nurse came in with a little machine that she turned on and
said it was, “like a little ultrasound. We use it to see if there’s any urine
in there.” <o:p></o:p></span></span></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Where was
that machine BEFORE you attempted a catheter THREE times??!” I blurted, unable
to hide my frustration. <o:p></o:p></span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"></span></span><br />
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">The nurse said
something conciliatory; “It’s not always accurate,” or “Usually there is enough
urine to get a sample.” Clair avoided eye contact with me and said nothing. I
was angry and they knew it. They were unable to get a sufficient sample for the
urinalysis. They gave up and left. Keira had been consoled but the episode had
made her breathing worse, not better. My poor baby had a blank, dazed, shocked look
on her face. <o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“It doesn’t
help for you to get an attitude with them.” Jeff, had who witnessed everything from
his seat behind me, piped up. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Are you
kidding? Of course it does!”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“No, it
doesn’t.” Silence. Now, I was livid. And hurt.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“It tells
them that I’m paying attention and they can’t go about her treatment willy
nilly” I was flabbergasted. “Seriously? Did you see how upset Keira was? They
weren’t listening! I TOLD them how long it had been since she had eaten
anything! Somebody has to be her advocate!” <span style="mso-spacerun: yes;"> </span>Silence. “Haven’t we been told over and over
that ‘parents know best’ for kids like Keira and they need to lean on us for
medical decisions?” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I was really
bent out of shape about the incident and perhaps even more so that Jeff seemed
critical of my response to it. That he’d suggested I should have just sat by,
passive. That we weren’t on the same team about this. That he thought I was overreacting.
The air between Jeff and me was thick, but he gave me a casual apology and a
kiss before going home for the night.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I stayed at
the hospital. Apparently, Clair had decided to let the UA go altogether, which
was a relief, but her demeanor was icy whenever she came in for her obligatory
checks. Clair didn’t ever address what had happened and never talked about a
new game plan. We pretended nothing had happened. I didn’t know what else to
say and didn’t figure it was my job to fix the break in our rapport. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Why did I
care so much that she was mad at me? Granted, I started out this whole day in
high gear, emotionally on the rocks. At this point of the day, letting things
slide felt impossible. Especially since Keira was struggling so much. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Jeff and I texted
back and forth and he apologized for reacting the way that he had and not
being more supportive. This brought relief, but I still wondered whether I had
overreacted. Were the nurses just doing their job or had they been
negligent/neglectful? </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Clair rarely
came to check on Keira. She still seemed to think that Keira was just like any
other of the dozens of kids she’d treated with respiratory concerns. Keira
continued to struggle. The hours went by and as Keira’s eyes would finally shut
from exhaustion, her sats would drop. This would only last for a few seconds
before she would wake with a start, her breath catching. Her little rib cage was
working so hard. Moving more, in effort to breath, then we had EVER see her
move in “real life.” Doing anything. I mean, when she is at her most animated,
kicking and laughing, she is not working as hard as she was right then. Just
breathing. <span style="mso-spacerun: yes;"> </span>I pushed the call button a
couple of times. I wanted Clair to observe Keira’s effort and exhaustion. Each
time she came in, I suggested that some oxygen might help. She mostly ignored
my proposal and went about her rounds. <span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Again, I
pushed the red call button. Clair stuck her head in. Just her head. She said
nothing.<o:p></o:p></span></span></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">As calmly as
I could muster, “She just keeps getting worse,” I said. “And she’s so tired.
Historically, she’s been really ok until all of a sudden she’s not. I wonder
why we couldn’t give her some oxygen?”<o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“We don’t do
oxygen if their sats are good.”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“I
understand that, but her sats wouldn’t be good if she weren’t giving it
everything she had. Could you maybe ask the doctor what he thinks about it?”
The doctor card. Experience tells me that asking the nurse to ask the doctor
can be offensive to the nurse. And it can really rub them the wrong way if you
ask them to do it in the middle of the night. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“I can ask
him.” She left again.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">She didn’t
come back. A good while later, I pushed the call button. Again. I imagined her
swearing at the nurses’ station when seeing our room number light up.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“What does
he think about whether oxygen would help her be more comfortable?”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“He didn’t
say anything about oxygen.” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><strong>3:30 am</strong> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Keira still
couldn’t asleep. She’d barely eaten in a day. She couldn’t even cry because it
took too much effort just to breathe. I felt like I was watching my child
drown. She was like a person trying to come up for air, but who kept sinking
back down. It was a nightmare. It was as if the lifeguard was watching the
drowning, too, saying, “she’ll be fine,” between puffs on a cigarette. <span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">I resolved
myself and pressed the red button one last time. I waited, trying to breath
calmly. Several minutes later, Clair poked her head in the door. </span></span><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Yes?,” she asked,
failing to mask her irritation.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Hi. Keira
still hasn’t fallen asleep and she’s working so hard to breathe. I know her
stats are still ok.” (I gird myself, trying to sound composed and rational). “Could
you <i style="mso-bidi-font-style: normal;">please</i> help me understand what
we’re waiting for? Why can’t we put her on oxygen now? Is it dangerous? Are we
waiting for her to go into crisis? Do we need a doctor’s prescription? Please
help me to understand what the plan is.”</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">“Fine! I’ll
put her on oxygen!” She let the door fall shut behind her and flipped on the
light. She said nothing more to me. She stepped ON my cot and over it in order
to get to the tubing supplies. She ripped open the bags, plugged in the tubing,
thrust the cannulas into Keira’s nose and turned her back to me to do the
charting. She flipped off the light and closed the door behind her without
another word. Finally, finally more comfortable, Keira was asleep before the
door clicked shut. <span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Whew. I was
so relieved for Keira, yet I was a mess. What did I do wrong? I tried my
absolute best to try to be on the same page with Clair. To try to work
together. To try to understand the plan. Did I do something wrong?</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://lh3.googleusercontent.com/-tTimQtFEnLA/WuP0Q2r21SI/AAAAAAAABjw/ZlS5p3gnfKI4xnRnm2iWBH9u29DN6SbvwCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" id="id_4176_9abb_d0d1_1a31" src="https://lh3.googleusercontent.com/-tTimQtFEnLA/WuP0Q2r21SI/AAAAAAAABjw/ZlS5p3gnfKI4xnRnm2iWBH9u29DN6SbvwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Clair did
not come back. Twice, an aid came in to check on Keira’s vitals and asked sweetly
if I needed anything. “No, we are fine now. Thank you.” </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";"><strong>7:00 am</strong> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">The shift
change report was conspicuously NOT done per usual at the bedside. </span></span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: normal; margin: 1em 0px 1em 0.5in; mso-add-space: auto; mso-margin-bottom-alt: auto;">
<span style="font-size: 12pt;"><u>Hannah</u>:
How was the night?</span><br />
<span style="font-size: 12pt;"><u>Me</u>:
Awful. Had to really fight for the oxygen. The nurse, finally, basically said
“fine”, and threw the cannula on her then avoided us. But the oxygen helped her
promptly fall asleep for 3 hours. Still breathing REALLY HARD. I’m so tired of
fighting.</span><br />
<span style="font-size: 12pt;"><u>Hannah</u>:
You keep fighting…you’re awesome. I know it’s exhausting. Hugs to you. I’d come
relieve you if I wasn’t working today, if you’re still there tomorrow, let me
know. </span><br />
<span style="font-size: 12pt;"><u>Me</u>:
The more sensitive RSV test came back positive. Weirdly, I’m relieved. I hope
this gives us some direction. </span><br />
<span style="font-size: 12pt;"><u>Hannah</u>:
It will help, but I’m sorry. RSV has been tough this year. </span><br />
<span style="font-size: 12pt;"><u>Me</u>:
Thanks. I’m guessing it will get worse before it gets better. I hope they move
us to the PICU, but it’s not been discussed. I’m just so frustrated that they
keep looking only at the numbers on the board and not at how miserable she is.
She is working really really hard for those numbers! And I don’t know how long
she can do that. I just got home. I’m going to take a nap and Jeff is with her.
Thanks, Friend. It’s nice to vent to someone who knows what this is all about. </span><br />
<span style="font-size: 12pt;"><u>Hannah</u>:
Anytime friend. Get some rest.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzt9Cn2GmUNvyLgJZrWdUdqrePOY1V1lyiF7Qz5goFLL2pQiq3mdZs88Ic2wOfRqfizAUNG6Y7QCi8hpKEeXg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Once Keira
got on oxygen and the RSV was officially diagnosed, the rest of the
hospitalization was more or less routine. But the week was a storm. That
morning, Sunday, I went home and suddenly got violently ill. Like, so sick that
I was afraid to be left home alone because I thought I might lose
consciousness. I couldn’t see Keira the rest of that day, but we had a village
to help watch over her. <o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">On Tuesday,
Keira was on the mend and I left her at the hospital long enough to travel 3
blocks down the road to the Idaho Capital to speak at the hearing that
finalized the creation of our CMV bill. And yes, I shamelessly milked the fact
that she happened to be in the hospital with CMV-related complications at that
very moment. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://lh3.googleusercontent.com/-FSEgiuxDNak/WuP0SHz1IuI/AAAAAAAABj0/JTc_gDHudiYTB4YDER8sqG0gdsqi6n6-ACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://lh3.googleusercontent.com/-9bU0RhyqxZE/WuP0L-nfFdI/AAAAAAAABjg/kkhGK0qURBQso3VzfOfBmuL5CDoByaKNACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" id="id_afdd_20ae_a42b_404b" src="https://lh3.googleusercontent.com/-9bU0RhyqxZE/WuP0L-nfFdI/AAAAAAAABjg/kkhGK0qURBQso3VzfOfBmuL5CDoByaKNACHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating our success at the Statehouse</td></tr>
</tbody></table>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">That same
day, Ronin had to stay home from school. I didn’t know if he really was sick or
if he was just worried about his sister. In any case, neither Jeff or I could
care for him and he stayed with my gracious friend, Hannah, who gave him some
TLC while her own two boys were at school. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://lh3.googleusercontent.com/-Zu3ltgwQmDM/WuP0QmGWXYI/AAAAAAAABjs/JxEfq1EtWJAxHHuzhimnnWmG4oXooGy2gCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" id="id_7b11_f350_2f39_1356" src="https://lh3.googleusercontent.com/-Zu3ltgwQmDM/WuP0QmGWXYI/AAAAAAAABjs/JxEfq1EtWJAxHHuzhimnnWmG4oXooGy2gCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></div>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">When Keira
finally started resuming her feedings in the hospital, after several days of
primarily IV fluids, she began having an alarming amount of blood in her
stomach. We could see it in the tube when we burped her but it was also in her
stool. Not sure what was causing the issue, we (meaning the GI specialist, the
dietician, the doctor, Jeff, and I) figured it was as good a time as any to
switch her to a <a href="https://keepondancinglife.blogspot.com/2018/03/squirrel-supplies.html">different type of food</a>, which seemed to resolve
that crisis.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://lh3.googleusercontent.com/-UkTVLDn6P-o/WuP0Ml2Hd7I/AAAAAAAABjk/FdBwNqoE_7oun16SIGfrfpBZN-GzIaE_gCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" id="id_b274_d85d_2f10_b94a" src="https://lh3.googleusercontent.com/-UkTVLDn6P-o/WuP0Ml2Hd7I/AAAAAAAABjk/FdBwNqoE_7oun16SIGfrfpBZN-GzIaE_gCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeling better</td></tr>
</tbody></table>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">In the days
after, I continued to mull over that first night in the hospital. The issues
with the oxygen and with the catheter. I spoke with my nurse friends about it.
