I Made Pie!

It's the little things that indicate that I'm feeling a little more normal. I find myself listening to the radio in the car. I invite extra boys over to play at our house rather than sending my boys off to someone elses'. I clean out my closet. 

My first clue, about a week and a half ago, was that I made pie. What an extravagent use of my time and energy! To engage in a "project" that had so many steps (going to the store, requiring my full attention for a bit, dirtying the kitchen, 90 minutes to bake, 2 hours to cool) and wasn't directly related to the well-being of one of my children seemed like a wild and crazy thing to do that hadn't happened in ages. A friend came over and held Keira while I rolled out the crusts. It was a blessed day.

Keira has bounced back after surgery so much better than any of us expected. Like a newborn, she's gained an ounce a day since the surgery- nearly 2 pounds last time we checked. The GI doc and I practically did a dance when the scale read 19 1/2 pounds. In fact, he put her on a "diet," of all things, saying she couldn't continue to gain that fast. 

Everyone is noticing that K is more alert and interactive since surgery. She moves her head back and forth much more and uses her arms, in particular, with more volition. It's been a lot of fun using her stander because she seems to like it too. First, we put on her AFOs (ankle/foot orthotic) to hold her feet steady, then we strap her into the stander. I've tried to take pictures of her in it, but I think it's a had-to-be-there sort of a thing. The photos tend to look like she's in some old torture device. But most of you probably saw the video I posted recently on Facebook (Not sure why I can't get the videos to upload directly in my blog) and it's incredible. As opposed to sitting on her high chair or stroller, in the stander, she's able to muster strength all the way from her feet and we see her moving her head and arms like we'd never seen before. It is so encouraging to see her purposefully knock down a tower if blocks. I really didn't think those blocks, bought for Liam and used by Ronin, would ever be played with again. Moreover, the facility with which she's moving her head and arms allows for so much communication. She's making it clear that she understands some basic turn-taking, and that she recognizes words of things she likes (bath, shower, stander, swimming, brother, grandma). These little miracles bring lots of hope and possibility. 

My biggest struggle with Keira lately is the wrestling/juggling/drowning in her therapies. I'm pretty sure it is either impossible OR would take a robot of a parent to do all the therapeutic appointments, exercises, and equipment use at their therapeutic levels. I imagine my brother could draw a pretty funny illustration of K sporting all of her devices at once: the theratogs, the hand splints, hip brace, AFO's, and stander, while swinging on the trampoline and listening to music. Ben? 

The current solution? Well, the theratogs and hip brace are on hiatus because it's HOT. Hopefully we'll get back to that later. 

We're also happy that one by one, doctors are going by the wayside. No more ongoing appointments with the surgeon or endocrinologist. She doesn't have to see the audiologist or opthomology at for a year! She'll still have as many, actually more, therapy appointments (OT, PT, speech, feeding, and swimming) but 3-5 appointments per week is much more manageable than 6-8. 

With 2 weeks until school starts, the  boys have just finally started having some downtime. Some opportunities to be bored. I worked pretty hard to make arrangements for them all summer so that they wouldn't have to go to doctor appointment with K and me. It was a valient effort with mixed results. The boys missed me and vice versa. The extended time away from parents took its toll. I'll be ready for the school schedule to return. 

In sum, we're happy to be on the upside again. And my apricot pie with coconut crumble was delicious! 

Adventures in Medicine

I'm overdue for an update about Keira's latest surgeries. June was a loooong month. To my dismay, her surgery date got postponed for 3 weeks. Not only did this mean having to re-arrange all of our schedules again, it meant continuing to essentially force-feed Keira much more than she wanted to eat and deal with the reflux/spitting up, etc. This was important in order for her to not lose weight before surgery. 

Since we had some extra time, we decided to go on a weekend camping trip (Keira's first), the weekend before surgery. I think, for the first day at least, she enjoyed being outside in the sun and the breeze, listening to the kids play, etc. She seemed overwhelmed and done with it all halfway through the second day. It didn't help that she got her first sunburn that weekend, too! Her weight was also down a bit on the day of surgery, but just within the limits to proceed as planned!

