Jun 1, 2008

She stands.



Things have been super busy around here lately so I'm catching up on some blog posts.

OK, ok. So I just want to point out that pictures (and words) can be deceiving. Yes it looks like she's really standing. But it was only for a few seconds and she really didn't like it and couldn't sustain it. Still we're proud of this accomplishment but I don't want everyone to get all excited and say to us"Oh I saw she's standing now." It's a long road between supporting your weight for a few seconds with support and true standing. Believe me when the day comes that she's standing for real everyone will know. I may have it written in the sky.

I had someone recently ask me if she could talk?! It can be painful when people ask you if your child is meeting developmental milestones that they are nowhere close to meeting and may never meet. It took me awhile to figure out why she thought that and later I realized that I'd posted on the blog that she was "talking" with her PMV. Easy enough to misunderstand I suppose. So I thought I'd clarify. Sometimes when she's wearing her PMV she will try to imitate voice sounds. So there is fluctuation in the sound. She is very very far from ever talking. For one she can't make sound without the PMV. And she can't wear the PMV for much time and only with one-on-one supervision. In April, in Cincinnati, the docs questioned whether she should really even have a PMV. Because it's very difficult to force air through a swollen airway to exhale let alone make sound. She first needs to be able to regularly spend more time making sounds, practice making those sounds, learn control over her "voice", eventually learn how to imitate specific sounds like consonants and vowels, then learn how to put those together and understand the association between the word and its meaning. It seems simple to us but its a highly complex set of skills that is likely to take her years due to her medical conditions.

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