“Help me understand this,” I said. “Was I out of line? What should I have
done?” They were reassuring. At the very least, I gathered, the way the nurse responded
to my concern was unacceptable. I ended up reporting the events through the
appropriate channels at the hospital, but of course have no idea what became of
it. </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://lh3.googleusercontent.com/-bqkY0bFdGFQ/WuP0Pn73AlI/AAAAAAAABjo/RGn8PLmtOrwkds5ADXdimXsLCnZlapWlACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" id="id_6c25_fd09_8389_2444" src="https://lh3.googleusercontent.com/-bqkY0bFdGFQ/WuP0Pn73AlI/AAAAAAAABjo/RGn8PLmtOrwkds5ADXdimXsLCnZlapWlACHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally home and covered in get well cards from the sweet kids at church</td></tr>
</tbody></table>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">In the
months following, back to her “normal” self, medically, Keira demonstrated a
marked change in her behavior at doctor appointments. <span style="mso-spacerun: yes;"> </span>They used to be one of her favorite things, a
time in which she basked in the attention and cooed at the doctors, winning the
favor of anyone in a lab coat or scrubs. But now, Keira was getting panicky and
scared at one appointment after another. She’d throw her arms out in shock when
I tried to set her down on the examining table (<u><a href="https://en.wikipedia.org/wiki/Moro_reflex">moro reflex</a></u>). She
became tense and even cried when approached by nurses, even if it was simply to
take her temperature. I really believe that the thrice failed catheterization process
was a trauma to my dear girl. Bless her heart. A girl who was dealt a hand that
includes healthcare visits 5 to 8 times per week and smiled through them all as
if it were her birthday. A girl who had rarely cried at a blood draw. A
girl who, at times, has cried for two hours when she was supposed to be napping,
but forgave me with the most brilliant smile as soon as she saw me, the tears
still wet on her cheeks. That hospital stay broke her little spirit. Now she was afraid of
the doctors' office. It broke my heart and made me upset about the incident
over and over again.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">Fortunately,
experiences like that one are very few and far between. In fact, I have no other
stories like that one to share. Frustration upon frustration? Yes. Lack of
knowledge/expertise/perspective? Sometimes. But a healthcare providers who are
indifferent to my daughters comfort? No. Never. For the most part, I have been
pleasantly surprised by the level of care that Keira, and consequently I,
receive, given that the resources in our area are limited. Thankfully, with
lots of love and support, Keira’s anxiety at the doctor has subsided quite a
bit over time. We still find her to be a little suspicious of health care providers at first, but willing to trust you if you
earn her favor. She’s a pretty good judge of character. Atta girl!</span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: "calibri";">*Word of the
day: That’s called your suprasternal notch—you’re welcome<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "calibri";"> </span></o:p></span></div>
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<span style="font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "calibri";"> </span></o:p></span></div>
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<br />Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com1tag:blogger.com,1999:blog-9221275800076174555.post-64249630663454559862018-03-20T19:49:00.002-07:002018-03-20T19:55:37.696-07:00Squirrel Supplies<span style="font-family: "calibri";">Part of why I hesitate to write is because to describe Keira’s
life seems so pedantic. So tedious. So many consequential or maybe
inconsequential details. But last week something happened that added some
levity to one of these wearisome quests we’ve been on for years...feeding. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Since day one, feeding has been an issue for Keira. But last
year, we were at a pivotal point when she was in the hospital and having a
horrible time with digestion. We figured it was as good a time as any to try
out this new-fangled formula that the dietician had been telling me about since
before it was on the market. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I hadn’t been willing to make a change before. Even though
the formula we were using, like most “medical food” has an ingredient list that
begins with corn syrup and from there has a long list of words I can’t
pronounce. I actually came across an article once about a group of people
protesting the food, saying “I wouldn’t feed this to my animals.” It was
keeping her alive. I wasn’t going to mess with it. <span style="mso-spacerun: yes;"> </span>But now she was in the hospital, not keeping
anything down, producing more acid and bile and having a reaction that left a
lot of blood in her stomach. The new formula was worth a try. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">The new stuff was/is made of whole foods. It has about 10
ingredients, and all are things that I could probably grow in my own back yard.
Completely organic, whole food, <i style="mso-bidi-font-style: normal;">and</i> approved
by the FDA <i style="mso-bidi-font-style: normal;">and</i> covered by insurance.
The stuff is edible, but is intended for tube feeding. It smells a bit like
chicken soup and looks like baby food. The switch went well. Keira seemed to
digest it just fine and within a few weeks, even though she was technically
consuming fewer calories than she had with the previous formula, she was <i style="mso-bidi-font-style: normal;">gaining</i> weight. Her body does a better
job of utilizing real food than chemical food. Go figure. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">So it’s been wonderful, with just a bit of a drawback. This
formula, because it is real food, varies in consistency a bit. Some packages
seem oilier. Some are a bit thicker. For the first few months, we fed Keira
without a hitch. After a while, it was trickier, as the food that typically
flows pretty rapidly from the open syringe, through the feeding tube, and into
her stomach seemed to keep getting plugged up. I thought the problem might be
her button, so I switched that out. I thought it might be that the tubes and
syringes were old, so I switched them out. Nothing seemed to improve the flow.
When my mom or I am feeding her, it’s not a huge deal, frankly, because we blow
into the top of the syringe to get it going again. But of course this isn’t a
trick that’s condoned of any professional sorts, so the caregivers, therapists
and teachers are left with a clogged feeding tube. They have to use the plunger
on the syringe and sometimes that gets stuck, too, so they have to unhook it
from Keira, squirt some food into a cup to try to dislodge the clog, hook it
back up to Keira to resume feeding and repeat. And repeat. It’s a genuine pain,
yes, and sometimes it’s worse than others. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Last time we went to the GI doc, I filled him in. I told him
that we are really happy with the food, but that after a few months the food
seemed to get clogged much more often. “You are the 5<sup><span style="font-size: x-small;">th</span></sup> family, now,
to tell me the same thing!” he said. “I actually have been in contact with the
guy at the company about it. He said that due to variations in the soil and the
weather and different things, and because it’s real food, there are going to be
some variations. But he’s interested in the pattern I’m seeing. He’d like to
talk to a parent. Would you be up to giving him a call? None of the other
parents are in a place where I felt I could ask them.” I told him I’d be happy
to and he sent me home with the phone number and email of one of the company
directors. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">A few weeks passed before I made good on my promise, but I
did finally email the director. I told him about the pattern that I had seen
and said that it can be frustrating to the various people who feed her, but
that the issue is not significant enough for me to want to change formulas,
because overall we are really happy with it. I asked him if there was any way I
could help.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">The next morning, I had an email back from the director. He
thanked me for my email and recounted what the GI had already told me about the
natural variations in the all-natural product. “That said,” he continued, “we
want the product to stay within certain speculations and if it’s not, we need
to do something about that.” He asked if I would be willing to send him some of
the product the next time I encountered a batch that seemed particularly
problematic so that he could test it. He would compensate me for my trouble
with free product. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">This would be a hassle for me, yes, but it’s one of those
things that sometimes happens in parenting Keira, where I feel like maybe my
participation is making the world a better place for the next person in my
shoes. I was satisfied with the response. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">A couple of days later, though… a couple of days later I get
another email, I guess from another director of the company (she had been CCed
on the previous emails). First, she says, she wants to know if we are using a
regular rubber tipped plunger to feed Keira because if we are, it will be “nearly
impossible.” That’s why, she says, most people use these o-ring syringes or
squirrel syringes. She included a link. She went on to explain defensively that
the viscosity of their formula will not match other formulas because there is
no corn syrup in their formula whatsoever. “What we find,” she said, “is that
when people complain about our product, the problem really isn’t our product,
it’s the syringe they are using.” <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Also, and she was clear to specifically address the GI
doctor here, too. She wanted to know whether I was using a blender when I was
mixing the product with water. We “<b style="mso-bidi-font-weight: normal;">always
</b>advise blending it because oil and water don’t mix.” <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I’m already angry, feeling like I’ve just been lectured as
if I am not capable of basic problem solving. “Oil and water don’t mix.” No,
sh#*, Sherlock. Though she had given me two tips that I hadn’t tried, if she
was so sure of their importance, then why wasn’t it on the packaging? I was
already wanting to send a nasty retort, but first, I thought, I should check
out what these syringes are. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">You’ve got to be kidding me. The squirrel syringe is
literally that. A syringe for SQUIRRELS. The website is all about taking care
of squirrels. The FAQs cover what to do if you capture an injured squirrel in
your yard, and what to do if your squirrel has mange or fleas. They tout the “miracle
nipple” for bottle- feeding these animals and… there they are, the squirrel
syringes. They look very much like the syringes that I get from the medical
supply store, with a slight variation to the plunger and they are available in
larger sizes. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Wow. Just wow. There are so many places I could go with
this. The company of the MEDICAL food I buy just sent me to a pet care website
to help feed my daughter. Plus, they essentially said, “that’s what all the
knowing parents do.” Her condescending attitude aside, should I be concerned
that said syringes aren’t medical grade? That they aren’t covered by insurance?
($4.95 each plus $7.50 shipping and handling) Let alone the implications of the
fact that this is a website for PETS? For ANIMALS? We have a hard enough time
as a society, making sure that kids like Keira are treated like the living,
breathing, feeling human beings that they are. Good grief. And if you’re a
medical company that wants people to buy your product and you believe that you
need these special implements, then why don’t you say so? Better yet, why not work
that into a branch of your company so that we can get the syringes from your <i style="mso-bidi-font-style: normal;">medical company</i> rather than a <i style="mso-bidi-font-style: normal;">pet store</i>. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I was livid and simultaneously thought this was hilarious.
In a half restrained manner, I returned her email, thanking her for the two
tips that were news to me then said, “Frankly, I find this pretty frustrating.
If you believe that this is something I should “always” do and without it would
be “nearly impossible” to feed my daughter, then I think you should strongly
consider including this information on your packaging. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Not yet satisfied, I sent an email to the GI doctor alone.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: "calibri";">Syringes for feeding squirrels! Of course!
Why didn’t I think of that? (I’m so annoyed)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">To which he responded:<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt 0.5in;">
<span style="font-family: "calibri";">What the what?! I’ve never heard of
a squirrel syringe! Is that even a thing?! <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt 0.5in;">
<span style="font-family: "calibri";">And I couldn’t agree with you more
that before they can claim that they always (love the bold font) recommend
anything, then they should make sure that their product information and website
clearly states as such. And maybe some education for us non-veterinarian
trained physicians and dieticians would help too.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">To which I responded. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: "calibri";">Totally a thing. See link below.
How demeaning. (I’m going to go buy some now.)</span><br />
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Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-27457128318737083622018-02-17T08:08:00.002-08:002018-02-17T08:26:42.398-08:00Emergencies<div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">I’ve got the kids all squared away and I’m headed to a yoga
class that I’ve been looking forward to for 3 weeks now. I’m with a friend who
I cherish, but rarely get to see and between her 3 littles and my 3 kidlets, we
schedule far more coffee dates than we actually make it to. Feeling a little
triumphant, we’re walking down the hall of the YMCA and she asks how I’m doing.
“Good!” I say, a little incredulous. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">“Wow! Remind me what that’s like,” she
says. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">“Seriously,” I say, “Things seem to be going really well right now.
I’ll probably jinx it by saying that…” </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Cue my phone. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Seriously. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Not even
joking. Not embellishing. Not exaggerating. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">The caller ID says it’s the clinic
where Keira is at therapy. I sigh and lean against the wall. “This is Bekah.”
Her therapist greets me and proceeds to tell me that Keira is ok, but that
her hands have suddenly grown hot, red, and swollen. She doesn’t know what to
make of it and is not sure what to do. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">The only thing in my head is a big
question mark as well. Keira has never had any swelling that I can remember, no
allergic reactions. The therapist agrees to text me a picture and I hang up the
phone. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Looking at my friend apologetically, I effuse, “Damn it!” </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">“Not the
choice of words I would have gone with,” she said. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">The photos come through and,
sure enough, Keira’s knuckles appear to be disappearing. I agree to come and
get her and, defeated, hang up the phone again. “Well, now you’ve witnessed it
directly and know I’m not making excuses to not see you,” I tell my friend. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">“Even
if you were,” she said, “I’d still want to hang out.” She walks me to back to
the building’s entrance and as she’s trying to give me the 30 second update on
her life, my adrenaline spikes and I’m not able to attend anymore. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Swollen
hands? Who do I even call? ER? Pediatrician? Could it be a cardiac problem?
What in the world? In the car, on my way to the clinic, I call the
pediatrician. I call Keira’s PT who’s helped us with the Baclofen pump. I call my
parents. I call Jeff. I call the physiatrist in Twin Falls. </span><span style="font-family: Calibri;">When I get to the
clinic, K is still happy, but, sure enough, her hands are even puffier than in
the picture. They are also hot. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">My parents arrive just after me and we go
together to the ER downtown. We don’t mess around with the closest ER anymore.
