8/18/09
8/5/09
Assessment Time
Its been a long couple of weeks here in Grunsted land. We've been going through Bobby's 1 year assessments (delayed because of all of his surgeries). The results have been disheartening. His Physical Therapy assessment showed him at the same age equivalency as his 6 month assessment. He came out as 4-5 months. To some extent, we just flat our reject that score. He is much, much stronger than he was 6 months ago and his general health and fitness aren't even comparable to winter time. But he has yet to achieve any of the major milestones - he can't roll over tummy to back by himself, he can't sit, he can't crawl, he can't walk. Etc.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
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