5 am. On our way to the hospital

Being back at the hospital was strange. Not quite homey feeling, but familiar. The smell of the sanitizer, the faces of many of the nurses and staff, the location of most things in the hospital room. That first day, for me, was a weird sort of relief, I think, in knowing that they were going to take care of her. I really only recognized that, though, in contrast to what Jeff was feeling. He was more anxious about the whole thing this time than I was. Not to say that I wasn't on edge a bit. I nearly cried when we went down to the cafeteria for breakfast, when K had finally been taken back for surgery, to find that it was closed for remodeling. 

K was in surgery for 5 hours. In total, there were 5 procedures: the button, the fundoplication, a hernia repair, tubes, and adenoids. This picture of Keira and Jeff's hands was shortly after she arrived in the PICU. They kept her on a respirator and quite sedated for awhile, so that she wouldn't disrupt her abdominal stitches.

The next couple of days, it was difficult to keep her comfortable. If she was too comfortable, her blood pressure dropped. If she wasn't sedated enough, she'd hold her breath (in pain, we think), and her heart rate would spike.

As the days went by, Keira got more and more comfortable, the cords attached to her started at 8 and trickeled down to 0, and they slowly started putting food in her stomach. The food was a tough issue and the main reason our stay stretched out to 8 days. Sedating meds and pain meds both slow down the digestive process, so waiting for that to pick back up took a while.

Day 5, we stepped down to the pediatric unit. The fact that Keira and I could both fit in the "crib" was a beautiful thing.

Day 6: We took her to the playroom. This is out on the patio. She got some fresh air and put her feet in the bead bin.

And on Day 8, we finally came home. Jeff and I were (are) both really exhausted, but K is doing great. She seems much more energetic. We notice her turning her head back and forth more and generally having more stamina. We continue to bulk her food up a little bit every day and though she doesn't always like it, we're moving at a pretty steady pace. She'd gained a pound already at her one week post op appointment! For better or worse, much of her therapy activities are stalled for the time being, just focussing on keeping food in at the moment.

The boys finally came home a few days after Keira did. They went on a wonderful vacation and while K was in the hospital they were doing stuff like this:

 And this:

Rough, huh? It actually worked out quite nicely to have them gone during that time, but I'm so happy to have them home. 

Look how happy!

Once again, we appreciate all the care and concern from the many people who love us (Bekah and Jeff) and love K. Your support (visits, texts, meals, cards, etc.) makes all the difference to us. If you pray, continue to pray for rest and peace and stamina for both Jeff and me. Life with K expectedly has it's highs and lows. For whatever reason, it's feeling harder to get back into a groove this time. 

Still Grieving

When Liam was born, I was a fairly isolated and overwhelmed new mom. Liam's pediatrician noticed and recommended that I attend a Moms' group on Melrose in downtown Los Angeles. The group was comprised of a half dozen other moms, all of whom had given birth to their little ones within about 6 weeks of Liam's birthday. The group was run by a counselor/nurse who let us talk about our birth experiences, gave us tips on nursing, attachment, sleeping, and infant development, and taught us to sing and dance with our kids. I found it so valuable that most weeks I would drive an hour through traffic from Duarte with an oft-crying Liam to attend these groups. Ever since, in the back of my mind, I've thought that someday I might put something like that together for new moms in my area. And now, as a psychologist at NNH, I have a pretty good setup for embarking on this specialty when I'm ready.

Now, I don't profess to be ready for this quite yet, but I sure do need some CEU's (continuing education units to maintain my license to practice psychology) and I do love Seattle and it just so happened that some of the leading professionals in the field of infant mental health were putting on a conference in Seattle last week....so I signed up.

I was excited to go. I wasn't nervous. I flew to Seattle, hung out with my brother and an old friend, stayed in a fancy hotel. The morning of the conference, I enjoyed the continental breakfast and rubbed elbows with an OT from California. But to my surprise, we were about 3 slides in to the presentation and I was in tears. Like...uncontrollable tears. The renowned speaker was showing pictures of infants, discussing how to recognize when they are content, overwhelmed, etc. The discontent babies were upset like typical babies get upset: they were too tired or too cold or needed to poop. I realized in that moment that I could force myself to stay in that chair and have an emotional wrestling match for two days or I could bag it and try it again in a couple of years.  So, bag it I did. I went to my room and cried for awhile. Then I went shopping and hung out with my brother some more and went home early.

