Friday, August 21, 2015

3 doc visits this week and all good

Just saw dr gill. She said she worked in a different part of the toungue which she has been working on with infants. She said it could help with articulation. Also said she worked on his gut where he has a kind of shelf area. Forgot what she said that might help with. 

Yesterday doctor Borchert, CHLA Neuro Opthamologist, said his eyes look good as long as we always keep his glasses on. The new prescription without the bifocals seems to be doing the job. As I always am so confused how they work for him I asked again for clarification. And the basic idea is that his eyes see fine without the glasses but they don't work together. We are continuing to train his brain to make them work together. He said we are right on track with progress. Just to keep his glasses on all waking hours. 

And finally Dr. Lazareff, the UCLA, neurosurgeon who placed his shunt at 4 months old. When we saw him on Tuesday he was very happy to share that the tubing, that another doc was worried was too short to last much longer, is actually plenty long and Dr. L feels can last the rest of his life. He explained that the torso does not grow much relative to the legs from the age of 5 and older. And he said if it ever did need to be revised that he would come out of retirement to do it for him! And his nurse was there to witness this offer ;)

He was 95% sure it was fine. But the X-rays which were done in the ER didn't show the end of the tubing. To give him that extra 5% of certainty we had another X-ray done on his lower abdomen. Which ended up being probably the worst X-ray he's had. For some reason he was not having it and I spent a good 20-30 minutes trying to get him to lay down for it. We ended up having to have me and 2 others gold him down for the 30 second X-ray. So frustrating and unnecessary. There have been so many other more serious things that have required such force and I was so sad to waste such an unnerving experience on a simple X-ray. 

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