we met with Prof Stoodley on Tuesday, he is one amazing man we were VERY impressed.  He spend an hour talking with us and explaining everything.
Unfortunately it looks like all three arteries are blocked :(.  So yes 3 surgeries for her :(.
We should have a date in a day or 2 but he was looking at the beginning of November as he was very worried about her :(.
We look like being in hospital for nearly 4 weeks  :'(.  It is also 4 hrs away from our home and support network so its going to be tough going I would think  :'(.  Any suggestions about being away from home for so long would be much appreciated  :).
Also because Brielle is only 4 she will have to have a general for both tests that need doing before the op so she will most likely have 5 generals in less than 3 weeks.  Are there any tips for helping her body cope with this??

Brielle has shoulder length hair did.  I am thinking it is going to be a nightmare with 3 different incision sites on her head.  Did anyone get their hair cut short in preparation for surgery or is it better to have longer hair to hide the scars ??

Sorry for all the questions
Thanks
Carol

Hi Carol. It is so scary. My daughter is 13 and had two sides done is august. I kept her hair long to cover the scars. Being away from home that long will be tough for sure. We travelled 6 hours for Courtney's surgery, but we were only gone ten days. Try to get family to visit as I found it to be very comforting and somewhat of a distraction to have visitors. Brielle and you will be in my prayers. It is amazing how well kids can heal. Just try to stay strong with her, and have some time of your own, by yourself to let your guard down. We are still learning how to cope with  this disease . This forum has been extremely helpful to me. Lots of great tips from lots of great people. Best wishes to you.
Pam

Hey Carol

I'm glad you've found a surgeon you're comfortable with who knows moyamoya so close to you. At least now there is a plan; it sure beats the waiting and not knowing the way forward. Kids are amazingly strong and not weighed down with all the emotional baggage us adults carry. Stay strong for Brielle.

My wife and I travelled from Johannesburg, South Africa to Newcastle, UK with Luca, leaving my 3 year son behind, to have her surgeries. We spent 5 weeks in a strange town in a strange country surrounded by strangers over the Christmas period. For me, it was never an issue. I would have travelled around the world three times and spent years away from home if it meant getting what my daughter so desperately required. We just do what we have to do because that's what parents do.

4 hours away really isn't much. Family will come and visit for weekends which, as Pam mentioned, will be a great comfort and distraction, and then they'll leave you to focus on Brielle.

As for the hair thing, there'll be a lot of shaving going on with three surgeries. Luca was only 1 when she had surgery so it wasn't really an issue for her.

You are bang on the right track for Brielle. It's only natural to feal fear at this stage, just try to put on a brave face for your little girl, she needs to know that everything will be alright.

Keep strong and keep us posted
Mark (Luca's Dad)

Hi Carol,

Your story sounds very familiar to me …. There are a lot of similarities: Paula was operated in Boston 6 months ago, she was 4 years old and we travelled from Spain to the US (7 hours flight). She had 3 surgeries at the same time and were admitted at hospital for 2 weeks, (we stayed in Boston for two more weeks). As Mark said, It doesn’t matter where you have to go, the most important thing is that you feel that you are doing your best for your daughter, and you must feel comfortable with your choice. As in Mark’s case, everything in US was strange for us (country, city, language), but not people, who were very nice and comprehensive with us and our daughter (as you can see, I don’t speak very well English, but for my daughter, with 4 years, it was like if nurses were speaking to her in Chinese ….).

Regarding the hair, don’t cut it, they will shave as less as they can and then you will be able to
hide the scars perfectly . About  being away from home, our family couldn’t visit us during this time (we have two more kids of 7 and 9) but although you can’t believe it, the skype  was a great help for us …

Don’t hesitate to ask as much questions as you have. We are here to help you.

Stay strong and take care of yourself.

All the best,

Paula

Hi Carol,

Ruby had her first surgery on 10/5.  Her surgeon told me that she would shave as little hair as possible but I was still expecting that she would have a sizabe bald patch.  Boy, was I wrong!  Most of the nurses who came in her room to check on her last night (night prior to her left side surgery) had trouble even finding the incision.

Hope this helps.  Thinking of & praying for you & Brielle.

Jennifer