I was kind of embarrassed and ashamed about the whole thing. Some people I know seemed to think, "Well, of course that would upset you!" And I felt deeply disappointed. I really wanted to be ready to sit through the conference. Apparently I don't have superhuman powers of psychological compartmentalization. I'd been talking with a friend who had reminded me that grief can be "tricky" and that it can sneak up on you in ways you don't expect. That evening I came across this quote by C.S. Lewis:

"Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape---Sometimes the surprise is the opposite one you are presented with, exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn't a circular trench. But it isn't. There are partial recurrences, but the sequence doesn't repeat."

I found my heart sinking when I watched babies being toted around the airport. I don't like feeling that way. Having just finished The Still Point in a Turning World I thought, "maybe I should look for a new book. Maybe some other parent out there has written something I can relate to. Maybe there is some sort of special needs parenting book out there." My initial search on Amazon turned up the following titles (I'm not kidding): Shut Up About Your Perfect Kid, The Elephant in the Playroom, and My Baby Rides the Short Bus. Seriously? I wanted to throw up a little. So, then I sought out the online message boards. There are Stop CMV, CMV Mommies, CMV Advocacy Group, and CMV Stole My Child (My personal favorite--just kidding). Sigh. I didn't like those either. I started reading and found that it felt too taxing to learn about other moms and their kids who are functioning a) better than or b) worse than Keira. I know. Doesn't leave much, does it? If I'm turned off by all of these options, what kind of support to I really want? Do I want people to feel sorry for me? Do I just want to know the future? In the end, at least this time, I decided to take a deep breath and just keep putting one foot in front of the other.

Last week was insane. Keira was scheduled for 8, E-I-G-H-T appointments! It seems there is nary a body part or function whose corresponding specialty physician does not want to try to fix. I often leave appointments with another appointment or two. The sum of last week was a blood draw, a prescription for foot braces (in addition to her hip brace), a referral to a dental specialist, and a surgery date. This is K flirting with Daddy while waiting to see the surgeon.

The surgery, that I mentioned before, is sounding like a bigger deal than we originally thought. She's getting the fundoplication/nissen, a button (instead of the long tube out of her belly), ear tubes (her 3rd set), and an adenoidectomy. Of course, the nissen is the biggest deal. They actually take part of the stomach, wrap it around the esophagus, and suture it nearly closed to prevent food from coming back up. They are not real clear on exactly how/why it works and there are some scary sounding possible side effects. The surgery is expected to last about 3 hours and is scheduled for Friday, the 13th. Keira will be in the ICU on a respirator for about a day following the surgery. She's expected to have to stay in the hospital for 7-10 days. This is because they (I) have to find the delicate balance between getting Keira to eat as much food as possible without retching. Retching is basically the word they use for "trying to throw up when she can't throw up anymore." The retching could rip out the sutures.

My hope is that the surgery will make K more comfortable and help her keep more food down. That keeping more food down will help her gain more weight. That gaining weight will give her more energy to progress and that maybe, just maybe, we'll see more purposeful movement, more communication, etc.

What I worry about most when it comes to a hospital stay for Keira is the boys. Liam and Ronin are awesome. They don't want sissy to be in the hospital, but look forward to getting to hang out with Grandma Janie and others. I hate that they get my attention last, but I'm pretty sure it's more of a  problem to me than it is to them. In fact, I should probably wrap this up now so that I can feed them some dinner...

This is K today. This past few days, we've given up on feeding her orally altogether. We're tube feeding her day and night because she had lost a few ounces again and, ironically, they are concerned about doing the surgery if she doesn't weigh enough.

Please keep us in your prayers. I'll keep you posted about how K is doing after surgery.