Going downtown to the childrens’ hospital ensures that they have access to all
of her medical records, we are a stone’s throw from most of her specialists,
and it’s our best chance to get an ER doc who is not overwhelmed at the sight of
Keira. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">Checked in at the ER, I make conversation with the nurse. He worked with
us last time, a couple of months back when we brought Keira in because she was
having trouble breathing after ingesting too much water during her swimming
class. After a visit from a nurse, a nurse assistant, a doctor, 3 residents,
and a social worker, Keira’s swelling has begun to subside. They are ready to
send her home unless I insist on having a UA and some blood work done. </span></div><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">I’ve
gotten some return phone calls. “No, this is not a reaction that is likely to
be because of the pump.” “The flu has been weird this year. Make sure they test
her for influenza A.” The most helpful feedback comes from the PT. We’ve been
in touch and she knows that Keira has had a bit of congestion, a little cold
over the past couple weeks. “I’ve seen this in my other practice,” she informs
me. “Kids like Keira, who have limited mobility, sometimes struggle to flush a
virus out of their system completely. You’ll see puffiness come and go,
particularly in the upper body, as they struggle to eliminate the virus.” She
advised me that in the absence of increased swelling or fever, I might be able
to help Keira move the virus with massage, pressure points, and the use of her
vibrating chest vest. Encouraged with this advice and the negative influenza
swab, we take Keira home. </span><span style="font-family: Calibri;"> </span></div><img id="id_c3e6_43d9_9560_4156" src="https://lh3.googleusercontent.com/-cn3IcwXZCmk/WohXffsA_RI/AAAAAAAABi0/iIW6KzyOt9cyDtIzPVvCFCdjidfWxdbAgCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;"><br></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;"><span style="font-family: Calibri;">On the car ride home, I feel exhausted. “My adrenal glands
are tired,” I texted my husband. I realize that the emotional highs and lows of
the last 2 hours are not what most people deal with in a typical day. Is my day
shot, or can I get back on the wagon? To resume my day as planned means going
grocery shopping on my way back home and making fondue for Jeff and the kids
for dinner to celebrate Valentines day. I would really like to bag it all and
spend the rest of the day in bed, but after indulging myself with a BigMac Jr.
and an apple pie, I pull into Winco for my shopping.</span></div>
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<span style="font-family: Calibri;">All is well, but my brain needs to process through it. Was
it worthwhile to take Keira to the ER or was it a waste of time? Does the ER
think we’re ridiculous for rushing her in like that? I remember that for the
first 2 years of her life, things went from bad to worse SO FAST and that they
don’t necessarily do that anymore. But they could. They certainly could. She
tends to stay in pretty good spirits until she feels REALLY bad. Should I have
pushed for the UA and the bloodwork? They would have done it if I had asked.
Did I have good reason to? What if we missed something? They don’t know what to
do with her. I hate being the pushy mom. So often I’ve been right, though. Up until the influenza swab, all
they did was check her vitals. More or less, we could have checked her temp,
her respirations, her pulse, and her oxygen at home.</span></div>
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<span style="font-family: Calibri;">I remember walking into Keira’s bedroom this morning after
she’d left for therapy. It was quiet and cold and so empty feeling. At the
time, I thought, “At some point, when she’s gone, it could be really hard for
me to walk into this room. At some point, she won’t live here anymore. I hope
she comes back home today….how strange are these thoughts? Do most people
consider the death of their children so frequently?” I realize that that
consideration in her bedroom this morning could have been a foreboding premonition.
But, no. She’ll be there when I get back with the groceries. I’m so glad today wasn’t the last day. <o:p></o:p></span></div>
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Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-92231128702243126742018-01-19T16:19:00.001-08:002018-01-19T16:25:21.350-08:00Happiest Place on EarthWe were so incredibly lucky to get to join Grandma Janie and Papa Dave, along with Aunt Shelly and cousin Sam, to celebrate their 40th wedding anniversary in Disneyland in November. We spent 5 full days at the park and stayed right there at the Disneyland hotel. It was just marvelous. It was definitely a longer time in Disneyland than we would have ever sprung for on our own, but it was so, so worth it and I'm so very thankful. <br>
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I had heard that Disneyland was really great for people with disabilities, but I had no idea. Our only other theme park experience with Keira had been at Legoland 2 years ago, where they had very few rides, but the one that she could go on, they made us hold her up in front of the measuring stick to see if she was "tall enough," before ultimately having to call a manager. <br>
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After checking in at guest services, we got a special access pass that was good for everyone that was with Keira, allowing us to bypass many lines. But it didn't stop there. EVERYONE was so helpful and accommodating. There were people at the beginning and end of every ride to answer questions, tell us what to do with our wheelchair, etc. Keira was able to go on many of the rides. She either rode in our lap or, on a few of the rides, the whole chair could go on. As we've seen before, Keira really enjoys being outdoors and being with the whole family. But we think she really enjoyed Disneyland for all of the lights and sounds and smells that were new. Her favorite ride was probably the monorail between the hotel and the park. <br>
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The beauty of being at the parks for the better part of the week was that we didn't feel hurried to "get it all in." We could go to the parks for a couple of hours in the morning, then go back to the hotel, swim, nap, and return to the parks for a bit in the evenings. This also helped us bypass the heat, which was up to 100 while we were there! <br>
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It was just so fun to be somewhere where we ALL could have fun and Keira didn't seem to be an anomaly or hassle for anybody there. They were so completely inclusive and accommodating that I could consider forgiving them for the amount of money they charge for the experience. It was truly magical. Such a fun, fun way to spend Thanksgiving. It was truly a vacation for all of us. I believe it was the happiest place on earth. My mommy heart was overflowing. <div><br></div><div>Enjoy the photos!<br>
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<tr><td style="text-align: center;"><img alt="" id="id_f696_2364_4e30_972" src="https://lh3.googleusercontent.com/-NMUWfwVgvAo/WmKENldA0DI/AAAAAAAABhU/fxUrnkOUiqcF6JjvlHpx0BwFf2O0qh8MgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First night in the park; enamored with the lights of the carousel</td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_b481_2e7b_673c_69f0" src="https://lh3.googleusercontent.com/-M4f-csDRlAY/WmKEZk7enJI/AAAAAAAABhY/Irs4JowP-Z09rJnf4OYnjd_GSGwOsyioQCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cool headboard with a sweet lullaby and lights</td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_15d5_a35_7bf2_cdc2" src="https://lh3.googleusercontent.com/-5ehGqyOj6Rw/WmKEaLhRTAI/AAAAAAAABhc/XNVYA0G8iIYLR0T3BddBprTomXj6vN1hgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting to ride the Haunted Mansion</td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_a9f0_6276_fbd9_3a72" src="https://lh3.googleusercontent.com/-DzgNlU1MOB8/WmKEefOb-oI/AAAAAAAABhk/r6xkjhpS65E6G9jX90UdayDRLnlM70mkgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Serious talk with Snow White</td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_defb_31d_b39_d2f5" src="https://lh3.googleusercontent.com/-BU-dEaayhZ8/WmKFARP3rXI/AAAAAAAABiM/uHHu_BYLkIw98TWhnIOAhDtYxKMlnnG7gCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"You brought your dwarf! [referring to Jeff] Next time I'll bring my dwarves!"</td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_e037_df2b_6fb2_1b89" src="https://lh3.googleusercontent.com/-vJf23T8jVXY/WmKEyIhB1xI/AAAAAAAABh0/sVZ0TWwyynweXkyEyQukk-Yed85G9swLgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favorite. I could have kissed Snow White. </td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_b63f_253a_63a8_ccef" src="https://lh3.googleusercontent.com/-Z_R2XwZVS2s/WmKE4adnWII/AAAAAAAABh8/K_Lz3Uw2l9k5D3SCchIyqyyu7Evn84ncACHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying on Liam's new hat. </td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_b005_1c3d_e481_e243" src="https://lh3.googleusercontent.com/-DqlHlgcW3kM/WmKEppBUxWI/AAAAAAAABhw/ePsNh4Fqbcsoi7CBKfLHpvWj64JoRPDMgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love these two. </td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_95d8_5820_f535_1570" src="https://lh3.googleusercontent.com/-R5BCetcfHs8/WmKE11kNF4I/AAAAAAAABh4/jnStAjjMOxMEZHyEh-wCUiNZzkh0HMMqwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The whole crew. </td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_81b9_7652_8fd8_1902" src="https://lh3.googleusercontent.com/-AVMnQ2b7WsU/WmKFEAg5K4I/AAAAAAAABiU/mN0sZPyXDHYsE_IZ_NMQRKEQ6NhLJ_7LwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying The Little Mermaid ride. </td></tr>
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<tr><td style="text-align: center;"><img alt="" id="id_78be_63a5_3ae1_354b" src="https://lh3.googleusercontent.com/-5cY2AiWmh94/WmKFAH2DzKI/AAAAAAAABiI/huANNfPUffccQUO527w-CFP56opZeGbGgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; margin-left: auto; margin-right: auto; width: 298px;" title="" tooltip=""></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Character breakfast</td></tr>
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<br></div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-26884301606555629912018-01-11T20:02:00.000-08:002018-01-11T20:02:26.342-08:00 Wall of HopeSometimes it feels like we’ve had more than our share of pitfalls, toils, and debility. But life never, ever fails to offer hope in the most surprising ways. I received a phone call from a member of the March of Dimes back in November. The woman told me that nurses and staff at the St. Alphonsus NICU had nominated former patients and voted for Keira to be one of the two children added to their "Wall of Hope" this year.<br />
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Keira got her portrait taken. It may, in fact, be one of my favorite pictures of her. It doesn't show off her million dollar smile and shining eyes, but it does accurately capture her beautiful self as we see her 90% of the time.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi10ZxhVcp9bLw8J2sLKm6wcS5U8kpoDaGKQSOhx2REhyqD_jQRs_C58WXw8yQd5m6_0QfWeo8fVtWb5C8qpP8M3AXHhxZXxkqr16F2XxDzQUiRjzjdjGa7Oa78GYKuPLPfjyMySEfVGE-O/s1600/IMG_8967.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1068" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi10ZxhVcp9bLw8J2sLKm6wcS5U8kpoDaGKQSOhx2REhyqD_jQRs_C58WXw8yQd5m6_0QfWeo8fVtWb5C8qpP8M3AXHhxZXxkqr16F2XxDzQUiRjzjdjGa7Oa78GYKuPLPfjyMySEfVGE-O/s320/IMG_8967.JPG" width="213" /></a></div>
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They had a little ceremony to "reveal" the new installations on the wall of the waiting room outside the NICU. They explained that the Wall of Hope is designed to give hope to families who are currently in the NICU, wondering what will become of their new, fragile infant. I was pleased that they picked a child (Keira) who did not necessarily "turn out" the way that any parent initially hopes, but who affirms life and joy in the midst of it all.<br />
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Keira's behavior was fascinating. This is typically the type of environment she does worst in, and it started out that way...with her retching and needing to put her headphones on, etc. But then she seemed to catch on that this was about her and she became so smiley and engaged and interested. It was just adorable. </div>
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<a href="https://lh3.googleusercontent.com/-ZHugwZ__ovQ/WjQkw9RufTI/AAAAAAAABfQ/Z544zRFiaQcTkPUFmHonN6JkWPk0l1zuACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" id="id_26c3_1319_786c_bbc4" src="https://lh3.googleusercontent.com/-ZHugwZ__ovQ/WjQkw9RufTI/AAAAAAAABfQ/Z544zRFiaQcTkPUFmHonN6JkWPk0l1zuACHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /></a></div>
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The inscription reads:</div>
<blockquote class="tr_bq">
After a seemingly typical pregnancy, Keira was born at full term weighing less than 5 lbs. With a myriad of symptoms, she was rushed to the St. Al's NICU and was diagnosed with congenital cytomegalovirus (CMV). Keira stayed for 4 weeks to undergo an antiviral treatment. As a result of CMV, Keira cannot speak, eat orally, or sit upright. In spite of the discomfort she faces every day, Keira has an effervescent smile and is a joy to all who are lucky enough to know her. Keira's struggles helped inspire the passage of Idaho's first law furthering CMV prevention in 2017. </blockquote>
I gave a mini speech:<br />
<blockquote class="tr_bq">
