Tuesday, March 5, 2019

Corwyn's Cause

They 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 https://www.corwynscause.org/


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.

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.

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.

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!

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.

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.

                                                                                                                                       -Bekah Hall





Monday, February 18, 2019

Ears, Part 2

The 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.

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.

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.

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.

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.

I love you all for reading and supporting us.

*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.


Wednesday, February 13, 2019

Ears

CMV 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.

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.

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.

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 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. 

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.

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.

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.

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.

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."

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! 

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. 

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. 

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. 

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. 

Keira's response to the Tobii was really incredible. It broke my heart and made it soar all at the same time. 
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. 

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!

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. 

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. 






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. 

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. 

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. 




Friday, February 1, 2019

Turning 6





Just like that, another year has gone by and, as is the case with all kids, year 6 brought some interesting changes.

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.

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.

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.
Keira and Grandpa at the tea party

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.

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?"




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!"

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.

"Now it's time to play." She reported which kids were going to be on which team....

"My team is up to bat first. Who gets to go first?"...

"I do!"

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.

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.

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.



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.

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.

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.


















This summer, I discovered that Keira LOVES strawberries.


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.
 

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!



Tuesday, January 22, 2019

Merit badges

Last year, on our first drive to Salt Lake City for Keira's baclofen pump surgery, Jeff had me in stitches. I was telling him it felt like we'd reached some rite of passage, like we had "leveled up" somehow as special-needs parents. I mean, in one trip, we were going out of state for a surgery AND staying at a Ronald McDonald House for the first time. This had to be worth something. Jeff suggested that we should be earning badges left and right. Where scouts earn badges for camping, cooking, and emergency preparedness, we started creating badges all our own. In our spare time (ha!), we'll totally create these unique badges along with very special sashes for all of us in the special needs scouting program.

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.

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.

Here are some of the special needs parenting badges we had in mind:
  • Out of state medical care badge
  • Ronald McDonald House badge
  • First IEP badge
  • 5+ medical specialists badge
  • 10+ surgeries badge
  • Participating in special needs legislation badge
  • Made a wish (Make a Wish Foundation) badge
  • Adaptive equipment designer badge
  • Firing a therapist badge
  • Honorary RN badge
  • Honorary MD badge
  • Honorary service coordinator badge
  • Honorary secretary badge
  • Honorary therapist badge
  • Unrecognized medical discovery badge
  • Wheelchair worth more than your car badge
  • Snake oil badge
  • Using your child as a scapegoat to avoid unwanted social activity badge
  • Handicapped placard badge
  • Near death experience badge
  • Successful insurance appeal badge
  • Lawsuit filed badge
  • Still married badge
  • Typical siblings are reasonably well adjusted badge
  • Blogger badge
  • Advocacy/prevention/awareness badge
  • Home medical equipment badge
  • Home modifications badge
  • Clinical trial participation badge
How many have you earned? 




Friday, January 11, 2019

Keira’s remodel

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.

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.

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.

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.



Let me give you a tour...

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.











This is the old laundry room turned new guest bath. Not quite through with the decorating yet, but I really like it.

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. 

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.


More pictures of the new space. 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.

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.)



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. 


And THIS is how happy we are about the remodel.




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. I texted Jeff, "We did a good thing. This was so worth it."




Tuesday, January 8, 2019

Welcome back!

It's been too long. 

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. 

I've found it increasingly difficult to write, though. Obviously. 

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. 

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.

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.  

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.

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!