Hey Everyone!

I haven't been on in awhile, but I wanted to say "Happy Holidays" to everyone!  We are doing much better around here finally.  We have a HUGE Christmas planned since last year was so darn miserable with Zach's diagnosis being so new.  My in-laws were supposed to be here, but the blizzard hit NY, their flight was cancelled, so they are not coming.  But, we aren't letting that get us down!! 

Zach did a lot of jumping in a bounce house the other day.....I know he's not supposed to do that, but he LOVES those bounce houses.  Perhaps I'm a bad parent for letting him, but it's Christmas.  Anyway.....the next day he kept complaining about his legs hurting.  And, of course, I was questioning my decision at that point and wondering if he had done permanent damage!  I thought muscle deterioration wasn't supposed to hurt?  Maybe he just had normal muscle fatigue?  Maybe I'm over thinking this, but I'm just curious about others experience in this regard.........any feedback is helpful because if I REALLY need to be stern about not jumping in a bounce house from now on, then I guess I will. 

Anyway, it's Christmas eve......over here its the calm before the storm.  Cause after Santa delievers all those toys, it's going to look like a hurricane came through the house!  Eat, drink and be merry everyone!  No lumps of coal!! - Leighann

When i hit my knee or something its rly painful and it stays so very long, almost everything that causes pain to me stays very long, but i've never got any permanent damages

hi , hope things are ok with Zach now...when keown over does the excerice he complains of his legs been tired and he rests i give him calpol if needed for the aches.....Was zach urine ok...the reason i ask is when keown over does the excerise his urine is brown and he needs to rest and have plenty of fluid to flush out the kidneys..when i mean over does the excerise it could be playing on the tramaline for 10 mins.......keown uses the word tired and hurting with his legs this could be the muscles cramping..but the only way he knows how to explain is by saying tired or hurting....hope zach is feeling better xxxx

Hey,

Thanks for the reply.  He is doing fine at the moment.  He just had his cardiology appointment and checked out ok.  He hasn't really progressed much with the disease so far.  Of course, I see him everyday, so perhaps I wouldn't notice a small decline.  He has had a few nasty falls that resulted in huge bumps on his head (and a trip to the ER).  When it rains, it pours it seems.  But, all seems well for now....................hope you and yours are well too.  - Leighann