Snippets

I find it hard to get down to writing lately. In my mind, I debrief myself from almost every encounter having to do with Keira with, "How would I write about this in my blog?" But then, often, I don't write. Nine times out of ten its because I feel like the text I'm writing in my head is too monotonous and negative. Though that may be somewhat true, in some ways, in how I think about Keira, but it really isn't true about my life in general. So another month has past since I've written, but here are the highlights that are still nagging for me to write them.

~~~
While outside playing a while back, a six-year-old neighbor girl was playing with K and asked me, "When is your baby going to grow up?" I love that she asked me that. And I wish I knew the answer!

~~~
Surprisingly, one of the most stressful things that I did with Keira recently was taking her to the zoo with me while chaperoning Ronin's field trip. I spent the day with a sizable group of parents who don't know me or Keira. I had a resurgence of that uncomfortable feeling like everyone's looking at her, wondering what's wrong, etc. etc. I feel like I want to just launch into what's "wrong" with her to just get it over with, but I don't. I know it's more awkward for me than anyone and that I'm assuming people are way more curious than they actually are. It was uncomfortable for me, nonetheless and I was always relieved when someone would just venture to ask, "What does she have?" I also had a strange moment when Ronin came up to me to say, "The other kids are laughing at Keira." Ug! "It's begun," I thought. Ronin couldn't tell me why they were laughing or what they were saying, so I opted to give them the benefit of the doubt and just told Ronin to ignore them.

~~~
A few weeks ago I had a "normal" day that left me feeling victorious for several days thereafter. On that particular Friday, I used very little of my mom's help. I ventured to take Ronin and Keira with me on a shopping trip to Costco. I figured a new way to try to transport her and Ronin thought it was great, too. It was a little cramped for groceries, but grocery shopping felt like a very normal thing to do. To top it off, I took the two of them swimming later that day. Keira seemed to really like the water (but if I had a dollar for every time someone thought she was "asleep" on the kick board!!)

~~~
I'm loving the "baby spanx," a.k.a. Theratogs. We've had a bit of trouble getting them to fit comfortably around K's G-tube, but they really make a difference! The extra snuggness around her middle has Keira moving her arms and legs more and she is holding up her head again like we haven't seen in months! See that little push up on my lap? That's huge progress!

~~~
People ask how Keira is doing and I'm never quite sure how to answer the question. She is happy and healthy, but she is hardly developing, it seems. The biggest concern right now is her eating. All in all, she isn't eating any more than she did before we started tube feeding. The GI doc and I are at a loss as to how she has gained any ounces at all (she is currently at 17 lbs, 5 ounces, and 20 months old). The GI has concluded, and I now agree, that we have been underestemating the severity of K's reflux all along. This would explain why we can't get her to eat any more and why she has been throwing up blood. Apparently her esophagus is eroding. Yikes. So, here within the next few weeks, she's going to have the full meal deal, a full service and lube, a surgery with several procedures. She'll be getting the nissen fundoplication to prevent her from being able to vomit. At the same time, they'll replace her G-tube with a less conspicuous "button," take out her adenoids (which, apparently, at 95% enlargement, are much of the reason for her endearing snort), replace her ear tubes, a tummy tuck, and a nose job (just kidding about the last two).

Easter

Blissful with Daddy. Always. 

~~~
Mom and Dad have been having a spectacular vacation in Italy. Gone for three weeks, this is quite an adventure for me, as well! I am accustomed to having my mom over for at least a couple of hours nearly every weekday. I tend to feel a little guilty about that, always wondering if I should be able to do all this on my own, yaddah, yaddah. My first full day alone with Keira after they left for vacation was eye opening for me and a kick in the pants. Keira and I spent the whole day out and about. Errands, therapy, a doctors appointment, and a "fiesta" at the boys' school. She seemed to do great...until that night she spiked a fever of 102 and kept throwing up. Jeff and I both agreed that she did not come down with the flu or anything else. Her little system had just had more than it could take that day. With rest, she was fine again within 24 hours and I am newly at peace with the idea that I need help with my kids every day in order to do everything that needs to be done.

