:( My 15-month-old daughter is now scheduled for surgery with Dr. Scott on 2/10. She had a very bad flu right before Christmas, then woke up paralyzed on the left side. (Prior to this was never sick and ahead of schedule in developing.) An MRI showed a stroke and a small older stroke. After several days and lots of tests here in FLA, we sent her films to Dr. Scott who diagnosed moyamoya.  Because of her young age, he will not even do an angiogram, but will go right to surgeries in 2 stages a week apart. We are preparing to spend a month in Boston. Chloe has regained all movement in her left arm, but still cannot walk. She does not appear to have suffered any damage to her intelligence, so we know we are lucky. We are scared and are trying to find a place to stay in Boston. The Ronald McDonald House only takes families of cancer patients, so we may have to pay a small fortune for a hotel. Appreciate any stories of success with young moyamoya patients. Dr. Scott said his prognosis is guarded.

[smiley=wave.gif]Hi Marcia,

I just want to say that you"re in good hands with Dr. Scott and we'll do our part here in keeping your daughter Chloe and all of you in our prayers. Their are great success stories here with children. I'm sure you'll hear from them soon. Sometimes the boards are slow, but they're faithful and wery supportive people.
Please keep us posted .

God bless, Mar

You are in good hands.  Dr. Scott is great.  My daughter had two moyamoya surgeries.  She is having her first soccer game this saturday.  As far as staying up there a month find a hotel that is in a 5 mile radius that is cheaper than the ones right next to the hospital.  The parking garage will cost you $8 a day to park there. Now one parent can stay there with them. My wife slept in the room with my daughter, in a parent room, and in the waiting room.  I even thought of sleeping in my car with a sleeping bag. I would bring along a small TV. Food is expensive too so bring a cooler, and make your sandwhiches for the room.  Just a thought to save you money. I wish you the best.  God bless....

  My daughter had surgery a Boston.She was in for almost 2 weeks(2 seperate surgeries).My husband and I never left the hospital.I stayed in Kathleen's room and he slept in parents rooms,and couches.It was not very comfortable but we just couldn't leave.Even my  sisters stayed in the waiting rooms some nights.didanyone metion to you about the families who live nearby who open their homes to parents of sick children?
 I know you already know this but you are in good hands.Kathleen was in a very unstable condition at the time of her surgeries ,she had had  3 strokes(one the day before her surgery).In spite of this she is doing great and has had no new strokes since her surgeries 2 yrs ago.YOur family will be in our prayers.I hae to tell ou my husband thought about sleeping in the car too if worse came to worse.If I can answer any other questions just let me know.If you want my phone # I could e-mail it also.
Mary Grace