Maddy finally got her AFOs (Ankle Foot Orthosis), they are very small plastic pink and white braces that she wears on her feet and lower legs. She does not have to wear them all the time, just when we are working with her on practicing standing and walking. They help to keep her feet in the proper position and her knees slightly bent instead of locked. Maddy seems to be doing well with them, she likes to bounce when she stands in them. The first time she had them on she kept squating like she was skiing and about to hit a big jump. I can already tell they are going to help.
The moment we waited for over the past few weeks finally arrived. Maddy went to Grand Rounds with all of the local Pediatric Ophthalmologists last week and today we finally heard the results. It is satisfying to know that 3 doctors who are all specialists agree on her treatment and that we are on the right track. However, there have been some concerns over the last few weeks that her right eye, the "good eye" has been fluttering back and forth (nystagmus). The doctors told us that it is not surprising, and what it means is that Maddy's developing her vision and focusing in smaller objects, it is also a sign that the optic nerve in that eye is, after all, smaller than normal. So now we are left wondering if she will have normal vision in either eye. Unfortunately, it isn't a problem that glasses or contacts or surgery can correct and we just have to wait and see how her vision develops.
The doctor also mentioned that some of the areas Maddy is still having difficulty with (picking mommy or daddy out in a crowded room from far away, or focusing on objects not close to her, not mimicing things like clapping or waving), could be signs that her vision is not quite as good as we have originally hoped. But they tell us there is still time for her vision to further develop, so it is not all bad news!
She has needed more stimulation and sensory input lately. We have been experimenting with lots of new ways to help her with this, but I will save those antics for another day, perhaps with pictures?
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