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.