Welcome to the MM famliy. There are many people who have children who have MM on this site. I am a 27 year old who has MM.  I have been treated and feeling fine for about 3 years. I never hurd of MM before as well and I was sacred. But now you have found the best resorce ever, and people who have been through what you are going through or are still going through it. I give you a vertiual HUG to both you and Mason. I will pray for a speedy recovery.
Becky
PS: Set limits to what he can do after the surgery. But let him explore his limits too. Let him know that if there is something that he is doing that makes him feel icky then he should stop for a bit and rest. It will help him understand there are things he can and can not do on his own.

Welcome to our MoyaMoya family. You found an excellent place for before during and after this whole journey. There are so many loving people on here to offer support, encouragement, hugs and even phone calls from a comforting voice from someone that has been through it or has a family member that has been through surgery, recovery and every emotion that comes with it. My prayers are with you and your family. Any questions you have, don't be afraid to ask.

Reagan

My daughter just had her surgery Dec. 22 so it is fresh with me as far as what you are going through.  My daughter is 10 years older than Mason so we have the advantage of her being able to communicate what's going on with better.  I'm sure even at 4 he can tell you a lot.  I agree that you should let him know he has limits but also let him explore them within reason.  You won't get much sleep for the week after surgery so be prepared for that.  Take care of yourself because it will wear you down.  My daughter is already off pain meds and looks 95% better.  Still has a little swelling.  Just ask lots of questions of the staff at the hospital...they can explain things for you.  We panicked when Destin's head swelled up very quickly...turns out it is normal. 

Keep us posted when you go for surgery.  We will keep you in our thoughts and prayers.

Donna

Hi Cherise

Welcome to moyamoya.com. You have found a place where everyone is, or has, gone through what you're going through. My Little Luca is 1 and had surgery on her left side about 4 weeks ago and is doing very well. Not many people in South Africa had heard of moyamoya and we travelled to the UK for her to be operated on. We are now preparing to go home on 3rd January.

Why don't you tell us a little bit more about Masons situation? Did he have strokes? Does he have it on both sides? What sort of surgery is your surgeon talking about doing? The people on this site are exremely sympathetic and knowledgable on this subject having all been through it. We'll go through this with you even if we can't be there in person.

The most important thing is that it's been diagnosed and you're doing something about it. It's through this period that you'll discover just how resilient and strong children are.

I'll be thinking of you through this difficult time. My email address is themullys@mweb.co.za

Mark (Luca's Dad)

It is so wonderful to read all of the notes of support from so many of us who know just how you feel.  Our son was 4 when he was diagnosed and had a very advanced case on both sides of his brain.  He suffered from multiple TIAs, 2 strokes and headaches.  He had surgery at Columbia Pres. in NYC by Dr. Neil Feldstein (who is absolutely WONDERFUL).  Our son is now 14 and is doing very well with the exception of battling chronic headaches.  He gets checked frequently and so far, has been getting great reports from the drs.  I do know what you are going through.  It is the most awful thing to deal with but I want you to know that you will get through this!  It is so great to have this blog as a resource as well since at the time when we were going through it, we felt that we were the only ones in the world.  It is scary but I am sure that your child has a very good doctor who will do what he/she can to make this better.  You first wrote awhile ago so I don't know if the surgery has been done yet but please know that you will be in my thoughts.  Best of luck and keep us posted on how you child is doing!