Tuesday, May 24, 2011


Andrew has proven to the government that he does not have tuberculosis. He is caught up on his government-mandated-suggested vaccinations. Thus he is not a public-health nuisance and will be allowed to start his CNA class next month.

Maggie saw a new osteopath yesterday. (The one we like very much is no longer covered by insurance.) Going to new D.O.'s and new chiropractors is hard: they ask me what needs to be done. I want to holler, "You're the doctor. You're the one with the training. Just make this person's back straight." There must be a lot of different ways to accomplish that -- and at different speeds. Maggie's visit yesterday took a lot longer than expected. I always forget that new doctors need a health history (whether it's relevant to why we're seeing them or not), and Maggie's health history isn't speedy to record. Good news: her x-rays yesterday for the scoliosis (first ones in five years) still showed only a mild curvature.

Maggie saw an immunologist today. It seemed like most of the long visit was filling in the nurse-practitioner on previous test results, surgeries, Mag's manifestations of vcfs, and this winter's illness. I don't know how many vials of blood they drew for the labwork, but the nurse told Maggie that --no matter what it looked like-- they weren't taking ALL her blood today. They will be looking at T-cell and B-cell counts and function, thyroid levels, endocrine levels, calcium levels, and checking to see if this winter's low platelet count has changed. They checked Maggie for asthma too; she seems to show a not-too-serious problem in her left lung where she had the post-surgery collapse and where the doctor thought she might be developing pneumonia this winter. Before helping Maggie figure out what she might do for a living or what kind of training she might need for a job, we figured we needed to find out about her immune system and how it will affect her health and strength and ability to hold down a job ... and whether working with kids or in a school would be too risky for her health.

The immunologist today told us that Maggie's facial features for 22.q.11-deletion are fairly mild. She also gave me a little speech about how we should call it 22.q.11-deletion syndrome instead of VCFS. Hmmm ... can you say "12 syllables versus 4 syllables"??? Yesterday I had to instruct the doctor on what VCFS is, and today I had to instruct the nurse practitioner on what homeschooling is and where we get our diploma and how this affects the services the State/school offers to special-ed students. (Rumor has it that some people go to the doctor and don't have to teach the doctors things. Wouldn't that be weird?)

We have a dentist visit in two weeks. He will give us the prescription for the oral surgery to have Maggie's wisdom teeth removed.

Nathan's doctor visit today confirmed what's been causing his knee problems/pain for many years. The tear in his knee can be repaired. So that's good news too.

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