Well...it's kind of surreal to be here. Even the smells, walking into this building, feels crazy. It was a crazy time. Most people, I'm sure, can't imagine giving birth, then being discharged from the hospital 2 hours later to follow their baby to the NICU. I thought she was going to be healthy. It was a whirlwind experience 5 years ago and we are really appreciative to St. Als and the NICU because we were just so disoriented, not expecting any of this, for her to be sick, let alone have the life long circumstances that she does. And this was place was just like a warm cocoon of a family that took care of us for a month and got us ready to go out and do what we needed to do with her. I'd like to say that parenting Keira has been and continues to be the biggest challenge I've ever faced, but probably the most rewarding as well. It just means so much to me when circumstances come up to make me aware that she is deeply impacting peoples' lives besides just mine. That just means so much to me. So, thank you for doing this. </blockquote>
Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-68430420800459197022017-12-14T22:17:00.000-08:002017-12-14T22:17:15.537-08:00Politics, Part 2<span style="font-family: "calibri";">Approximately one year ago, I wrote my first blog entry,
“Politics,” after agreeing to what I thought would be dipping my toes into CMV
advocacy. I soon became swept up in a tidal wave of activity and less than
three months later, we had actually passed a new law in Idaho. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">It’s one of those things. If you’d asked me 5, 10, or 20
years ago whether I had any interest in government, any inclinations toward
political advocacy, or any plans to incite change via policy making, I would
have answered with a resolute, “no.” And my dear friend who called to ask me to
participate in the Idaho CMV Advocacy Project, got me to reluctantly agree by
assuring me that for at least a year, my job would just be to meet with various
legislators and educate them about CMV and our concerns. That was the least I could
do, I thought. But my friend, already knee-deep, was ready to go and found that
one of the very first people, if not THE FIRST person she spoke with, not only
agreed to sponsor a bill, but found the topic so compelling that he saw no
reason for us to wait, as planned until the next political season to try to
push the bill through, but to go ahead THIS year! That meant NOW. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Well, how do you say no to that? This was quite possibly a
once in a life time opportunity and if someone is willing to sponsor your bill,
you don’t turn that down. Ok. What do I need to do? I had no idea. But I put
one foot in front of the other. One phone call led to another and another and
then a meeting and then a hearing, etc. It was a crash course in local
government. What’s a bill? How is it passed? Why do you need a sponsor? Actually,
why do you need a law? What’s a hearing? <o:p></o:p></span></div>
<img alt="" id="id_a09b_904_3939_a2f0" src="https://lh3.googleusercontent.com/-kDvI2BPtrpg/WjNmwBLkNcI/AAAAAAAABeg/RZQpe0a7qOM1XIa92ln_5wVUCsAn1r4fwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Before I knew it, I was swept up. On more than one occasion,
I’d be “sending out a few emails to legislators” at my kitchen computer and
before I knew it I was having to order pizza because the roast I was going to
put in an hour ago was still<span style="mso-spacerun: yes;"> </span>thawing in
the fridge while time flew by unnoticed. Day to day stuff would go undone and
the boys knew “Mom’s doing CMV stuff again.” One sponsor turned into two and
the three. Countless calls, emails, and in-person meetings with legislators and
their staffers, doctors and their assistants, radio, newspaper, and TV
journalists, other advocates and CMV moms nationwide.<span style="mso-spacerun: yes;"> </span>I wrote, edited, and rewrote flyers,
testimonies, and educational materials. I copied materials, stuffed folders,
delivered and mailed pamphlets. <o:p></o:p></span></div>
<img alt="" id="id_74a7_5b1_37f3_ff42" src="https://lh3.googleusercontent.com/-F1_uCUNcohk/WjNmwBVusCI/AAAAAAAABec/gWbT5cO4QE8pn7s8hhQK2AhdB0PY93ecQCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Of course, my three companions were simultaneously doing
very much the same thing. It was a job in which there was always more work to
do. Always more people to call, whether for an initial contact or to follow up
or to provide more information. And, in the end, we just did as much as we
possibly could before time ran out. It is my understanding that in Idaho, the
House and Senate leaders meet only from January through March of each year. So
if you want a bill created, read, heard, and/or passed, that is when you need
to do it. And after March, there are 9 months for the committees to forget
about you, and that’s assuming it’s a year in which the legislators and
committees will stay the same because they are not undergoing an election that
year. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Throughout this process, we felt that nearly everyone we
talked to was extremely receptive to what we had to say. Oftentimes, we would
start a conversation with a legislator cold by presenting them with the
following graphic, emphasizing that though they surely had heard of HIV, Downs
Syndrome, and Spina Bifeda they mostly likely had never heard of CMV. We then
went on to talk about our own children and our simple request for help in
raising CMV awareness. The response was typically and incredulous, “Why have I
never heard of this before?” Females noted that they had known to stay away
from fish and cheese and the cat litter box for things less common and/or
devastating. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNX9IibjqvJ_NKbK76KgXNoLd-j8B2l-LaRToWY8rRXNiWudMJOyFJRFm6Ohr8ZzXPjAeRnL9wc5sofeE99fWzJY0SvxOySJO74sKt5g0jHOBg0yj_q7zkgVApQIvszmtZa-kEDxl2O6u-/s1600/cmv_awareness.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="849" data-original-width="658" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNX9IibjqvJ_NKbK76KgXNoLd-j8B2l-LaRToWY8rRXNiWudMJOyFJRFm6Ohr8ZzXPjAeRnL9wc5sofeE99fWzJY0SvxOySJO74sKt5g0jHOBg0yj_q7zkgVApQIvszmtZa-kEDxl2O6u-/s320/cmv_awareness.png" width="248" /></a></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">Our goal for a bill, after a lot of research and
consultation, was for our state’s health department to give CMV at least the
amount of attention that it gives to other public health concerns that affect
pregnancy outcomes. That is, we wanted them to put CMV on their website, adding
educational information and frequently asked questions. We also wanted to the
department to issue informational materials that would be disseminated widely
across the state to physicians’ offices, daycare centers, and public health
service centers. Here is where we started to brush up against some resistance. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">The health department was a little hot and cold. Long story
short, they seemed to pay lip service to the importance of CMV education but it
was just that. Granted that they are pretty fiscally limited, particularly in
Idaho, we came to see that part of the hesitation was because of they blow back
that could ensue from doctors. Frankly, and understandably, the medical community
doesn’t necessarily want to take orders from the local health department
because the health department does not, by and large, house the leading
researchers and practitioners in each medical specialty area. Truly. It soon
became clear that I was far more educated about CMV than any of the point
people that I spoke with at the health department regarding the possibilities
of this project. “But why would doctors dissent if they are just handing out
educational pamphlets?” you might ask? Well, the arguments we heard were that
doctors already feel burdened by how much information they need to get to pregnant
women, so they didn’t appreciate having more. They particularly don’t
appreciate being told to distribute the information when there’s “nothing you can
do about CMV anyway” which speaks to the very necessity of the project in the
first place because CMV is actually quite preventable but many doctors don’t
realize that. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "calibri";">Confused? Refer to <u>Bekah’s
Way, WAY Oversimplified Illustration of Why It’s So Hard to Get CMV Prevention
Off the Ground<o:p></o:p></u></span></i></div>
<img alt="" id="id_2879_72b0_c8b3_a980" src="https://lh3.googleusercontent.com/-5B7hJju7gD4/WjNmud8LllI/AAAAAAAABeU/jeSnUTvDQzk6d50zkd5uC-A4wzpJuxHbwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">So, moving up the food chain a bit, many doctors are
under-educated about CMV and have come to believe that it is rare, it is not
preventable, and there is nothing you can do about it. All three of these
things are wrong, but not all of them are things that we (read “wee”) parent
advocates can tackle. Many doctors need updated education about how to detect
CMV and why that is important. And THAT is where we hit a road block. The
powers that be (Centers for Disease Control, Food and Drug Administration,
Academy of Pediatrics, American Academy of Obstetricians and Gynecologists, to
name a few), the people who actually write the book on the “best practices in
medicine” are a little behind (in my humble opinion) when it comes to keeping up
with the times in regards to cytomegalovirus. The last I heard, the standard of
practice for OB/GYNs upon learning that a fetus is affected with CMV is to
advise termination of the fetus. Period. That’s it. No mention of prevention.
No mention of treatments that have been proven effective (Cytogam) when used to
treat a child in utero. No mention of testing for CMV infection in a pregnant
mother. No mention of testing a child for CMV after birth. No mention of
treating a CMV infected newborn with antiviral treatments. Clearly this is territory
that is much more appropriately broached by the big wigs. The movers and
shakers in medical research, industry, pharmaceuticals, and policy making. The
current and accurate information needs to be used to inform the standards of
care that all doctors are required to follow in the United States. Without it,
my pamphlets in doctor’s offices are more likely to be seen by physicians as
pesky leaflets of pseudoscience legislated by a couple of angry mothers who don’t
understand the whole story. Although, excuse me, I think they are the ones who
don’t understand the whole story. <span style="mso-spacerun: yes;"> </span></span><div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "calibri";"><span style="mso-spacerun: yes;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8JwNQBcEvSDPsu-8lrdE-iHhR0omqlU-BOZi_kzCRjEqziJujV3Jn4E5qRhd3d2axecnEF1_YUjwF8yhwnHLepuTUeKNrlJmiUmyofDjxHqKrH7DJmO4U7zI_RYViRtIjADglOkFhc8G/s1600/stop+cmv.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="637" data-original-width="960" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8JwNQBcEvSDPsu-8lrdE-iHhR0omqlU-BOZi_kzCRjEqziJujV3Jn4E5qRhd3d2axecnEF1_YUjwF8yhwnHLepuTUeKNrlJmiUmyofDjxHqKrH7DJmO4U7zI_RYViRtIjADglOkFhc8G/s320/stop+cmv.jpg" width="320" /></a></span></span></div>
<span style="font-family: "calibri";"><o:p></o:p></span><br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">As mentioned, I believe that physicians in the U.S. are
generally under informed about CMV. And, if they are informed, they find little
support to do anything differently because of the current published standards.
For those few conscientious physicians, dealing with CMV is an uphill battle.
There is little guidance about when and how often to test for CMV. The evidence
for immunoglobulin treatments is mostly done on foreign soil and so is still
considered experimental in the U.S. That means it is extremely unlikely that
these very expensive treatments will ever be covered by insurance and could be
an enormous liability for the physician. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcs0Wqc_bKGM35ecQHTNALzD_7ll0KWQLdwEzyGtJzhLSn-AYx-sKuwOUIDly-xDDOvTNdNBgIgvkm0VZaKGNYjlcqJ-ELwuuzm_REWowhBhYx5KaSBGQj1VVFgMKZVlAu8UXhx4Ox9vq/s1600/cake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcs0Wqc_bKGM35ecQHTNALzD_7ll0KWQLdwEzyGtJzhLSn-AYx-sKuwOUIDly-xDDOvTNdNBgIgvkm0VZaKGNYjlcqJ-ELwuuzm_REWowhBhYx5KaSBGQj1VVFgMKZVlAu8UXhx4Ox9vq/s320/cake.jpg" width="320" /></a></div>
<span style="font-family: "calibri";">The more I understood about the nature of this problem, the
more discouraged I felt. Convincing the average citizen that CMV is an
important thing to know about and prevent is a pretty reasonable thing to do.
But once we get past local legislators and work up the chain to professionals
who actually know what is at stake with CMV and its treatment, the punier we
seem to be. And the more depressed I am to find that there are great big
politics, dare I say even corruption and decisions made based on wealth rather
than the health and well-being of the citizens and I almost wish I didn’t know
what I know. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">And with all of that, I just had to step WAY back and remind
myself to focus JUST on prevention. It gets too messy otherwise. But as you can
see, it’s difficult to talk about prevention without people inevitably wanting
to know about treatment if the prevention doesn’t work. It’s so sticky. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibG94wu9lZG2ItkqVv8d6ZbVwEgNBH9jds3yE9h6DzHg7-n2-NQotO8bPszOjNR9c2WYt2gjrrN2elrXXlbeMX34Uyr6ohLFgmwZgXyF9D3GVQNKMCrK0mkqwGm6NHz3N7f2Kim8qePlya/s1600/newspaper.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibG94wu9lZG2ItkqVv8d6ZbVwEgNBH9jds3yE9h6DzHg7-n2-NQotO8bPszOjNR9c2WYt2gjrrN2elrXXlbeMX34Uyr6ohLFgmwZgXyF9D3GVQNKMCrK0mkqwGm6NHz3N7f2Kim8qePlya/s320/newspaper.jpg" width="240" /></a></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">But it worked! Or, at least, we achieved our unlikely goal
of passing Idaho’s first CMV legislation on the first try. I am proud of that.
