Addison's follow-up Neurology appointment

First if this sounds just off - please forgive me, the stomach flu I think hit me hard last night and I still am feeling terrible (too bad Mike is leaving for work soon - let's hope the house isn't too awful when he gets home).  I went to her appointment and tried terribly hard not to touch anything.  Thank goodness Mike went with us, have I mentioned how great he is at taking care of things? 
We have a little more understanding of what is going on with Addison, but not quite as clear as we were hoping for.  She's a bit of a mystery - she has symptoms and things that fit together and suggest some syndromes, but then other syndromes that aren't related at all to them.  It seems essentially she has symptoms from various syndromes and it's not completely clear what she "has."  But there was lots of good news today, so we'll start with the good news.

Good Things We Learned Today

• The MRI & CT scans showed no signs of calcification.  This rules out 90% of congential infections (something that I had while pregnant that I passed on to her).  Congential infection is the leading cause of congentail hearing loss the neurologist said.  
• Chromosome testing showed that she is a normal female; there were no major problems with her genes.  This rules out some syndromes that we would have seen; but it doesn't mean that there may be additional more specific testing that they'd do in the future.
• Her blood test/liver test were all normal and looked great.
• Her EEG was completely normal.  The doctor said this and he said it with great relief!  

The Other Things We Learned Today (I'm not sure they are bad...I'm having a hard time saying they are bad things we learned, just not normal)

• The MRI & CT showed atrophy of her brain; the entire brain.  Her soft spots are all closed, but they did not close early; rather her brain stopped growing and then her soft spots closed.  
• She likely has recessive microcephaly and there are things that we'll have to watch for as she grows.  We are to be especially watchful of any signs of diabates.  If she develops diabetes we will need to test for a mitochondrial disorder, which did not sound good but I'm not googling it right now to find out more specifics, it's not something the doctor shared details of and I'm guessing for a reason.  We are also to watch for seizures, which can be common with children with microcephaly.
• Addison is also likely to have ADHD and need medication at some point in  her life.  We will see about this; poor girl they say it's a genetic thing anyway and I am sure if you asked my mom she'd love to tell you stories about how I struggled with it early on (well really the family struggled with my ADHD cause I'm sure it wasn't easy on anyone.)

Addison will follow up with the neurologist in 6 months unless there are changes to her health.  He also strongly recommended that we have the  information we learned from all these tests etc. with her geneticist in San Diego and follow up with her to get her opinion and thoughts on all these things.  We both meant to ask if Addison's head will ever grow, but neither of us remembered.  I gott the impression that her head may grow slightly but probably not much.  The other really good news/other news is that we don't know how a shrunken brain is going to affect Addison's intelligence.  She is doing great right now, she communicates her desires and wants and is learning.  We are hopefully that she'll have a small but very powerful brain.  I'm sure there are odds out there about what percentage of children with microcephaly have normal intelligence - but they don't matter she's not a percentage or number and God is the one who has a plan and whatever it is we're so glad to be along for the journey with her.  We'll see the endocrinologist tomorrow and may have more pieces to the puzzle, but maybe not.
My friend Kristin shared a verse with me on Facebook - one that I wanted to post last night but just couldn't remember where it was (definitely on my list of things to work on, Bible memorization!) So I'm going to close with it:

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." – James 1:17