The appointment went well. We found out that Gavin’s vitamin D is very low and so we are addressing that. Gavin is also starting on his new twice a day inhaler. They attempted to do the pulmonary testing but Gavin wasn’t able to follow the directions (despite trying very hard) and so they gave up for today.
We didn’t have any scratch testing today which was quite a relief. We decided to keep the infusions at Akron Children’s Hospital instead of doing them at home. He will actually miss his first day of school because it coincides with his next infusion.
As far as the tremors go, they believed to be neurological in nature and not a side effect related to the infusion.
We also got more test results back and I’ll follow up with those later cause I don’t have them infront of me at the moment and I want to be accurate.
Overall, it was a very positive appointment. Thank God for small favors….
– Lost and Tired
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Oh man, pulmonary testing is rough. I had to do it once and nearly couldn't finish.
Gavin doesn\’t seem to have to ability to complete the testing as he is unable to follow the directions. He also struggles with the inhaler itself.
I give Gavin all the credit in the world because he never gives up.