I do think we did something good. Something great, even. And I was surprised to
find that I have some skills that make me fairly good at advocacy including not
only a passion for the topic of CMV, but fairly good writing skills, comfort
with public speaking, and the ability to sound (mostly) like I know my stuff
when asked difficult questions on the spot. But the task and the process grated
on me all along. I felt like I was supposed to be a saleswoman. I am not a
saleswoman. All along, for reasons described, I wasn’t clear and confident in
our ultimate vision. I always disliked, networking, schmoozing, dare I say
kissing up to people I didn’t know. In this case often individuals I would
never, in a million years have voted for. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">There was a lot of psychological dissonance created in me,
too, when I was spending so much time and energy trying change the state of CMV
when… my daughter won’t be changed. In many ways, some explicit and some less
overt, I was preaching that my daughter is not ok. I mean, we had her in the
room of the hearing, essentially as a living, breathing example of everyone’s
worst nightmare and what we all want to avoid at all costs. When in ALL OTHER
SETTINGS of my life, I’m saying, “look at this lovely girl,” “there is so much
beauty to be seen here,” “there is so much to learn from her.” <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<img alt="" id="id_71c3_d552_8aae_4dbb" src="https://lh3.googleusercontent.com/-WDldsjy45G0/WjNmvssNZnI/AAAAAAAABeY/0xqRuI_g-CU2W17xpyr8shqodjrdCyoLwCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">We were commended over and over for our hard work and told
that it was an incredible accomplishment in such a short amount of time. Like I
said, people were very receptive to our stories. Keira and the other kids are
powerful! But I think the real reason why we had so little resistance is
because we are so low on the food chain in terms of making widespread changes
happen in the CMV world. There isn’t a whole lot that can be done from the
ground up, though that didn’t make it fruitless. But I do think that if we’d
been seen as a threat, a lobbyist from the Academy of OB/GYNS or another
organization could have squelched our success at hearings pretty easily by
telling some other select details. As advocates, we were telling only parts of
the story and knowing that it’s so much more complicated than what we are
presenting. It’s politics and we were playing the game just like everyone else.
But I don’t like the game. I don’t really want to play. I hate second-guessing
everyone’s motivations and intentions. It felt…gross.<o:p></o:p></span></div>
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<span style="font-family: "calibri";">That said, and for what it’s worth, I met many politicians
who I respect very much.<span style="mso-spacerun: yes;"> </span>I have a better
understanding of what they do for us as a community and I appreciate this work
that they do. I believe that they have good hearts and a genuine desire to help
people. They know how to play the game and are willing to play the game in
order to further the common good. My hat goes off to them because I’m just not
built to stomach it. <o:p></o:p></span></div>
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<span style="font-family: "calibri";">So what now? The new law was officially effective in July of
this year. The health department now has a budget of $15,000 per year to work
on this project and as far as I know, they are “actively” developing literature
that will be distributed across the state. And as for the Idaho CMV Advocacy
Project, we are still here, but probably only one of the moms still has all the
passion and drive as she did a year ago. A couple have all but bowed out after
the accomplishment of this year. Personally, I still consult with the group and
I speak fairly regularly with medical and professional boards and organizations
in the area regarding CMV prevention. There is some interest within the group
to continue with further legislation and there are several legislators who have
become passionate about the cause and are willing to support it. I, however,
for the reasons enumerated here, do not feel that I could confidently support
much more legislation before some major changes start happening from the other
end of the CMV food chain.<o:p></o:p></span></div>
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<span style="font-family: "calibri";">*** <o:p></o:p></span></div>
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<span style="font-family: "calibri";">Whew. It feels good, actually, to have written all that
down. I’ve avoided writing about it for a year, afraid that laying it all out
there might compromise our goals. Hopefully, we are far enough along now that
it won’t really matter. Or at least, if people care enough to read all of this,
they will understand my heart and therefore my reservations about working in
the political system. In the end, I figure, this is part of my story. And it’s
part of Keira’s story. And what good is the story if I don’t expose the dark
and twisty (thanks, Grey’s Anatomy) parts? <o:p></o:p></span></div>
Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-21206346934240776182017-12-14T19:29:00.000-08:002017-12-14T19:29:06.678-08:00BaclofenBaclofen is a medication for treating spasticity that Keira has been taking for about two years now. It was initially prescribed at a very low dose by her physiatrist, who told us it was best for us not to Google it and, rather, ask him if we were worried about the risks. To put it simply, Baclofen has serious risks of overdose and/or withdrawal. Patients also tend to require higher and higher doses when using it long term. We suspected going in that if Baclofen worked for her, she may eventually need a pump.<br />
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We saw good effects from the drug pretty much right away. Keira’s muscles were looser and she was more relaxed over all. Initially, she was extra enthusiastic and giggly, as if slightly inebriated, but that part subsided. Therapists noticed that her volitional movement increased and she was less dependent on her primitive reflexes and tone. It became clearer that with the decreased tone also comes less vomiting. </div>
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Over the past 2 years, the physiatrist guided us as Keira needed a higher and higher dose of Baclofen more and more often. We eventually added a fifth dose to be given nightly between 2 and 3 a.m. We can bet that without that dose, she'll wake in the morning in a puddle of vomit and will be extra irritable. </div>
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In April of this year, we had already reached the point where the doctor did not want to increase the prescription any further. He schooled us on the ins and outs of the pump and we decided to take the next step, an inpatient “trial” to see if the pump would be a viable option. We left that visit and waited for a phone call to schedule this one-day experiment in the ICU. </div>
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Weeks passed with no phone call and I came to find that Keira’s physiatrist had had a “family emergency” and would be out of the office for several more weeks. Weeks turned to months. Repeatedly, there was a day set for his return and then he would not meet it. There was no other physiatrist or physician competent to handle Baclofen issues in the Boise area, even at the competing hospital. </div>
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Keira's physiatrist was not even available for consultation or in case if emergency. I felt for his poor office staff who had to handle all of the phone calls from parents like me. I was a worried mess come July when Keira was due to have her next hip surgery. I was getting mixed messages with some clinicians advising that the baclofen pump surgery should come first, before the hip surgery so that Keira's high tone was less likely to damage the effects of the hip reconstruction. The hospital was supposedly working on credetialling another physiatrist so there would be some backup, but this was going to take months. We felt we had to do something, so we went ahead with Keira's hip surgery in hopes that the pump surgery would be close behind. The hip surgery went beautifully, but when the cast came off after 6 weeks, Keira's old patterns resumed in the way we feared, which threatens the longevity of those reconstructed hips. <br />
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The whole situation with the physiatrist felt so strange. I suspected that the doctor had either ended up in rehab or in jail. Otherwise, how could he suddenly be so completely unavailable? It also felt very tenuous. Here I am in Nampa with my child in this serious drug with no MD to help us any closer than Twin Falls. Nobody. </div>
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Finally, in October, just as it was looking like the backup physiatrist would get credentialed before ours would return, he died. Suddenly and unexpectedly. </div>
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This was heartbreaking. This specialist had really felt like part of our team. He was one of the first specialists that really seemed to<em> get it</em>. I loved him because he didn’t beat around the bush. He wasn’t afraid to call it what it was. He labeled Keira "medically fragile" and stated that we could never be certain whether she would wake up on any given morning. And at the same time, he wanted her to be happy and comfortable. He referred us to palliative care, one of the best connections we've got. He always asked how the kids were and recommended that my husband and I go on “wow” dates. One of our people, <em>one of Keira’s people</em>, was gone. </div>
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I was so disappointed. I couldn’t help but think that he must have committed suicide. Or overdosed on drugs. I have no sound basis for this presumption. It’s just a feeling I get after trying to read between the lines. His obituary was sparse; little more than birth and death dates. I feel so sad for him and his family and his patients. But also, frankly, a little angry at him. <em>You understood. You got it. And you opted out. It’s not fair! I can’t just check out; why can you? I thought we were a team.</em> It's a strange position to be in. As a patient, or, rather, the patient’s mom, there was no outlet or ceremony or designated space for grieving. I didn’t know him personally and therefore I’m not entitled to participate in any funeral or memorial. Yet because he really understood, it felt like we lost a fairly intimate relation. </div>
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For better or worse, the doctor’s death seemed to expedite things at the hospital. There is now a physiatrist in Boise a few days each month and available by phone. This doctor met us later in October for the pump trial. He is a wonderful doctor in his own right. He’s got a pleasant bedside manner, was comfortable with Keira and has first hand, meaning personal, experience with muscle spasticity. </div>
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Keira was incredible on the day of the trial. Typically, kids get sedated for the procedure, but when I pointed out to the doc how little Keira actually wiggles, he agreed to try without sedation. The procedure involved the injection the Baclofen directly into her spine (Like a spinal tap, I’m told) and Keira didn’t. Even. Cry. My guess is she was enjoying all the attention. There were probably 8-10 clinicians in the room at the time. Lots of observers because, once again, we were in territory that they don’t cover often. </div>
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After the injection, our job was to just sit back and observe the affects. We were in the ICU primarily as a precaution in case the drug suppressed her breathing. It was actually a pretty fun afternoon. There is no better way to describe Keira than “noodly.” She was absolutely limp and relaxed. Flaccid. Too relaxed, really, but the trial is really a firehose blast to see if the drug will work ultimately. <br />
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I was surprised and glad to see how limber Keira’s legs were. This was good news because it means that so far, the spasticity hasn’t actually limited her muscles ability to develop in length. Most astounding to me were Keira’s feet. In the past year it has struck me how more and more her feet are looking twisted and, well, deformed. With the relaxing agent on board, her feet looked utterly normal. </div>
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<img alt="" id="id_aea0_e771_5f7c_bedd" src="https://lh3.googleusercontent.com/-C9kE_7UUlTI/WjLsXd7tNSI/AAAAAAAABdw/FkPuVaFHtDkPcfzwgZqAGTkJlnDNBAJJgCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
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<img alt="" id="id_7db8_d09a_6fab_2d24" src="https://lh3.googleusercontent.com/-8lIJKUER23Q/WjLsYPT0asI/AAAAAAAABd0/5TnkeTMDeqsFv6a0k3maCvdrdUMxg29LQCHMYCw/s5000/%255BUNSET%255D" style="height: auto; width: 298px;" title="" tooltip="" /><br />
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Fast forward to December. Keira and I are sitting in the back seat of the van as we approach Salt Lake City. There is currently no neurosurgeon in Idaho who does pediatric Baclofen pumps, so Primary Children's Hospital it is!</div>
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Today we’ll meet the surgeon and tomorrow Keira will have surgery. She’ll have a hockey-puck sized pump put under her skin below her rib cage. Then a catheter will be threaded up her spinal cord as far as they can get it. The further up the spinal column, the more likely the drug will help her with her neck, shoulders, and arms; not just her legs. The pump works by continuously delivering microdoses of medication directly to where it needs to go, making it much more effective and efficient than oral Baclofen. The side effects are obvious discomfort from the implants, misplacement or slippage of the catheter and unplanned withdrawal or overdose. Also, we cannot adjust the dose ourselves, so we have to be in close contact with the doctor.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBLGhiltxLV1yh4XF6sVQnnA0cY_tufOkI4XPRanmAfrJCnf6pOZAyGRLbDTKkn9qoab1AE8tsfxlqRJGJxH4TSioCBYS7YM5-GpeJGlErq9DUA_9vjC1jemu_beirCvJX78QV6eNMHlII/s1600/pumpnbdy.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="220" data-original-width="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBLGhiltxLV1yh4XF6sVQnnA0cY_tufOkI4XPRanmAfrJCnf6pOZAyGRLbDTKkn9qoab1AE8tsfxlqRJGJxH4TSioCBYS7YM5-GpeJGlErq9DUA_9vjC1jemu_beirCvJX78QV6eNMHlII/s1600/pumpnbdy.gif" /></a></div>
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If all goes well, we should be able to come home on Monday. We'll keep you posted. As per usual, Keira's wonderful brothers are staying with Jeff's parents and my parents will be travelling to Salt Lake tomorrow to take some shifts on hospital duty. </div>
Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com2tag:blogger.com,1999:blog-9221275800076174555.post-40232081036169406342017-08-10T20:09:00.000-07:002017-08-10T20:09:26.672-07:00On Writing
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">“Rebekah, I think you are a writer.” <o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I laughed out loud. Partly due to the relief and release of
having the validation that my writing and my way of thinking are valuable. Partly
a nervous response to the inevitable anxiety and compulsion that would come
with increasing my commitment to this hobby.<o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’d been talking to my therapist about my tendency to have