I have had plenty of help while Mom and Dad have been gone, but it isn't the same. K doesn't usually eat a lot, as I mentioned before, but she will go 10 hours with a babysitter and eat absolutely nothing. She's a bit more discombobulated, being with different caregivers, even though they are people she knows. She's regressed to some pretty primitive reflexes, going back to being really easily startled, etc. I'll be happy to have Mom and Dad back and so will K!

~~~
A couple of very hopeful things have happened recently. Two days ago, Jeff and I were playing with K on the floor and she crawled. Seriously. Well, not the way you're thinking, but huge for her! On her belly, she bicycled her legs, gripping the floor and eventually working herself across the blanket without the help of her hands. She looked pretty proud of herself, too.

K has been showing more and more signs that she understands language. Today I asked her if she wanted to "eat" and she made what I call her "sphincter face," where she purses her lips, indicating that she doesn't want any more. That was without any bottle or food or anything around! Just the word "eat!" Very exciting.

Therapy was fun today. Both the OT and the PT were there, laughing and joking, and cheering Keira on (and repeatedly mentioning how unfair it was that Sharyn is in Italy---Mom, you might want to think of them when you do your souvenir shopping!) They tried standing her like this for the first time. K surprised us by supporting herself almost entirely on her feet and her upper arms. She kept pushing her head and shoulders up and had this look on her face like she was so proud being such a big, tall girl. I get teary eyed just seeing her upright like this. I suppose because it's so easy to imagine a real little girl (not that she isn't...please know what I mean) toddling around like toddlers do.

~~~
So, we're doing well. Really we are. Life is busy and there are ups and downs, hills and valleys, with K especially, but I think Jeff and I are both in a good place. There is some sadness that comes with Keira's development, or lack thereof, naturally. But both of us, I think, relish in all the richness that she brings to our lives. I've recently (finally) been reading The Still Point in the Turning World by Emily Rapp. She writes about parenting her son who died young of a horrible disease. I can identify with many of her sentiments:

"The goals for our children are simple and terrible and absolutely grounded in the everyday: dignity and minimal discomfort."

"As tragic as the situation appeared from the outside, the inside of our lives was often blissful, despite the daily very real dread about what was happening."

"One of the hardest parts of living with a disability is dealing with other peoples responses to it."

"I was terrified to be alone with him, afraid of the sadness and helplessness, anger and fear tat touching his head would bring on."

"It's as if there's another baby behind this baby. And we'll never get to meet him."

"He lived, I believe, in a perpetual state of being in the now that people tried to achieve on expensive retreats, chanting and doing yoga and tweaking their nutritional habits. Was he, in this way, more evolved? Did he embody a Tay-Sachs version of Nirvana, a kind of existential bliss, or was this an attempt to sprinkle glitter on a pile of shit or gloss over an absurdly tragic situation? Or could it be both?"

"Having no expectations for his development was both oddly liberating and horrific."

However I find myself quite saddened by her writing, too. Sad for her, not me. She seems, at the heart, hopeless. She's unable to take comfort in the care of others, dismissing its efficacy because others can't understand and are afraid of something like it happening to them. She also seems to be on a never-ending, fruitless search for the meaning of her son's life. She seems unable (I haven't completely finished the book yet) to come to a satisfying resting place about why this happened to her, why it happened to him.

I'm thankful for the assurance I have (Divine, I expect, as it doesn't seem to be something that would come naturally to me) that Keira is enough. Her life has worthwhile regardless of whether she reaches any of the measures of achievement that we hold most of our children to. Part of her story, as Rapp would say, is that K needs the freedom to be a person, to be who she is. And that's all. And in that personhood, which could be seen as so much "less than" my other children, she has so much to give.

Those eyes. 

With Liam at the "inclusive" playground

The Age of Equipment

When I last posted, Keira had just had her G-tube placed. She was a very good patient. Was particularly happy with a little morphine that first day.

Her first piercing.

Doctor said the surgery went well. However, during the surgery he noted that her sphincter at the top of her stomach is very "low tone," or loose, which probably explains why Keira doesn't eat more than a couple of ounces at a time. The sphincter doesn't close up tight, like most of ours do, when she's getting full, so she starts to throw up. Yuck.

