Alex will be going up to D.C. 4th Sept for his final checkup, I'm just
amazed at this drug and what normal lives are children are now having. We
can even go on vacation which has never been an option before. We are down
to 4.5mg of steroid daily and Alex is making his own cortisone. He is also
doing all his injections (anakinra x1 and heparin x2 daily) himself which is
great though we are still drawing them up as numbers and Alex don't mix.All
labs are normal and he is managing to store and make Iron. We have also
managed to come off many of his drugs including his nurse who came in twice
a week to do infusions.

Love to you all and a wonderful 4th July.

Katexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx