Friday, September 30, 2005

Interesting week

Maria had a couple of interesting visits this week.

Tuesday she saw her pediatrician for routine immunizations. She still thinks Maria needs ankle braces since she tends to point her toes rather than keeping her ankles bent. Her therapists think it's way to early for that and that once she starts walking her feet will be fine, and we're inclined to agree. On the growth chart, she's showing at the 50th percentile for weight, the 10th for length, and the 3rd for head circumference. It's actually pretty funny that a hydrocephalus baby has a small head. She's not concerned as long as Maria doesn't drop off the chart, though she wants to see her back in two months to be sure.

She had her newborn evaluation on Thursday. As I understand it, this is some program where they follow premature infants from the NICU to see how the develop. Interesting to note that this therapist measured her and showed a couple of tricks to get her true length, since she tends to bend her knees. She got a couple of inches longer than the pediatrician's nurse did, which puts her at the 75th percentile! Quite a difference for a fairly small measurement error.

Anyhow, she was very happy with how much Maria has progressed in the six months since she's seen her. However, she roughly estimated Maria's gross motor skills in the 13-20 week range. Now that's kind of depressing for a fifteen-month-old. But the last time she was evaluated (six months ago) she wasn't even measurable. And that progress has almost all been made in the last couple of months, so although she's behind she's gaining quickly.

Another issue that has come up from a couple of the therapists is to start Maria in a stander. This is a piece of equipment that holds her in a standing position so that she gets used to putting weight on her legs with the ultimate goal that she will be able to stand and walk unassisted. Sounds great...until you get a look at them. One type looks like a tiny little coffin, and the other...well, you remember that scene from "Silence of the Lambs" where they wheel out Hannible Lecter all bound up? It looks kind of like that, but without the face mask. Then again, with all those teeth she's got, maybe we should ask for the face mask too :) The vision therapist says they have some in storage at the School for the Blind so Cathy can try it out for a while and she can see if it helps before shelling out anywhere from $800-$2000 for one.

Oh, the pediatrician also made an interesting comment about the hearing aids. We've long felt that they do now good. The problem is that the pediatrician thinks that no one is ever going to tell us to stop using them. It's sort of like the feeding tube; everyone was quick to tell us to shove it in, but no one wanted the responsibility of making the decision to take it out. We're trying to be open minded about the hearing aids, and we really try and keep them in her tiny little ears, but they obviously don't help. But if Cathy goes to the otoneurologist (ear doctor) about it, he's just going to say we should turn them up. Since her hearing has been noticeably improving over the last few months, I suspect at some point we'll just give up and stop using them.

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