Tuesday, January 22, 2013

Doctor update

The multitude of doctor appointments has finally dissipated. While we still have doctor appointments to look forward to, the constant state of in and out of office visits has slowed to a trickle. We don't have it all figured out yet, but we have had some pretty good information sent our way. So after months of having nothing but "wait and see", we are getting a few pieces to the puzzle. 

Cardiology is pleased with Johnny. He is gaining weight, he is responsive, and he is not lethargic. His x-rays looked good with lungs looking relatively equal. The cardiologist could hear the holes in his heart better which he says is a great sign because as they get smaller, they sound more and more like a whistling sound. Our cardiologist takes all this information together and says let's leave him alone for awhile. There isn't any point in messing with something that could fix itself so we will go back in the spring for an echo. This is all fantastic news. In July we thought we would be scheduling surgery at this point!

Johnny's Occupational therapy has brought positive news as well. Today was Johnny's second meeting with his therapist and he is developing normally thus far. He has lowish muscle tone, but he is still strong and fights hard to keep his head up. She was really impressed with his abilities and how much he is already achieving. She was also really impressed with how vocal he can be, making sounds and observing the world around him. I have some great tips on things to work with him on and am happy we have extra people watching out for our boy.

A huge fog has been lifted today as Johnny went to the audiologist. I cannot tell you how big of a relief it was to glimpse over at the computer screen and see "PASS" written as they tested his left ear. I could have cried then and there...I felt immensely blessed with hearing in one ear. Then the audiologist tested the right ear which also got a big ole "PASS". It was such a relief to know that he has hearing and as far as they can tell will not have that issue to deal with. We will have to go back in 6 weeks to look at his ears again because he has some congestion and fluid build up around his right ear drum and they don't want that to be a problem, but for now everything looks great.

I am so proud of the trooper this little guy has been throughout it all. I can't tell you how many scales he has peed on and how many arms he has cried in, but it has been worth it to see that his every need is taken care of.

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