The Daughter Chronicles

Tuesday, August 01, 2006

The triumph and frustration of mobility

First, the good news. Norah is standing freely pretty well these days. She can stand without support for a good ten to fifteen seconds, and is doing it a lot more often. She hasn't figured out how to get up into a standing position yet, so she simply lets go to whatever she is holding onto at the time. We bought her a walker toy to facilitate walking, and she was just holding onto it and letting go and sitting down when it rolled forward. Last week I put her behind it and she took off across the room without hesitating. It was unexpected but quite cool. I keep trying to take a picture of her doing it but the camera is far too fascinating for her, and whenever she sees it she starts crawling toward it. Oh well - I'll keep trying!

Then a few days ago she took a few steps on her own. Since then she has done it a few more times. She can only take about three before she loses her balance, but she's very excited about it and I doubt if it will be long before she's walking more. Tonight she was standing without support for almost twenty seconds without swaying at all, so her balance is getting better every day. We're very excited about it and we hope this helps Demon Child #1, because her news is not as good.

Today Mia had physical therapy, and her PT suggested that perhaps he shouldn't work with her anymore. He was serious, too. Mia is making good progress with her communication skills and even with her fine motor skills, but she has reached an impasse with walking. She has been wearing her AFO and using her gait trainer, but she has figured out how to walk in the gait trainer and go straight without pushing off on her left leg or even using it that much. Obviously this is not the way she needs to learn, and her PT has been trying to get her to bend her knee and move her foot forward and then push off. She has reached a point where she bursts into tears whenever he walks through the door and whenever he tries to make her work. If he leaves her alone for more than a minute, she immediately calms down, but the instant he begins again, the screaming resumes. I've been trying to get her to walk in her gait trainer while he's not around, but whenever I try the smallest thing to make her walk correctly, she freaks out too. We were discussing it today and he said there's really nothing more he can do because she has to master this before he can move on. It's not really anything more than stubbornness at this point, because she knows how to do it and it appears easier than the things she does to resist it. I have watched her move her right foot and brace her left heel on the ground and push forward with her right foot over and over. It looks very hard. Then, occasionally, she'll actually bend her left knee, bring her foot forward far enough to make a difference, and push off on her left foot, and it looks very easy and fluid. Then she immediately goes back to her old way. So I doubt very much if she is resisting because she doesn't know what to do. I don't exactly know why she's doing it.

Her PT is going on vacation for a few weeks, and he suggested some things we could do. He has said many times that it's a question of motivation with Mia, and I have no idea what will motivate her. He said we should clear out a large space in the house by moving some of the furniture and putting her, in her gait trainer, in the center of it, alone. We should place some toys on a table far away from her and simply leave her there. He also suggested putting her in the gait trainer first thing in the morning and trying to motivate her with food, because that's probably when she's most hungry. We're going to try both things, and I really hope something gets through to her, because she can't make any progress unless she gets past this.

We've been having a similar problem with her eating, even though she does fine throughout the day. We decided that both kids are going to start eating what we eat for dinner, and Norah has been relatively fine with it, but Mia is resisting every day. She gets bored with the food she likes but refuses to try new things. I am going to take her to the doctor so he can weigh and measure her to make sure her body index is okay, and then we're going to give her what she gets for dinner and nothing else. If she goes to bed hungry that's her problem. It's strange, because we'll put stuff in her mouth - like a Mandarin orange - and she'll just leave it there. She won't swallow it but she won't spit it out either. It just sits in her mouth for long minutes, and then, usually, she'll finally swallow it. And it doesn't kill her! Fancy that. But we can't go through dinner like that! So I'm hoping that the doctor says she's fine, because I have a feeling she won't be eating dinner for many months to come. Again, she's being stubborn and we have no idea how to motivate her. We know her taste buds were messed up a bit, but when she refuses to even try new things, it's hard to give her something she likes.

I'm not sure why she has become so bad in the gait trainer. I'm hoping that going back to school in a couple of weeks will help, because she'll be around a lot of kids who are completely mobile again. We also plan to make an exaggerated big deal about Norah walking in the hopes that Mia will get jealous. Ah, so manipulative are parents! I doubt it will work, but we have to try something.

So it's been a bittersweet week here, as one kid makes huge progress and the other resists it. On Thursday Mia is getting botox injections (more on that after the fact), so maybe that will help. We'll see.


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