I was wondering if there is any problems with swimming for an 8 year old with Moya Moya?  I have never heard anyone mention that swimming was a restriction.  We just got a pool from Make A Wish for Amanda's wish.  She is so happy.  She is swimming a lot and she now likes to swim under water.  It's not a whole lot but I noticed she is getting tired (which is natural after being outside in the heat and swimming) however she has mentioned the past couple of days that she didn't feel like swimming.  "I just want to relax".  Just wondering if anyone has any experiences with swimming.  She just had her surgery in April and it's amazing how well she is doing, but sometimes I wonder if she pushes herself more and doesn't tell me all the time how she is really feeling.  She has been tired of me telling her drink more or rest or don't do this and don't do that.  I have sat down with her and explained why she needs to drink and listen to her own body when she is running or doing activities.  She just wants to do what other kids are doing and she gets very upset even when her little sister may do something physical better than her.  I am so thankful that she is even able to do the things she is doing now. But knowing that she has MM is a struggle every day.
Tammy

Hi Tammy

Surgeries in April and already very active, that is amazing. I don't think it's the swimming itself that's a problem, I think she is possibly pushing herself a bit too much too soon. The pressure associated with normal swimming in a pool isn't great enough to have an effect. I believe it's a problem when a moyamoyaer snorkels or deap sea dives, then the pressure can constrict arteries.

I think it's a good thing that she takes it easy for awhile and, in fact, she's doing exactly what you've asked her to do: listening to her body.

Although Luca is a lot younger than Amanda and Dawns daughter, I completely agree with Dawn on the fact that it took Luca a full year to really hit her stride again.

Take care and stay strong
Mark (Luca's Dad)

Tammy,
I was 22 when i had my surgery. It took me a year to "fully" recover. We will never get all the way back to normal but we will get close. We want to be able to push ourselfs to the limits because we are feeling inadequate or "there is something wrong with me" or "i will never be normal". These feeling of watching others do what you used to be able to do with ease is hard on the physci. My husband is my watchdog. "now Becky don't forget to keep hydrated" now Becky let me know if you need to rest or go home" It is great to have someone watching out for us but somethings it is a bit annoying. We are trying to get our independence back to feel like we can do anything.

My advice is to keep doing what you are doing but maybe with less reminders. Carefully let Ammanda push the boundary to the limit  but stop her if you see she is in real distress. Let her push herself to almost exhaustion then talk to her and say "this is what it feels like when you push yourself to hard" this will teach her the limits of her new boundaries. Remind her she is normal but now she has new limits to explore. let her know there is nothing wrong with not being able to do something as well as she could before, she will find a different and maybe better way of doing things.

Your an amazing Mom. Stay strong!
Becky

yunnanababy wrote on Jul 21^st, 2010 at 4:32pm:


Well done Ruby. My son is just on the cusp of putting that same puzzle together and, I must say, it's a huge worry out the way.

Take care
Mark (Luca's Dad)