The G-tube hasn't been the easy answer we had hoped for. The goal was to continue feeding Keira by mouth during the day, then feed her about 15 oz by slow drip through her tube overnight. Unfortunately, it doesn't seem to matter how slow the drip is, K starts to throw up after about 7 ounces most nights.

So, we've been continuing to problem solve this with the doctor. We tried a different formula. We did a barium study, just in case (it looked fine). Currently we're giving her a low dose of antibiotic at mealtimes (which has been shown to help motility). There may be another surgery in order.

All in all, K is pretty happy. In total, her daily food intake is about right where it was when we started the whole tube business a few months back. However, somehow, she was up to 17lbs when we weighed her today! She looks pretty well. Not too scrawny. At just about 19 months, she is the weight of the average 6-9 month old and the height of the average 10 month old. But then again, she's not your average girl.

So K isn't particularly heavy, but it is almost easier for me to carry Ronin, who weighs three times as much. That's because he perches on my hip and holds his body upright. K is getting longer and longer. It's really hard to carry her with one arm now and I often find myself knocking her legs or her head into things unintentionally. Bad mom! Which leads me to...

...the age of equipment. I've decided that this must be a developmental stage for children with disabilities. She isn't meeting the typical milestones, but she has reached a milestone of growth that seems to have invited an onslaught of new equipment!

1. The carseat. Keira was too long for the infant carseat and too floppy headed and underweight for the toddler carseat. I was relieved to actually find a carseat for her at Babies R Us that works great for her. It may have been the most expensive one in the store, but it is far and away cheaper than any carseat that is deemed "special needs" or "adaptive."

2. The wheelchair stroller. Similar issues with her head control and length have led to difficulty using a typical stroller. We got a great deal on this one and it works pretty well. K seems to be tickled to be "sitting up" and has even gone running with me a couple of times.

3. The bean bag. Far lighter than the stroller, I've bought three of these to provide an easy place to situate Keira when she can't be held. One for home. One for the dance studio. One for the church nursery.

4. The swing. Keira needs a lot of input and stimulation to do her best (ironic, really, since she can also get overwhelmed and shut down with too much). So, we've found that a lot of bouncing, vibrating, etc, helps with therapy. So, she's been using therapy swing more often and we've installed one, a hammock, downstairs in the living room.

This is Keira in her own mini ball pit ON TOP of a platform swing in therapy. Ours at home will be a hammock.

5.  The trampoline. Ronin got one for his 6th birthday. However, the OT is so excited to use it with Keira.

6. Prone stander. This is up next. This device will help Keira with head and neck control, and also put weight on her feet to help with overall, strength, growth, and digestion.

Not K. 

7. Theratogs. Also coming soon. These look like a large bandage and are kind of like baby Spanx. She'll wear them under her clothes and hopefully, with a more consistent feeling of upper-body support, she will venture to use her head and neck more.

Not Keira (she's cuter). 

8. Upsee. This, hopefully in the next year or so. This product is just being released this week. Isn't it awesome? Created by a mom in Europe somewhere (which, apparently, is where most of the coolest new innovative special needs equipment comes from). I can't wait!

http://www.fireflyfriends.com/upsee



It's all slightly overwhelming, yes. Especially given that this isn't all. We still have the hand splints, the hip brace, the food pump, and the chest vest. But mostly, it's encouraging to have stuff to try. It's hope.

Keira in the hip brace

 As always, even with all the "stuff," we want to try to be as "normal" as possible. So, here we are on a recent hike:

Enjoying Liam's fiddle lesson:

 Letting Ronin dress her up and pick out her "jewelry":

 Sliding in the park:

I'm hanging in there. The slumps that I have in which I feel too tired and overwhelmed to keep up with everything happen more often than I would like, but overall I think I'm managing okay. I have lots of help and lots of encouragement. One of my favorite bits of encouragement recently was this article: http://parenting.blogs.nytimes.com/2014/03/13/dragon-mother-emily-rapp-a-new-baby-doesnt-and-shouldnt-replace-whats-lost/?action=click&contentCollection Thanks, Andrea. I appreciate the sentiment that I'm not particularly brave or triumphant, but that I love no matter what, and I do what I have to do. A "dragon parent." The thing is, if I'm extraordinarily brave, or whatever, then I'm not normal. And if I'm so special, then that means that if "this" happened to you, I couldn't expect you to muddle through as well as I have. But you could, that's the thing. Few people think they are cut out for this, but when it happens, they rise to the occasion. Your kid is your kid and you love them the best you know how.