to think through things to the fullest before I felt free to move on. Whether
it be a passionate feeling about something or a scene in a movie or a
perplexing social interaction, I so easily get hung up and feel a sense of
dis-ease when trying to move forward before I’ve completely processed/made
peace with/understood the circumstances and feelings at hand. Is it about being
in control? Is it about being artistic/creative/empathic? Do I have a slow
processing speed?<span style="mso-spacerun: yes;"> </span>I don’t know the
answer. But whatever it is, Jeff even agrees, I want to squeeze every last drop
of juice from the fruit in my brain. I want to appreciate the full meaning and
apply it to the best of my ability. I’d like to think that this, for the most
part, is a strength that serves me in positive ways. Perhaps it makes me more
open to understanding the experiences of others. Perhaps I more richly
appreciate aspects of this life that many don’t. Maybe. But, I know that it is
often a hindrance as I struggle to recognize my limits, relax and let go of
things that don’t make sense to me. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">“Rebekah, I think you are a writer.” <o:p></o:p></span></div>
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<span style="font-family: Calibri;">I’ve often mentioned to her that I want to write. But that I
don’t. There’s this really difficult push and pull. I really want to write. I
feel like so much has happened and that there are so many issues and
observations and considerations on my mind that are like caged birds wanting to
fly. <o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">There’s this method of therapeutic intervention called
narrative therapy. The whole idea is that patients will find comfort and relief
in narrating or re-narrating one’s own story. To clarify your history into a
somewhat linear story with a beginning, a middle, and an end, with main
characters, auxiliary characters, themes, a climax, and a resolution. It’s
probable that part of what I want from blogging is to create this type of
narrative. But lately, (as in, the past year or so), I feel less and less like
I understand how our day to day experiences fit into the story. I don’t quite
know what they mean or where they are heading. And so I don’t write. I feel
guilty writing very much without being able to tie it all up into a neat and
tidy bow at the end. It’s hard to write without being able to scrape together
some sort of optimism or gratitude. I really want people to read, but feel like
my writing, if I were to do it, would be repetitive and depressing and
self-serving. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">But I want to put it all out there. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">I’ve asked myself, why don’t I just journal? First off, I
kept a journal when I was a pre-teen or junior higher. A pink one with a little
lock on it. Much later (maybe just a year in those days), I came upon the
journal and upon revisiting the pages, I was so disgusted with my words.<span style="mso-spacerun: yes;"> </span>I was immature and silly and boring. I was
embarrassed. I threw it in the trash. I was pretty sure that my “deepest inner
thoughts” were junk and that I was a terrible writer. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">Fast forward two plus decades and I sure as hell don’t want
to sit alone in my own thoughts. In fact, I do enough of that already, without
keeping a journal. <span style="mso-spacerun: yes;"> </span>I want to be loved
and I want to be understood and I want, somehow, to make meaning out of the
trials and tribulations of my little life. For better or worse, I value the immediate
feedback that I get from blogging. The sense that others know me a little
better, that I’ve made good on my commitment to be vulnerable and transparent,
and that I’m not alone in my thoughts and feelings. <o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And then there’s the Swiss cheese. Since the beginning of my
blog, I’ve tried to be as real as possible, though always eliminating a few
topics for the sake of privacy, decorum and respect for those near to us. I
never talk about how our parents cope with Keira and I don’t talk about
finances or legal concerns. In the past year, it seems to me that these matters
have blossomed and grown substantially. Increasingly, there are things I need
to be especially sensitive and tactful about because of individuals and systems
that are involved in our world. <o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwAwfr8dgGzujzzBl0vPNzlQ3VniGTFbPlfb5iqdj7m0AUJe3Qp8eYZz7Fr5iBWDG-8bU3P9MYUnx2LrfslOY-zl_rJZh-C_95oRedv07Vx2AH1cm0VHKB4NmfyGCFo7wm9HZgpF0IPrs3/s1600/untitled.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="500" data-original-width="333" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwAwfr8dgGzujzzBl0vPNzlQ3VniGTFbPlfb5iqdj7m0AUJe3Qp8eYZz7Fr5iBWDG-8bU3P9MYUnx2LrfslOY-zl_rJZh-C_95oRedv07Vx2AH1cm0VHKB4NmfyGCFo7wm9HZgpF0IPrs3/s320/untitled.png" width="213" /></a><span style="font-family: Calibri;">It seems that the holes in this story have gotten so
numerous and large that the cheese is no longer even snack worthy. Issues with
therapists, clinics, nurses, and doctors are tricky to write about. Though I
don’t name names, in this small community it is foreseeable that some readers
would be able to identify the persons I mention. My political undertakings have
left me extra sensitive about online persona. As a networking exercise, I “friended”
many Idaho senators and representatives on Facebook, giving them direct access
to my blog, which, in turn, could influence the effectiveness of my CMV-related
endeavors. I also fear that sharing my story in a raw and vulnerable way could inadvertently
have a negative effect on Jeff’s and my ministry at church.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Should I take the risk and share? Or keep it to myself?
Somewhere in between?<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Regardless, I fear that my therapist has awoken the beast. I
was awake much of the night and awoke early this morning, narrating my life in
my head. From experience, I know that this is what happens before a spurt of
writing. Before an episode in which I produce a flood of writing with such
automaticity and energy that I can’t stop until I’m done. In the end I feel
exhausted, satisfied, and a wee bit anxious. I feel like I’ve just birthed an aspect
of myself that is right there online for others to consume. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So here I am, starting with a piece about how and why it’s
so difficult to write. But she may have created a monster. I’ve let loose and
am considering about going back to write about the events of the past year. <span style="mso-spacerun: yes;"> </span>I’ve wondered whether I should write more
about my own coming of age story, perhaps as part of a larger project, maybe a
book, someday. I’ve begun collecting quotes and images and books and articles
that speak any sort of new wisdom or intrigue me or that articulate specific
thoughts and feelings more astutely than I can myself. I’ve even wondered
whether eventually I’ll be contributing writing to the field of psychology.
Perhaps someday, for their licensing exams, psychologists will have to memorize
Hall’s Stages of Special Needs Parenting. Who knows? Thanks for the vote of confidence,
Barbara.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">In the meantime, bear with me? <o:p></o:p></span></div>
Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com2tag:blogger.com,1999:blog-9221275800076174555.post-25556887730300241882017-07-18T12:14:00.001-07:002017-07-18T12:14:39.811-07:00Flower GirlI have been paralyzed by the idea of blogging for the last couple of months. It's been a very rough year so far; for me, if not for Keira. Sickness after sickness hit us all followed by a fairly traumatic hospitalization for RSV for Keira, which was simultaneous with my work at the Idaho legislature and the passing of Idaho's first CMV law. Throw in a confusing, stressful, and prolonged exchange with a dear old friend, I was ripe for a bout of depression when the bill passed. And, in fact, when I got the news that we had indeed reached our goal after months of tireless effort, I did not celebrate, but burst into tears and yielded to the darkness I felt descending. I fell into a metaphorical pit that I didn't/couldn't climb out of for a couple of months. That's all been hard to speak of and I hope to elucidate it here at some point. <div><br></div><div>Fortunately, there was a very happy event this past week, a good time to venture back into blogging. I really do want to continue to keep all of our supporters in the loop and keep a real, raw account of her life and our process as her parents. <div><br></div><div>On Saturday, my sister-in-law, Stephanie married her love, Tolga. They felt strongly about including our kids, and particularly Keira, in their wedding. Liam, a "junior groomsman," pushed his sister, the flower girl down the aisle. </div><div><br></div><div>Though happy to be involved, Jeff and I were concerned about the big day for Keira. She has not been herself a lot of the time lately. We've also continued to find that Keira doesn't handle the heat well. She gets hot fast and cools down only very slowly. She doesn't seem to sweat much. Even 20 minutes on our back patio at dinner time in the 90 degree heat would have her retching and vomiting. The forecast for Stephanie's wedding, held at Sawtooth Winery, was 102. Needless to say, we figured we'd call her flower girl debut a success if she managed not to throw up during the ceremony. </div><div><br></div><div>We had lots of good help on the wedding day. Friends and family sat with Keira in one of the few air conditioned rooms indoors at the winery until picture time and then again til the ceremony. She was a little blitzed/dazed, as expected, but it was clear that Keira enjoyed her role in the festivities. </div><div><br></div><div>Grandma Sharyn lovingly sewed Keira's dress, telling her about the process as it unfolded and, finally, trying it in her and helping her finger the lace and tulle. We also did Keira's hair up nice, had her nails done, and put sparkly sandles on her to match the bridesmaids. While getting ready that day, Keira seemed to perk up, to some degree understanding that it was a special day. The best part was when I showed her the flowered garland that was to adorn her wheelchair and put a large bouquet of poppies and roses in her lap. This, it was clear, tickled her. </div><div><br></div><div>Like the little man he's becoming, Liam pushed Keira through the grass and stood with her at the front of the wedding. Keira held her head up and didn't retch. Don't get me wrong, it was a hot day, but the breeze was a blessing and the heat was forgettable during the lovely ceremony. </div><div><br></div><div>Grandma Sharyn and Grandpa Ron promptly took Keira home after the ceremony and she slept like a baby. The following morning, I reminded Keira of the previous day's events and when I asked her if she would like to wear her special dress to Sunday School to show her friends, her smile said it all. </div><div><br></div><div>Congratulations, Aunt Steph and Uncle Tolga! Thank you for loving us and including us in your big day! <br><br><img id="id_7b64_a4ee_4cd4_d77e" src="https://lh3.googleusercontent.com/-F-6Jujsh1Uk/WW5eG9TGhvI/AAAAAAAABcg/Ml8ZWz0UTL47xCj0nujhj-_SAAKxjioNACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br><br><img id="id_9f75_160a_a004_a9fa" src="https://lh3.googleusercontent.com/-CXVycfFINWk/WW5eG43lPbI/AAAAAAAABcc/p533IpVBDFEZi23hoK5wxbVGs8FtVLjeQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br><img id="id_3d03_8a10_56e0_e374" src="https://lh3.googleusercontent.com/-dyL_WN1m9cI/WW5eG2sOf0I/AAAAAAAABck/no6rNOPyzYAXCiiJxeJYKnF698MXcG-qACHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br><img id="id_aca4_93a5_ed11_4718" src="https://lh3.googleusercontent.com/-lrkbSWBJ7yk/WW5eGiNTDSI/AAAAAAAABcY/JYQdE0lP7tkUnK08V3NK4CzYdVwhEFT_QCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br><img id="id_27fc_1dd5_c3f1_97" src="https://lh3.googleusercontent.com/-npinODVTyL0/WW5eHrupQDI/AAAAAAAABcs/4Z22Ep4ezPsOZwx1s4lNHjbftJ7281WJQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br><img id="id_4c05_921a_f04b_9e11" src="https://lh3.googleusercontent.com/-Pq9CAMvFE3g/WW5eHPgd-CI/AAAAAAAABco/AsTg_uVDoh8FLQbE60MPH2eyTJTeBQskQCHMYCw/s5000/%255BUNSET%255D" alt="" title="" tooltip="" style="width: 298px; height: auto;"><br><br></div></div>Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-70787860715284453682017-03-08T07:44:00.000-08:002017-03-08T07:44:14.301-08:00Erica<span style="font-family: inherit;">Last month, I finally went into my family physician to get something to clear up the sinus infection I'd been harboring. While there, I took the opportunity to introduce my doctor to the Idaho CMV Advocacy Project and let her know what we were working on. To my surprise, she told me about another patient she'd had who, not long before I was pregnant with Keira, was pregnant with twins, and had discovered she had CMV. This patient had been referred to a specialist at the time, was able to receive immunoglobulin treatments in Boise, and her twins are now 5 years old and healthy as could be. My doctor offered to call this mother for me, to try to connect us in the name of CMV advocacy, and I accepted.</span><br />
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<span style="font-family: inherit;">I barely held it together in the doctor's office. As soon as I was out her door, I began to sob. This rocked my world. Treated? Here? At essentially the same time I was pregnant with Keira?? You won't often hear me complaining about life not being "fair," but that's what I stooped to that day. It wasn't fair.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">The patient contacted me before the end of that very week. Turns out we even had numerous friends in common and she had been following my story. She was interested in hearing more about our CMV prevention efforts and wanted to help. In my typical fashion, I laid myself bare for her...</span><br />
