After many weeks of being moved from one Dr to another we finally have our daughters opperation booked for the 1st of August at Sydney Childrens Hospital with Pros. Stoodly. We are yet to meet him but have been corresponding via email and he is always straight back in touch.
My daughter has been very possitive about it all looking foward to her knew hair do & awsome scar she'll have when she gets back home. Until tonight when she got upset cause she dosent think the op will work! This is so much for a 7 year old to have on her shoulders, but I know she'll be right.
As we are in Perth and need to travel to Sydney we are making a holiday out of it and spending 10 days there before the op.
Prof Stoodly mentioned with MoyaMoya it generally affects both side of the brain yet Mikayla only has it on her left side, is there anyone else who only has this on one side? She needs to have a blood flow scan to check the right side.
Also we were told she would only need 10days post op in Sydney then she'll be able to fly back to Perth, Im worried about blood clots - although she will still be on her asprin. Im also not too sure how long she'll have off school post op. Prof. Stoodly said he is going to take a vessel from her scalp and re-direct it into the left side of her brain - approx 3 hour op. This is all we know atm as he didnt want to discuss too much over the phone.
Any info on any of the above would be greatly appreciated.

Thank Heavens for this site!
xx

Our son was 7 (last year) when he had both sides done (he had MM on both sides).  He didn't express any anxiety bfore his surgery either.  He did get a "buzz" haircut so the "doctor wouldn't have to cut his hair". After the surgery though is when he needed the most support.  He had severe headaches, general pain at the surgical site, constipation, hated drinking all the fluids, the needles, etc.  So be prepared for your daughter to need some support afterward.  He is doing great. After his 1 yr exam and angio/MRI test he has been given the go ahead to resume his normal activities.  He is good about drinking all the water per day that the dr asked him to drink (without much nagging by me).  So I would say, post surgery she may need you more than before, be patient as it is brain surgery (you can go ahead 2 steps and then fall back 1 sometimes), and give it about a year for the new root growth and "return to your new normal".  Because our kids are so close in age, you are welcome to email me offline.   Good Luck!

Well the op went well but she ended up having a stroke post surgery. She lost use of her right side n speech but we r now on day 4 and her speech is back a bit slurry but we can understand most of wot she is saying. She can move her leg well n this morning has just started moving her arm. we we're only meant to have 1 night in icu but it's ended up being 5. Everyone at Sydney Childrens Hospital have been amazing and we r so glad we flew over here for the op!
She is making baby steps but they r in the right direction!

Yay!  Glad to hear the surgery went well, and yes, sorry about the stroke!   Be patient, the healing takes time. Being in the ICU is hard, but it's the best place for her right now.  We are praying for all of you!