Tuesday, November 1, 2016

Nov. 1st, 2016

I can't believe it has been an entire year  since I wrote on our blog!

Life changes, and things shift.  Finally.

Lots of bumps to get here, but we are here.  Bumps:   Liver complications.  Nodular Regenative Hyperplasia.   We handled it.  

An amazing visit to the National Institute of Health in Washington D.C.  Full work up with great news.  We were told Gary has received great care thus far from Seattle Childrens Hospital.  Over half of the calcium is gone.    We concluded with his psychiatrist because he has just made vast improvements with his anxiety because is health is doing better.

Currently  Gary still gets his infusions every two weeks.   He is very stable.   Next month we hope to start to taper steroids!!!   It will be the true test.

Last week we had a meeting about Stem cell transplant.   Very interesting.  Not on the menu though.

Gary is attending school everyday and he really loves it.

He had a "over do it" sort of situation with Halloween.  So much so that I got an email from his teacher saying he was worried about him because his legs and feet hurt.   He hobbled around all day.  I explained it is probably similar to the way a person shops till they drop.   Well he trick or treated till he dropped.    It's all for the candy.