mg12061 wrote on Aug 19th, 2005 at 5:01pm:Gosh, all that you wrote brings back so many memories of us 3 rys ago. I feel like Kathleen has been through more in her 8 yrs than anyone I know,and she's just so good about it.She works sooooo hard everyday of her life.She put up with so many Dr.'s and therapists and teachers.Like you I feel like she's been given more than her share.....Your son sounds like an amazing young man.
Your daughter sounds like an amazing little girl too.

The problems that ALL MM patients seem to face are hard enough as they are, but then our children are faced with the additional burdens and tasks of not having a "norm" to compare themselves to. They don't necessarily know if something is wrong, or worse, they can't seem to tell us exactly what it is that is going on.
Quote:It's hard to explain all that's happening,We couldn't really prepare Kathleen too much because she was only five and didn't realy have the understanding of even a five yr old.She just "rolled with the punches", and we were there to hug cuddle and reasure her every single moment.Our presence was enough to keep her pretty clam most of the time and happy.She HATED the IV needles though.She was blowing at least 1 IV everyday.This meant a very prolonged(they had a difficult time finding good veins) poking with needles.Finaly under anasthesia for the second surgery they put a couple extra IV's in for later use.(we knew they'de just keep "blowing".
I just passed that information to my wife, as my memory isn't always up to snuff and I am likely to forget it. While not the most pleasant thing to have done, I know that we have gome through IV "teams" at our local hospital trying to get a "good stick", only to either have it blow or for Michael to eventually figure out a way to get to it and pull it out. Hehehe
He gets the most terrified at the "mask" coming at him for anestesia. Mom can't hang around for that one. It crushes her. It does me too, but I know that it is for his own good and that there is noone there that is going to hurt him. Now he's starting to get wise to even the different outfits and the type of "bed" he is asked to lay down on.

That makes it a little harder sometimes... hahaha
Quote:Even with all the complications she had she is doing amazing now.She is learning quicker than ever,her memory gets stronger everyday,and she's had no more strokes or TIA's.It's been a long road but without this surgery she would not be here with us today.This has been a journey I would never have chosen, but it has strengthened our family and given us a real respect for Life, and for any child who is given the added struggle that comes along with any dissability.
I would
really like to talk to you about this. If I am understanding it right, the the surgery is to prevent the patient from having more strokes, but do most patients go into TIA and seizure remission as well? I am extremely happy to hear that your daughter no longer has TIAs at all - God Bless her! ;

Do you know offhand if that is "the norm" for this surgery?
Quote:I remember how hard the waiting was.Some days I thought it was unbearable.We had a 3 month wait.
I can't imagine! WOW! This is going to be just a bit over a month and I feel like I have aged 5 years all ready. LOL I have tried to research throughout this site, as well as any links that this site has available. I feel like I am Dr. Scott's younger brother I have been over his bio so many times. HAHA (His credentials blow my mind!)
Quote:We watched her like a hawk for any signs of a stroke.We became fanatics about hand washing(we were afraid she would get sick before surgery) and keeping her hydrated.
We have monitors all over the house so that we can see him no matter where he is, even if we are in the basement. He had a brief seizure this morning and luckily my wife was in the room with him when it happened.
We make sure he has something to drink at all times too. LOL. That includes a drink on his headboard every night.
Quote:Our life totally revolved around MM.Once the surgery is behind you though it does get easier.I don't worry every single day anymore LOL. It's hard not to think, like your son, that she's been given more than her share but then I see her laughing,or she gives me a big hug and I know everythings OK. It doesn't get her "down" it just makes her more determined.
Sounds like Michael to a tea! Hehe He may have to go to sleep sometimes (most times) after a TIA, but he wakes up and dives into his toys again like nothing ever happened. 99.9% of the time, Michael doesn't react to his situation at all, unless someone around him starts crying. He is much more concerned that something is wrong with
someone else, than he is with himself.
Quote:It sounds like things are moving steadily forward. The MRI's are a very scary thing Kathleen is always sedated,(so far just sedation has worked for her)I can't forsee a time when she would ever tolerate the MRI.Keep us posted......
mary Grace
Three more weeks... Three more weeks... Three more weeks... My God - this has only been scheduled for a week! ROFL!
-= Dewski =-