As I think about it, I really want two things to happen as a result of sharing my journey with Keira. First, I want you, whoever you are, to feel a little more comfortable with the idea of "special needs." I hope that you'll know a little more about what daily life can look like and how to love someone who doesn't have the same possibilities as you. That way, maybe when you see my daughter, you'll smile and say, "hi." I hope you won't be nervous and avoid us or be afraid of her because she makes snorting noises or crosses her eyes. Second, I want you to feel encouraged. Everybody has their own stuff, their own difficulties that they face and it is all so relative. What one person thinks is a piece of cake may be devastating to another. I know that having a child with severe disabilities is one of those things people fear and believe to be terrible and maybe impossible (because I have/do!). I hope that you look at our lives and see that, even though it's tough, we're getting along okay. And if this can be okay, maybe you can be okay, too.

Just a little surgery

I've not done so well at keeping you updated lately. Keira's progress, to me, has been somewhat tedious and thus seemed wearisome to write about. Tube in, tube out, tube in, cold, ER, tube out, tube in... 

Here are some highlights from the past few weeks:

Keira often cried and was uncomfortable when we did the gravity feeds. She couldn't seem to handle more than about 18 ounces in a day without throwing up. We transitioned to a feeding pump overnight. That is, we fed her what she would take from the bottle during the day and at night, gave her the rest through a slow drip. This worked somewhat better, but K would still throw up if she had more than 10 oz per night. Also, she dropped off her bottle feeding to nearly nothing. My guess is that the NG tube was really uncomfortable and for a kid who already struggles to breath a little because she blocks her airway with her tongue, the NG made the whole suck-swallow-breath  thing nearly impossible. So that's how we've come to the decision to go ahead with the G-tube. She quickly displays more activity and energy when she has more food but this doesn't translate in to her taking more food on her own. And the NG seems to further impair her eating on her own. 

K's got a hip brace. She's to wear it as much as possible indefinitely. This is in the hopes of preventing surgery and maximizing the opportunity for healthy bone growth and perhaps walking. The brace is a bit cumbersome, but not too bad as we can still cuddle pretty well while she's wearing it. She doesn't seem to mind it too much, but is very clear when she wants it OFF! 

K seems to be making more and more intentional sounds, which is pretty fun. It was drawn to my attention recently that Keira is progressing much better in terms of social interaction than in any other domain including cognitive, physical, etc. 

I think that that realization helped me to be a little more observant and give K the benefit if the doubt that some if the sounds and movements she makes are intentional efforts at communication. That very night, we went out to eat with my in-laws. Dave fed her caramel sauce and Janie brought her lime sherbet. Keira made it abundantly clear that she enjoyed both and would raise her arm and/or coo when she wanted more. When she was done, she'd purse her lips or turn her head away. It was a hoot...sort of like your typical baby "firsts." 

We continue to expand our network of families who have kids with disabilities. Though I'm uncomfortable developing relationships based on that lone commonality, it puts me at ease to remember that when Keira is 5, 15, 25 years old, these families will still be in the same boat. We're never in this alone. 

Earlier this week, we purchased Keira's first wheelchair, used, from a family in Boise. It was interesting walking into their home and feeling part of a club. We spoke the same language, all medical terms, doctors names, Medicaid lingo. A couple of weeks back I had a long phone conversation with Janelle, founder and president of Stop CMV. As a result, as a psychologist and CMV parent, I may well be speaking at a CMV policy conference in the fall. 

That brings us to today. K is in surgery, getting her G-tube placed, as I type. She should be out soon and, if all goes well, we'll be home tomorrow. 

