Chris has had a sinus problem for the last 8 days-he has allergys all the time- but this was a lot diffrent.
i took him to his pedeatrition who wasn`t to concerned -drink lots of fluid ,rest . Chris already drinks LOTS of liquid anyway, but this am he started complaining of pain at his graft site and neck pain .
I live so far from Stanford I called and coundn`t get thru at 7am so i took Chris to the local ER.
Well it turned out that he was dehydrated from this virus or allergys -But the Dr. had never heard of Moya Moya ! They had to go look it up. They gave him IV fluids and he almost immedialtlly felt so much better.
I know I am rambling but there is a point here- I made sure my local ER has Dr. Steinbergs number and that they know what moya moya is and it is attached to his record.
Jolie called me back and was soooooo helpful . Just the support from her was fabulous.
This is the first time he has been sick since his surgury and it was scary for him and me.

I gad to go to the ER sunday because i started having symptoms for the first time since my surgery a year ago. We figured out that i was probably dehydrated too! I talked with Jolie too and agree how nice and helpful she was. Since summer is now here i think we all have to remeber to keep hydrated cause i know this heat in Atlanta is bad right now! Hope Chris is feeling better!

Christy

Chris is feeling better . tho i am keeping him home thru the weekend.
  I am so glad this is here for all of us to share our experinces with each other . it has made a big diffrence for me to be able to talk about what is happening and to read what is going on with people who have to do this.
thanks to all of you!!!!