This is the first year that we have been to the hydrocephalus walk, it was at sugarhouse park. It is such a great cause we had to go, plus it is something that will effect Noah and the rest of our family for his entire life.
Jeff and I are pretty frustrated lately....look at the picture below, do you notice Noah's left hand, and his legs. They are so incredibly tight they are almost non functioning. With the baclofin pump he was so much looser and we had so much hope in Noah's future, maybe being able to walk one day....we have been faced recently with the reality of maybe having to get his a wheelchair. I have an apt with Shriner's in November to decide what is best for Noah.
Now notice this picture....it was taken this summer about a week after Noah had the baclofin pump placed. His tone is normal. He can relax (they say it's not all that comfortable to be tight) His left hand and wrist were functioning much better, as well as his legs. We both just kinda feel lost. We dont want to put Noah through anything else. We are talking about maybe trying to put the pump back in next summer, and from now until then, will work on Noah sstrength and him gaining some weight. It is so hard to know there is something out there that can help Noah so much, but were not sure if this was a fluke thing, or if Noah's body isn't compatible with the pump.
Jeff and I are pretty frustrated lately....look at the picture below, do you notice Noah's left hand, and his legs. They are so incredibly tight they are almost non functioning. With the baclofin pump he was so much looser and we had so much hope in Noah's future, maybe being able to walk one day....we have been faced recently with the reality of maybe having to get his a wheelchair. I have an apt with Shriner's in November to decide what is best for Noah.
Now notice this picture....it was taken this summer about a week after Noah had the baclofin pump placed. His tone is normal. He can relax (they say it's not all that comfortable to be tight) His left hand and wrist were functioning much better, as well as his legs. We both just kinda feel lost. We dont want to put Noah through anything else. We are talking about maybe trying to put the pump back in next summer, and from now until then, will work on Noah sstrength and him gaining some weight. It is so hard to know there is something out there that can help Noah so much, but were not sure if this was a fluke thing, or if Noah's body isn't compatible with the pump.
My sweet one of a kind boy!
I had to make something for the scrapbook!
ONE LUCKY MOMMY!!!
1 comment:
ike you guys had a great time =) You got some great pics. You have beautiful family and I am glad to see things are still going alright =)
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