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<span style="font-family: inherit;">Erica,</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">How wonderful to hear from you. Thanks for contacting me! What a small world, huh?</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I had no idea about you, or your twins, until the doctor told me. I have to admit that as soon as I left her office, I just cried and cried. First, understand, that I am thrilled that your girls are ok and you got the treatment you needed. Stupefied, really. I've come to believe that my doctor was somewhat negligent and he SHOULD have known something was wrong with Keira. I think something I've told myself, though, is that even if he HAD figured out that I had CMV when I was pregnant, the chances, at that time, of accessing any sort of effective treatment from Nampa, Idaho would have been slim to none. Well, your story blows that assumption out of the water for me and brings on another layer of grieving, I guess. You essentially were pregnant at the same time and in the same place I was and you were able to save your baby. Makes me sad.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I'm sorry to dump that on you. If you've read my blog at all (THANK YOU, if you have), you know I like to be an open book. I hope to meet and bring you in on this CMV awareness stuff, if you are willing. But I guess I needed you to know that I might possibly inadvertently have difficult feelings around you and your family, at least for a little while. I hope I'm not totally oversharing.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">So, I was recently (within the last few months) asked to join two other women in forming the Idaho CMV Advocacy Project. There is another CMV mom, who's daughter is 11 and functions much like Keira, who lives in Sandpoint. The 3rd is a woman who is an audiology graduate student who was very involved in rolling out the CMV legislation when it began in Utah.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Our goal is to create legislation that will allow for increased education and awareness of CMV. We want to target doctors and pregnant women. Because CMV is more prevalent than even Downs Syndrome, we think that people should know as much about it so that they can take steps to prevent it. Reception has been surprisingly good from Idaho legislators and we are moving forward to a bill this year!</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">We actually have a print hearing on Tuesday and hopefully will have 2 other hearings follow soon after. I'm emailing/calling/meeting with legislators on a daily basis now.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I would love for you to be involved as much as you would like. Off the bat, these are the types of things you could do: Write a letter of testimony; attend one or more of our hearings to show support; testify at one or more of our hearings; email legislators; call legislators; visit legislators; help us with putting together and/or delivering informational packets, printing documents, etc; and other odd jobs (for example, right now I really need to put together some thank you gifts for our sponsors and I need to look into having some swag printed with our logo on it, etc.)</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Whew. If you've made it through all of this and are still interested, I would love to meet with you. This Saturday, before or after Upward, might be a good time to have coffee. What to you think?</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Take care,</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Rebekah</span></div>
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<span style="font-family: inherit;"><br />I so appreciate your honesty. I can only imagine the wave of emotions you experienced learning about my situation, and I appreciate you being willing to get to know me and my story. To be totally honest, I really struggle with guilt about our girls having a positive outcome. I have so many conflicting emotions surrounding our whole CMV experience that it's difficult to even articulate. </span></blockquote>
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<span style="font-family: inherit;"><br />I would love to get together for coffee this Saturday. And although the thought of speaking in front of legislature gives me all kind of panicky feelings, I am thrilled at the prospect of being involved. I would love to help wherever you need it most. </span></blockquote>
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<span style="font-family: inherit;"><br />Erica </span></blockquote>
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<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Though another friend warned me that this might be a terrible idea, Erica and I met for coffee early that Saturday morning. She shared with me her whole story, which is much more complicated, of course, than our doctor had let on.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Erica was falsely diagnosed with mono while pregnant and only through further prodding did she receive testing for CMV. As is commonly the case, Erica was advised to terminate her pregnancies. As this did not sit well with her, Erica did her own research (digging) and, finding that there had been overwhelmingly positive effects from immunoglobulin treatments done in similar cases in Europe, she was able to talk her doctor into consulting with a physician in France and, ultimately was able to acquire the treatments here in Boise.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">It was NOT an easy road for her. In fact, it was traumatic in many ways. In the end, Erica had two healthy CMV-free babies, but it was hard won and I do not, for a second, blame her for hunkering down with her family when they were all home from the hospital and mentioning CMV only once in a while over the next few years.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I was relieved and maybe even happy to hear Erica's full story. What kind of monster does that make me? I could only be her friend if I felt she'd had enough hardship and paid her dues? I don't want that to be true of me. It wasn't that I was happy she'd struggle, though, I realized. It was that with her story, my world still made sense. My story, my understanding of how Keira came to be could still be true. It wasn't that there was this whole other reality where CMV was easily diagnosed and cared for. Not at all. And we could relate to each other in this. I am so thankful.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Not only did Erica meet me for coffee, she testified during our print hearing just a few days later. Her unique story and experiences have added important depth and perspective to our approach. Erica dove in the deep end and has been a wonderful asset to our efforts. She has helped keep me level-headed, which can be a feat. She's built up my confidence in advance of our big meetings and calmed my anxiety after the fact. </span><br />
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<span style="font-family: inherit;">I've met her beautiful family, with 3 girls in all, and am nothing but thrilled for the life and the health they have. We've been friends for a whole month now! I'm so glad to know you, Erica!</span><br />
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Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-35867979574693461172017-01-28T19:29:00.001-08:002017-01-28T19:56:20.634-08:00CMV Call to ActionMany of you have asked me what you can do to help. Now's your chance! If you are reading this blog, or if you are a friend or acquaintance of mine, you know enough about CMV to write a letter for me.<br />
<br />
We have a print hearing coming up soon to pass the first CMV bill in Idaho. We want to have as many letters as possible at the hearing to provide to legislators.<br />
<br />
It doesn't need to be fancy. It doesn't need to be long. Just write a statement saying how you have been affected by CMV. Or how you have seen ME be affected by CMV. Tell them why you think it is important that there be more public awareness and education about CMV in the state of Idaho.<br />
<br />
Then email your letter to Idaho CMV Advocacy Project at <b><u>idahocmv@gmail.com </u></b>OR to me at <u><b>bekahelise@msn.com</b></u>.<br />
<br />
This means so much to my colleague and I.<br />
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If you are still reading...<br />
<ul>
<li>Most of you had never heard of CMV until you heard about it from me. </li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT!</span></li>
<li>Surely you've heard about Downs Syndrome, which affects 4000 U.S. children per year. Surely you've heard about HIV, which affects 100 U.S. children per year. You may have even heard of Toxoplasmosis (you know, the stay-away-from-the-litter-box-while-you're-pregnant one?) which affects up to 4,000 U.S. babies per year. CMV AFFECTS 5500 U.S. BABIES PER YEAR!! Prenatal care in Europe includes CMV prevention. Why not here?</li>
</ul>
</ul>
<ul>
<li>Some of you have told me that you asked your doctor about CMV and they said it's not that common</li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT! </span></li>
<li>1 in 150 babies are born with CMV. Of those, 1 in 5 have long-term disabilities because of it. </li>
</ul>
<li>Some of you have told me that your doctor said, "If you were infected, there's nothing you could do about it anyway." </li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT!</span></li>
<li>There are options for antiviral treatment and immune globulin injections for some women. More research is being done as we speak. </li>
</ul>
<li>Some of you have told me that your doctor advised you not to be around me or Keira for the duration of your pregnancy "to be safe." </li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT!</span></li>
<li>According to the Centers for Disease Control and Prevention (CDC), infected children should not be excluded from school or other settings. Children born with CMV pose no threat to their peers and are NO MORE OF A THREAT TO THOSE AT RISK FOR CMV INFECTION (ie. pregnant women) THAN WOULD ANY OTHER PERSON!!</li>
</ul>
<li>The information that is currently available to women in Idaho is NOT accurately or adequately addressing the PREVELENCE, the SEVERITY, or the PREVENTABILITY of CMV. </li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT!</span></li>
</ul>
<li>Perhaps most importantly, CMV is totally preventable....IF we know what to do. </li>
<ul>
<li><span style="color: red;">WRITE ABOUT THAT</span></li>
<li>CMV is most readily transmitted from wet saliva to wet saliva. Pregnant women most often get CMV from the toddlers they parent/work with. The best way to avoid CMV is to avoid sharing food, drinks, and utensils with others. Avoid wet kisses from toddlers. Practice good hand washing. </li>
</ul>
</ul>
<ul>
<li>PLEASE don't hesitate to cut and paste any of this information. </li>
</ul>
<br />
What are we asking for? We're starting simple. This year, we are hoping to pass a bill that will enable Health and Welfare to run an educational program and provide awareness materials to physicians and pregnant women all over the state.<br />
<br />
Here is our purpose statement:<br />
<span style="color: #191919; font-family: "calibri"; font-size: 16pt; text-align: justify;"><br /></span>
<span style="color: #191919; font-family: "calibri"; font-size: 16pt; text-align: justify;">The purpose of the CMV bill will ensure that the women of Idaho and their doctors have access to
the most accurate and up-to-date information available regarding
cytomegalovirus prevention, infection, and treatment. Appropriate dissemination
of this information will foreseeably prevent the infection of numerous babies
in utero, thereby saving the state of Idaho millions of dollars in the care and
treatment of various disabilities that are associated with
congenital cytomegalovirus infection. </span><br />
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<!--StartFragment-->
<!--EndFragment-->Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-84243340272798374272017-01-28T18:32:00.001-08:002017-01-28T18:32:55.114-08:00Where is the sun?This has been the week from hell.<br />
<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
It’s been an extremely unusual winter here in southern
Idaho. Usually, we get a few snowfalls per season, 1-4 inches each, and each
tends to melt away within a few days. If the kids are lucky, they get one snow
day. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
This year, the snow started to fall well before Christmas
and it has been white ever since. There have been numerous storms and the
temperature has not risen to melt it away in between. Nampa simply is not
equipped to remove that amount of snow so widely and frequently, so even when
our main roads have been clear, many people are still stuck in their driveways
or neighborhoods because of the snow and ice there. Ice melt hasn’t been
available in stores for weeks. I’ve lost count of how many snow days. 9? So,
the kids had Christmas break, then as soon as they were “back” at school, they
only had 2 days of school in 2 weeks. <o:p></o:p><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl2qcLHzbCXp-HsIf717vkWmU3uq3Oq4UFivv-Ne_Gz7SraP8ldM5szBZIIoDvtmgD2pBJDLO1CPHBkChRUjxoAEtZ1l5MC3sbvJ3Tf7ewgHyejbhf-t6mcyakHgo8Ldy1KL-PCz_JfnVG/s1600/IMG_6847.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl2qcLHzbCXp-HsIf717vkWmU3uq3Oq4UFivv-Ne_Gz7SraP8ldM5szBZIIoDvtmgD2pBJDLO1CPHBkChRUjxoAEtZ1l5MC3sbvJ3Tf7ewgHyejbhf-t6mcyakHgo8Ldy1KL-PCz_JfnVG/s320/IMG_6847.JPG" width="240" /></a></div>
<br /></div>
<div class="MsoNormal">
Frankly, I liked this forced slow down. Sure, it’s annoying
that our wheelchair van gets stuck so easily (the low rider gets high centered
pretty easily), but it’s been an unexpected blessing to have to rely on
neighbors and kind strangers. And it’s annoying that the first place snow seems
to get piled is in the wheelchair accessible spots, but with this much snow,
the parking lots don’t tend to be full anyhow. I liked the excuse to not have
to get dressed and get out. I’ve had excuses to call off of Keira’s doctors and
therapies that would not jeopardize our relationship with those caregivers. It’s
kind of felt like camping. We had nowhere to be and had to make the most of
what was right in front of us. We had to dig through the pantry and to the bottom
of the freezer and make do with what we had on hand, which tends to be a lot if
we think about it. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
It tends to be a lot if we think about it…. A lot of friends
and family were sick and tired of being cooped up long before I was. They were
stir crazy and angry that they couldn’t get on with life as planned. Even last
week, during Sunday school, <b style="mso-bidi-font-weight: normal;">I pointed
out how this weather has been an opportunity that reminds us how little control
we really have over our lives</b>. While warm and safe (most of us) in our
homes, we are being reminded that our lives are small and can be displaced by
something as insignificant (or so we usually think) as the weather. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
How righteous of me. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
The message in Sunday school that day was about a concept
called “holy fear.” The leader encouraged us each to think of fears we have,
big and small. She led us through some scripture regarding Old Testament kings
who did and did not lean on God in times of fear. My friend’s point, I think,
was to show us that the times when we feel worried or fearful are precisely the
times where we have opportunity to look beyond ourselves for help. The kings
who did it wrong were the ones who thought, “I’ve always been able to make it
work before, so I’ll do it myself.” She reminded us that our job as believers
is to walk right up to the precipice of our fear. We are not to stay in bed and
wait for someone else to do all the hard work. We are to march right into the
face of battle and there, at in the middle of hardest part, is where he will
ALWAYS meet us.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
I had 3 main goals for the week. First, I was going to go to
the doctor on Monday. After taking antibiotics for a week to help a supposed
sinus infection that I’d had since Christmas, I wasn’t feeling any better and
needed to get checked out. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Second, I was going to spend all day Wednesday and Thursday
at the statehouse with my colleague from the Idaho CMV Advocacy Project. We’d
spent a Saturday at the CMV Advocacy Academy, worked together to write and put
together dozens of packets of materials, and had appointments to meet with
numerous legislators over those two days to talk about writing a bill to
provide CMV education in Idaho. Dare I say, I was actually starting to have fun
with this process? <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Third, I was going to make some progress with figuring out
my debt with Social Security. A while back, Keira suddenly stopped getting
social security disability checks and we were told we were overpaid by $13,000
and needed to pay it back. That’s about 18 months’ worth of payments that they
had overpaid us, even though we had been updating them regularly with our
income information. Of course, the 10 pages of documentation that accompanied
the bill “explained” the debt, but if any of you have ever seen such a
statement you probably will agree when I say it may as well be written in Greek.