Mommy Knows Best

In the past few weeks, I've not been acutely fatigued or depressed or discouraged. I have observed my own tendency, though, to skip my makeup or my socks or even my shower because it was just a little too much effort. So I guess I don't feel exactly peachy, but I'm hanging in there. 

A few things have been brought to my attention lately that have taken some wind from my sails. 

Pregnant friends. I've had several friends become pregnant recently and subsequently consulted me about CMV. (How do I protect myself? Do I need to get tested? What should I ask my doctor?) I'm happy to be a source of information and support. However, I've found it upsetting how little OBs (it wasn't just mine) know about CMV. This frustrated me more than I anticipated, seeing that I was already well aware that physicians are under informed about this. I guess the kicker, though, was that one doctor actually suggested that the friend not see me anymore until after the baby is born since I'm obviously a carrier of CMV. This came too close to home. Now it's personal. It's discriminatory. Most of all, it's incorrect! This person is more likely to contract CMV from her own children than from me. Ugh! 

Tons of appointments. Between this and that, K has had 4-6 appointments per week recently. On top of that, since she's had a cold and whatnot, she's been refusing to be put down for the most part. I'm able to do what I need to do for her, but it's a little knife in my gut every time I tell Ro that I can't play catch right now or Liam that he can't have a friend over today. This is not to mention that work is often slipping in terms of the ranks of priority. It seems that just when I'm feeling energized and caught up, K opens another chapter of more intensive needs. Jeff and I have considered the idea of me stopping work altogether, but I don't know that I'm ready to give that up yet. 

Mommy knows best. We've all heard that phrase before. In recent weeks, the reality of this statement has rung so true. 

However, rather than being empowering, it canotes a feeling of isolation, as if the safety net beneath me has some holes in it. I guess I would like to think that if K is in trouble, I could hand her over to a doctor and he/she would fix it. And though I surely don't have the medical training of a doctor or nurse. I do, however, know how to read my daughter's signals (they all think she's sleeping), and am aware of all of her conditions, in order of what is most concerning, along with her treatments and complicating factors. Her bedroom has it's fair share of medical supplies and equipment and I'm not squeamish about using it. We've spent enough time in doctors offices and hospitals that I think I'm more or less aware of the limits of what can be done. Much of what they do, I can do at home, and I'm much more equipped than your average nurse that walks in, to know how K is doing at first glance. When you're a healthy person, it seems that medicine has an infinite number of options, should you get sick. It's a little disparaging, I suppose, to enter into the place where that just isn't true. I had one experience recently, that really drive home the Ida that Mommy knows best and had me feeling a little let down. Keira had her NG tube in and she got a cold. As it goes, she struggled to breath, so we had an ER visit. Two days later we visited her pediatrician. That afternoon, as Keira was snorting and coughing, I wondered if we should just take the tube out until she was better to help her breath. So I called the GI, who replied, "Absolutely! That's a great idea!" And so, I removed the tube and she had much less obstruction. "Why," I wondered,  "did that have to be my idea? We saw two doctors in the past three days! Why didn't they suggest it?" Put simply, I know best. 

Compulsive coping. I stand here alone with Keira in the recovery room. It's nobody's fault but my own that I'm here by myself. After waiting two days for the GI doc to call, I spoke with him on Wednesday and when he offered a Friday surgery, I snatched up the opportunity. Jeff had a couple of appointments he could not reschedule. I really should have just scheduled it for next week. The G tube is necessary, but not an emergency. I'm seeing that when things are going on that make me feel out of control, I lunge for things I feel like I can do. Generally, this happens in things associated with K...if something can be done, let's do it NOW. The subtext is so I can feel like a good mom. This would explain why last night, I agreed to do a promotional event for the business and was scurrying to pull together items for the Moppett Toggs consignment sale. So not important in the grand scheme of things, but I accomplished something! Sigh. Keeping busy isn't always a bad way to cope, but it is when I'm busy at the expense of more important things. 

K's out of surgery. Sleeping peacefully. We're waiting to go up to her room. Probably be here until Sunday. 

Love to all of you!