A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Friday, July 19, 2013

And Now For Neurology

Here's Mr. Happy waiting to go see the pediatric neurologist.  He was charmed by Luke.  In fact, so was a passing nurse, who ended up asking questions about adoption.  

Back to the neurologist.  In a nutshell, we chatted, and he passed out a fistful of referrals.  

Looking at July and August, just for Katie and Luke (so, not counting Hannah, who also has 3 appts) we have 15 medical appointments on the calendar.  We also had our first post placement visit with a new social worker.  We're still expecting a joint visit from Alta Regional and SCOE's Infant Development department, which has yet to be scheduled.  And now, we have a sedated MRI, a series of skull x-rays, an electroencephalogram, a visit to the folks who make helmets to decide if they can reshape his head or not, and a referral to ophthalmology.  

Oh, and more blood and urine tests.  Last time we did lab work, it did NOT go well.  They had a hard time hitting a vein, and were unable to get enough blood out of him to complete all the tests ordered the first time.  This should be interesting.  

One of the things he's being tested for is Fragile X.  On the one hand, I want to know what we're dealing with.  On the other, some of the potential labels we're looking at are pretty scary.  The neurologist said that Luke was displaying some autistic behaviors, but that an official diagnosis would have to wait.  

Fortunately, it's Friday, so that's it for appointments this week.  Next week, we have a reprieve on Monday, as it's Luke's BIRTHDAY, and we're having a little get together.  (And then it's back to the grindstone with 5 appointments and Hannah's Back To School night in the rest of the week.)  

One "test" the neurologist did was very informative.  He picked Luke up and "flew" him a little bit.  Then he said, "Babies learn to put their arms out to catch themselves at 9 months."  And proceeded to let Luke almost face plant into the exam table.  No attempt whatsoever to put his hands out on the way down.  We looked at each other and went, "Hmm."  The social worker that did our post placement visit yesterday kept saying we should think of him as a 4 month old.  So we're having to adjust our expectations a bit.  

Really looking forward to what the MIND Institute people have to say next week.  Hoping for some answers and some practical ways to help him progress.  

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  1. he is so stinking cute. I wish you lots of luck next week with all those appts.

  2. He is so adorable!! Wow, now I feel not so bad about having 12 appts in 1 week last week :) Praying for answers and the peace to get through whatever the diagnosis is.