A little history on RJ. At five weeks old (and all of 5 lbs), he had his g-tube put in. At the time we didn't have a diagnosis. The doctors told us that if he got a g-tube we could take him home. No brainer. I really had no expectation that seven years later we would still have it. It hasn't been for lack of trying. We have tried every cup and bottle on the market. An infant we had his tongue and upper lip clipped. No improvement. He actually eats solid food well. Drinking is another story. He really has no interest in swallowing liquids. At the end of October I took him in for a swallow study. I was hoping they would say it's some easy magic fix. No dice. Even more confusing, there is NOTHING keeping him from drinking physically and he has a documented safe and very organized swallow.
He had his 7 year well check and some tough questions prompted his pediatrician to suggest us trying to go without the g-tube for a week. No Pediasure, no water, no nothing. I have the sippy cups above (which he has been the most successful at) at his disposal at all times. Guess what? He's DRINKING. Not gallons a day but we're seeing improvement. His diapers are wet, he's making tears all which his doctor said is what is needed to continue. Keep your fingers crossed that this is what it takes for things to click with him!
He had his 7 year well check and some tough questions prompted his pediatrician to suggest us trying to go without the g-tube for a week. No Pediasure, no water, no nothing. I have the sippy cups above (which he has been the most successful at) at his disposal at all times. Guess what? He's DRINKING. Not gallons a day but we're seeing improvement. His diapers are wet, he's making tears all which his doctor said is what is needed to continue. Keep your fingers crossed that this is what it takes for things to click with him!
4 comments:
Good deal, go Ryan :) Keep us posted.
I am keeping my fingers crossed that this is the answer but am still concerned wanting to make sure he gets what he needs. I know you are keeping a very close eye on him and really hope this just the beginning of great things for him.
Wow! Very exciting! Drink up Ryan!
I found you on a search for 15q11.2 del, and what came up was that RJ was/is on growth hormone. They are talking about starting my son on GH, but it has never really been linked to his deletion (as his is a microdeletion at 15q11.2) and not PWS. However, I had never really read about PWS needing GH. Is it common? Do you know of any other kids with a microdeletion similar to my son's? (It is difficult finding anything...)
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