Friday, May 17, 2013

February Eliah Update

Saturday, February 27, 2010




Eliah seems to be progressing at rapid rate. Although our milestones are small, there are many. Eliah is working very hard to catch up physically, and his frustrations tell me that he is eager to do new things.
One thing I constantly have to remind myself, is that Eliah is so much smarter than he outwardly shows. He knows colors and shapes, and knows music so well that he gets mad if I sing the wrong words. He craves to learn. We read at least 10 books a day to him, and he just can't seem to get enough. I keep a running dialog going with him at all times (and yes, I look ridiculous in public). But he loves it,and has himself become more vocal. He is not saying words, but he is trying so hard to get his points across verbally (lots of different kinds of screaming).
Eliah has learned one sign, "more", and uses it quite often. As well, he is learning how to use talk boxes to interact with us. We record a statement like, "Eliah wants juice" on the talk box, and he is able to press the button to say what he wants. Here is a video of Eliah using a talk box to sing a song with this therapists.





Also, Eliah received his wheelchair in January, and he is a boy on a mission. We ALL love that eating out and shopping have become easier. Eliah loves that he gets to sit at the table with us like big boy.
Since he has gotten the wheelchair, he has been able to feed himself (some), and he has just learned to drink from a straw. Here is a video of Eliah feeding himself a Popsicle (this was the first time he has fed himself)


Eliah is trying, with great effort, to go places. He's learning how to operate his wheelchair; some days are better than others. Here is a video of Eliah at Physical Therapy yesterday, trying, with great frustration, to get his wheelchair to go.


He is also rolling on his side, around the room, to get places and to get to the toys he wants. He has found a way to get "some" forward motion, like an army crawl, as well. I know he feels such accomplishment when he successfully gets where he is going. The only setback thus far has been his stander. He loves to stand in it, but after only twenty minutes, his feet develop a blood spot on each heel.
With Hemophilia, he is more likely to bleed in spontaneous ways, and although we don't know the cause, his heels bleed every single time he is in the stander (even right after his shot of clotting factor). We are going to try new ways to work around this setback, as it takes two weeks for the bruising to go away, and he will never learn to walk or stand with so little time in the stander. But we are confident that we will find a way. And I know Eliah is determined enough to make it happen one way or another.
Ultimately, Eliah seems to be so much happier in general. We spend a lot of time laughing, playing and learning. Considering what we have been given, we are making the absolute best of it. I couldn't be prouder of my little fighter.

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