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Monday, February 10, 2014

A Busy Week


A really long week is finally over but this week also has several things to do, none of which are as long as everything was last week.

The first thing on the agenda last week was taking John to see his pediatrician to discuss what to do about his vitamin D deficiency.  He asked us to retest to make sure the labs return the same and also to determine the underlying cause of the deficiency.  There are many mechanisms in the body that produce vitamin D so some of the blood work will be to see if something else isn’t working quite right.  So that is what we are off to do today, take more blood.  John did pretty well getting his blood drawn.  We watched a social story online so that he would be prepared and it pretty much worked
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The next day was John’s REED (Review of Existing Evaluation Data) to determine any new evaluations were needed.  Pretty much they are only going to re-evaluate for language.  For everything else, we know how he is doing.  Some things are good, some things not so good, behavior in particular.  Of course, everyone loves him and praises him.  They said even when he is angry he is cute.  As a mom, I agree.  He is my Johnny Angel.

Friday was the Texas Children’s doctor appointments for Daniel.  As I already wrote, the tumor did not grow enough to see over the last 6 months so our next MRI will be at the beginning of August. Once the tumor starts causing symptoms, surgery will be needed along with 4 ½ weeks of proton radiation therapy . We’ve been watching for the headache and vomiting without a fever so long that it seems normal but this time they gave us a few symptoms to watch in case he develops enema (brain swelling).  Basically, it is to watch for the really small seizures, not the big ones where you shake but the tiny ones that hard to detect.  We are supposed to look for: staring off into space, not responding to his name being called, stopping in the middle of a sentence, and lack of attention.  Things like that.  Yeah, that’s not going to work. I was kind of laughing to myself because Daniel already does all of that because of his Autism and language issues.  It is kind of sad and a little worrisome, but oh, well, that is our life.  I suppose if it gets bad enough we’ll start to notice.
Daniel waiting at the Oncology and Hematology Department at Texas Children's Hospital.

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