She Makes Me Special

Dare I say it’s fun sometimes to visit with Keira’s specialists and other doctors. It’s like a game; a puzzle we’re solving and working on together to come up with ideas. I get taken seriously and I also get to pick the minds of these people and gain a better understanding of their expertise. But of course the very minute that I think that that’s fun, I’m feeling guilty because I’m on what I neurotically think is a slippery slope to Munchhausen’s by Proxy (a psychological syndrome in which the parent fakes medical problems in his/her child in order to gain attention).

Let me catch you up on the last couple of weeks. Keira got a cold and one night we took her to the emergency room. Even the boys, I think, were expecting her to get admitted to the hospital. She was having some trouble breathing, but we were sent home after her oxygen saturations seemed to be good, her RSV swab was negative, and her x-ray showed no pneumonia. Wahoo! Who knew a trip to the ER could be so great? Great because 1) we knew the drill and weren’t too worried and 2) she got to come straight home!! It occurred to us that this breathing concern could happen every time Keira gets a cold, which could have us making a lot of ER visits in the future. To help with that, we’ve purchased a mini pulse oximiter for use at home.

As a side note, I have to tell you about the strangest contraption we discovered at the ER. In order to keep Keira upright and still during her chest x-ray, they put her in a Pigg-o-stat. The funniest invention. It looked like a cow shoot or some sort of torture device. K sat on a miniature bicycle seat and two translucent half cylanders were put around her in order to hold her arms up by her head. It was kind of funny and kind of sad at the same time, but she only had to be in it for about 20 seconds because they got a good pic on the first try!

This is not Keira. I wasn't that heartless. 

We’ve been to see the GI. Good news. He doesn’t think she needs a G-tube. Not now, anyway. Two of the major calorie-zappers in typical 13- month-olds are 1) brain usage and growth and 2) usage of major muscle groups (a.k.a. learning to walk). Since K is not very efficient at either, her body seems to be adapting to what it actually needs at this point. Just to be safe, he sent us for a swallow-study and we’ll be headed to an endocrinologist. The swallow study was to make sure that she isn’t “silently aspirating” her food. We did that procedure last week and results show that her food ends up exactly where it’s supposed to.

The endocrinologist will make sure that there’s no pituitary issue that is keeping her from growing taller. In discussing this possibility with the GI, he was sympathetic to the idea that even if we could induce more height growth in K, we might not want to as, in reality, we may be having to carry her around and maneuvering her for a very long time. Such a strange discussion to have. It reminded me, actually, of a story I heard about a family who had a profoundly disabled daughter. I don’t know how I feel about the title, but they called her a “pillow angel,” because realistically, all she could do was lie on the couch and look pretty. She lived a long time and the parents opted to have a hysterectomy performed on their daughter. This prevented her from having breasts, periods, or the risk of getting pregnant if, God forbid, she was ever taken advantage of. The surgery made her care easier, but sparked a huge controversy in the medical community. As a result, surgeries of this manner are now outlawed in several states. I understand the ethical concerns here, but I also think that what's best for the child sometimes comes down to what's best for helping the parents cope. Food for thought.

We’ve asked around and made some decisions about positioning devices as well. We were advised by one trusted therapist to wait on wheelchairs until we cannot feasibly move Keira around all the time anymore, which may be years from now. She said that once people get put in wheelchairs, they start to look like their wheelchairs because that is the only place they ever sit. Even in bed, sleeping, their bodies are shaped like they are in the chair. For now, she has the floor, the couch, her car seat, a bouncy seat, her beanbag chair, etc. For now, the overpriced "tumble form" can suck it. In a third attempt to keep Keira from always looking to her extreme right, my mom has sewn a mini U-shaped pillow, like the kind you buy at the airport. I think it’s helping and at least it makes me feel better about sitting her in some chairs that aren’t suited just right for her.

And her eyes. Since Keira got over her last cold, she seems to be in a place of real growth. She’s super “organized,” which, as far as her vision is concerned, means that we catch her looking to her left. We’ve seen her sucking on her left hand, and she looks at us more often with both eyes together. Jeff even caught her looking up at the ceiling fan the other day, which is much further away than she typically tends to focus. We are optimistic that as these periods of organization get longer and longer, her vision, and maybe other stuff too, will become more and more functional.