Or Martian. After calling the Social Security office, they told me that the
file could not be opened to answer my questions because the file had been
“terminated.” Meaning, I could not find out about why it had been terminated <i style="mso-bidi-font-style: normal;">because </i>it had been terminated. Fast
forward a couple of months, I have gone down several rabbit trails looking for
help and had finally come upon a disability rights group who seemed EAGER to
assist. After a phone interview, they said they would call within a week and
specify how, exactly they would be able to help. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Sunday night, Ronin was hit with a violent stomach bug. He
vomited most of the night. When he slept, I stayed awake, listening to him
breath, because I knew he was going to vomit again before he did and I cleaning
up bathroom is WAY easier than cleaning up the bed/bedroom/hallway. Monday I
took Ronin to the doctor because he was still feeling incredibly nauseous but
now was writhing in pain. <span style="mso-spacerun: yes;"> </span>After multiple
tests, they decided NOT to hospitalize him, and sent him home to rest. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Tuesday was spent nursing Ronin back to health. I
quarantined Keira in her room with her caregiver, determined to keep Keira from
catching this bug. It could kill her. I get a nap here and there. And I spend
too much time reading the news and looking at Facebook. I never cared about
politics. I figured that whomever was able to make it into such an office as
president of the United States, whether I agreed with his or her thinking or
not, we’d all be ok. I resent that I care about politics now. I don’t know that
everything will be ok. He might be a “good” businessman, but “the least of
these” are not good business.” My daughter is not good business. The poor, the
weak, the disenfranchised, the sick, the minorities, the abused…they are not
good business. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Tuesday afternoon I get a call from the boys’ school. Liam
is vomiting. I spend Tuesday night with Liam as he is awfully sick, unable to
sleep. “I’m here, at the precipice,” I thought.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Wednesday morning Ro still feels weak and yucky and Liam’s
stomach is just starting to settle. To leave them would mean that my mom would
have to care for all 3 kids, making it more likely that the germs would get to
Keira. Jeff, by no means, could take the day off. His Wednesday
responsibilities mean that if he took the day off, 4 other people would have to
as well. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
I didn’t go to the statehouse. Instead, I spent all day
doing laundry and disinfecting the house. Surely, I thought, everyone will be
better by tomorrow and I can make the Thursday appointments at the capital.
Wrong. Liam was throwing up again in the night. I couldn’t leave. “I’m at the
precipice,” I thought. My colleague kept me in the loop. She did an amazing
job. She got an excellent response from legislators and a bill is already
underway. I just cried as she told me the good news. Not so much because of the
good news. More so because I wanted to be there, damn it. At least, I’ll go and meet with my colleague on Friday morning before she leaves town. I’ll get the full update, make a plan for what I need to do to continue forward progress, and potentially meet some of the people who have offered to sponsor our bill.<br />
<br /></div>
<div class="MsoNormal">
On Thursday morning, Keira’s therapist calls. She’s
vomiting.<span style="mso-spacerun: yes;"> </span>Dehydration is a major risk
for this kiddo. We huddle over her all day, releasing air through the G-tube
trying to prevent further vomit, administering pediatlyte by the milliliter.
Twice I consider taking to the ER.<span style="mso-spacerun: yes;">
</span>First, because she vomits dark brown, which is highly unlike the color
of the clear liquids she’s been getting. Jeff disagrees because she’s acting
alright. Second, because she’s crying and sweating, out of sorts. Jeff
disagrees because at that point she’s tolerating fluids. We know from
experience that if we take her in she would definitely get admitted. We keep her
home. She gets through. I don’t make it to the capital on Friday.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Friday morning I open Thursday’s mail. One week later, I’ve
received a letter from the disability rights group. I’d expected a call, but
it’s a thick packet. This is promising. I read, “Unfortunately, the issue you
called about did not fall within this year’s case acceptance priority.” <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
That’s it. I’m so pissed off at this point, I don’t know
what to do with myself. I go for a drive. Why am I so upset? I ask myself? Why
is this so hard? It went so well at the statehouse. Why do I feel so crushed?
The answer? Because I am out of control. I want to think that I matter. That
most things are predictable and reasonable. This just sucks. <o:p></o:p><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixn7gr5Uh261PIxdyEo1U_Dc_tNx8-NRX788SEUPYIs6_rJRxy9PpT9GzGdhOCiHmHGbbT2d1ms9bh2AjVSdXMGuGM8F6JR-isz2Rvp9pgIKgbcEnfYTIGevB7SHA2x-Nb62gbhSF4Fvct/s1600/IMG_6927.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixn7gr5Uh261PIxdyEo1U_Dc_tNx8-NRX788SEUPYIs6_rJRxy9PpT9GzGdhOCiHmHGbbT2d1ms9bh2AjVSdXMGuGM8F6JR-isz2Rvp9pgIKgbcEnfYTIGevB7SHA2x-Nb62gbhSF4Fvct/s320/IMG_6927.JPG" width="320" /></a></div>
<br /></div>
<div class="MsoNormal">
And I realize I’m eating my own words. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
And then it’s Friday night and Jeff is finally home and I
sleep for nearly 18 hours.<o:p></o:p></div>
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<div class="MsoNormal">
And I realize that God was there. Is here. Nobody was
hospitalized. We are all resuming health. The CMV bill is making progress. And
the social security debacle isn’t finished yet. But it’s not what <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">I</i></b>
wanted. <o:p></o:p><br />
<br />
Give me a just a few more hours to pout.<br />
<br />
Then my goals for the week will be 1) Go to the doctor to check out this darned sinus infection, 2) proceed with what needs to be done to get the CMV bill through and 3) make some more phone calls to try to find a responsive person at the social security administration. </div>
Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com0tag:blogger.com,1999:blog-9221275800076174555.post-13400638697546897812016-12-13T14:45:00.000-08:002016-12-13T14:45:08.145-08:00Falling ApartIf you've followed my blog for long, you know that after Keira was born, I fairly quickly accepted the idea of her diagnosis and, as a result, our new life. However, for a long time, I lived on edge, believing, anticipating, that "one of these days," the truth of it all would really hit me and I would fall apart.<br />
<br />
I've "fallen apart" a few times in my life. By that I mean the emotional, physical, spiritual, and practical result of feeling utterly devastated, disappointed, and/or depressed. Falling apart is feeling so disrupted, so distraught, that it's difficult to carry on with life as you had before.<br />
<br />
Eventually, with a lot of assurance from you, friends and family, I came to believe that perhaps I would not decompensate after all. Perhaps I was doing alright. Perhaps falling apart wasn't inevitable.<br />
<br />
I wanted to confess that it happened. In the past month or so, I did fall apart. The funny thing is, it had nothing to do with Keira. Without sharing details, I will tell you that a hurtful memory from my past made itself relevant again through a well-meaning friend. And BAM! Some hurt that had lain dormant for many years hit me like a ton of bricks.<br />
<br />
<strike>I cried.</strike> I sobbed. A lot. I couldn't eat. I had bad dreams. I went to work and couldn't work. I couldn't concentrate. I felt utterly miserable. What happened is that these memories came up and awakened feelings in me that I <i>hate.</i> I felt ineffective, out of control, humiliated, and needy. Once I got over the embarrassment of being so consumed by these feelings after so many years, I began to see the picture more clearly.<br />
<br />
Years ago, I had neatly swept these ugly feelings under the rug, associating them not with being human and being part of myself, but filing them away under that time of my life. Encountering memories from this time of my life not only pulled back the rug, it shook all of its filthy dirt out all over my living room.<br />
<br />
I'm able to see now that my falling apart has little to do with the circumstance of my past, but rather the confrontation with parts of myself that I abhor. My true work in the past few weeks has been to begin addressing these feelings, recognizing them to be utterly human and acceptable, and incorporating them in to my life as opposed to sweeping them back under the rug.<br />
<br />
Why do I mention this on Keira's blog? Because I believe it's vital to my understanding of who I am, which, in turn, will affect my outlook as a parent. Becoming a more whole person doesn't always happen in the ways we expect. We all have big blind spots. And they effect everything. If I'm able to accept that I'm needy, dependent, and imperfect, it changes things. It changes the way I love my husband, the way I parent my kids, and the way I advise others. And I want you to know, it's HARD! I very clearly had the option of sweeping everything under the rug, or pulling it out and looking at it. And, let me tell you, looking at everything in broad daylight can be gut wrenching and humiliating. But it can also be empowering, particularly if you feel supported by the people who really matter to you in your life.<br />
<br />
When I was at my worst in the past few weeks, a couple of things really spoke to me. First, in the Living Christmas Tree program this year, Mary had a touching monologue.<br />
<br />
<blockquote class="tr_bq">
...Why would you choose someone like me to carry the Savior of the world? I have no power or authority; why didn't you choose someone people would trust and believe in? Did you have to make it so hard on yourself? </blockquote>
<blockquote class="tr_bq">
Why did you come as a sweet, helpless, naked baby? If you had come to earth as you deserved everyone would have known your power and strength. If you had come to us like that we would have had no choice but to bow before you and honor you and praise you- just as the shepherds and wisemen did. </blockquote>
<blockquote class="tr_bq">
But you didn't want to demand our reverence or compel our worship, instead you wanted us to come to you on our own. You knew you had to meet us right where we were...where we are, didn't you? </blockquote>
<blockquote class="tr_bq">
You came for each and every person you created and you knew each of us by name, even before the beginning of time. You have walked along side us every step of every day. Wealth and stature mean nothing to you - you love the poor and powerless just as much as the powerful and strong. You love us all...there is no place so far that your mercy can't stretch, no pit so deep your grace can't reach, nothing can separate us from your love, there is nothing we can do to earn your love.</blockquote>
<blockquote class="tr_bq">
No one has run too far, sunk too low, or cursed you too many times to call on you. All we have to do is call your name and declare that you are our Lord and Savior. I was nothing, I had nothing to give that couldn't get from someone else; my willingness is all you asked for.</blockquote>
Secondly, as part of advent, our pastor has reminded us about the stump of Jesse. Think about how, in order to keep a rose bush, or our apricot tree, healthy, we prune those suckers back to mere stumps. Just a few bare, ugly branches. But they get pared down like that, back to the very base of the plant, to encourage it to grow all the more. Pastor affirmed me, too, by reminding us that, most of the time, God isn't interested in delivering us out of the pit. Rather, he wants to shape and build our character through the circumstances we are in. I'm holding on tight.<br />
<br />
I am independent AND needy. I am generous AND selfish. I am joyful AND miserable. I am effective AND useless. I am worthy AND unworthy.<br />
<br />
I cannot keep my mouth shut. I ache to be known by those around me. In telling my story, I find tremendous support and added confidence. And I hope to be an encouragement to you, too. <br />
<br />
Merry Christmas.<br />
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Rebekah Hallhttp://www.blogger.com/profile/13432241336120454462noreply@blogger.com2