WE now have an appointment with Dr Stoodley but it isnt til the 13th of October  .  Then I am guessing he will book in more testing and then surgery.  So I am guessing that surgery wont be til the New Year with the way the Australian system works  .
Brielle has had 2 strokes that we missed  and then a bigger one where she lost function of speech and movement of her left leg (which she is re-gaining). 
I understand that MM is progressive so waiting all this time is making me feel sick  .
Can anyone give me information on the timing of surgery and when its ideal.  I want something to give to my pead when I call him on Monday morning so he can ring and push the appointment forward (if at all possible).
Thanks

  I think your wise to give your doc as much information as possible.I don't want to add to your stress on this but I can tell you our experience and maybe it will help you doc to understand the seriousness of this and expedite the appts.
   Kathleen was diagnosed in Jan 02.We brought her to the ER and found out she ahd suffered a stroke we also were told she had 2 previouse strokes we hadn't noticed.
At the end of Feb 02 she had testing at Boston Children's Hospital and was scheduled for surgery in June(this of course freaked us out to think of waiting soooo long).We knew she was like a ticking bomb.
she then had another stroke early March of 02,(she woke up and couldn't use her right arm)this prompted them to move her surgery up to mid April.She had another stroke the day before surgery in the car on the way to BCH.It was decided that we would move forward with surgery,even though it's not comon practice to do surgery so close to a stroke episode, she was getting very unstable and  the strokes were getting more severe and closer together.She had surgery the next day....They were unable to do both sides because she became very unstable durring the surgery.Four days later she suffered strokes on both sides a very devestating one that left her with no use of ehr left side,she was like an infant.Her second surgery was a couple days later and she did well with this one.she then spent a month in a rehab hospital closer to home.She spent about a year in a wheelchair. she can walk now with the help of a leg brace but still has no functional use of ehr left hand and arm.I share her story so others will se how unpredictable and seriouse this disease can be.I so wish we could have had surgery before she was left with lasting dissabilities.She works sooooo hard to do the everyday things we take for granted and even though she does this with a smile it breaks my heart.Please know your family is in our prayers and I hope this helps with your advocating for a quicker surgery date.If I can answer any other questions please ask away. Your not alone......
Mary Grace

81 mg of Asprin...all that I need.

Kathleen was put on one baby asprin,81mgs a day as soon as she was diagnosed.She was 5 yrs old and about 30 lbs at the time.This could change as she gets older and grows......Her strokes seemed to be when she was taken off of the asprin for her angio,and for her surgeries.We were also warned to be sure she didn't hyperventilate or become dehydrated.We became obsessed with keeping her healthy.We all wash our hands 20 times a day I think and it's helped to keep her (and us) very healthy.Please feel free to ask any questions if I can't answer someone most certainly will.Continued prayers for your family.Please keep us posted.....
Mary Grace

masonsmom, where do you live?  We have a great doctor here in Florida if you are close.  Have you looked at the list of surgeons on this site?  maybe one that some has recommended is close to you.  I know how important it is to find a doctor/surgeon you are comfortable with.