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.