Thursday, February 24, 2011

Our 2nd Outpatient Clinic...

...appointment has come and gone and all is well. John is doing great, he looks amazing and the doctors and nurses are just aglow with joy when they look at him. Some minor med tweaking, his liver numbers are now good enough it wasn't even brought up and his kidneys are hanging in there and improving with each passing week. He looks amazing, like better than ever before and we are looking forward to getting to go home in a few weeks so long as no unforseen things come up. We are finally starting to get a little bit more sleep, John is now awake a time or two in the night instead of every couple hours and during the day he is less anxious and more settled even though he still has a very pronounced startle reflex. We have found out from an OT here that John's tongue is just locked up, he has never had side to side motion or the ability to elevate it to his upper teeth or lip and no amount of therapy is going to fix that. In the long run this means that he isn't going to talk and will likely never be able to eat enough calories to sustain him without some form of g-tube feeds or high calorie drinks, but it means nothing about how smart, amazing and wonderful he is and is like his weak legs only a physical issue to work around, not a thing to stop him from doing all kinds of amazing things with his life.

Mark is on his way here through snowy roads and weather so that I can attend a conference on augmentative communication devices tomorrow. We are glad of every moment that we get to have together and slowly are being able to relax a bit and enjoy them more. This has been a long amazing road full of miracles and fear and friendship and one that we will not soon be off of but am glad to have had so many prayers and so much support.

1 comment:

Anonymous said...

Praise be to God that John has made it through this difficult time and that he has parents who love him so deeply.
Kent & Janie