i just heard some news from my TAPVR support group and one of the little guys EARNED HIS WINGS....i am in complete shock...this little guy was just about the same age as matthew AND their stories were SOOOO SIMILAR....this little guy also had TAPVR, cp, siezure disorder, delayed, the list goes on....but most of all, this little guy had been having szs just like matthew where they would last for an hour plus and would mean that he would be taken by EMS and such...we use to trade stories, news on meds and stuff...this little guy had been doing well and he passed away after having an HOUR 1/2 SIEZURE and ASPIRATING...OH MY GOD, THAT IS ONE OF MY WORST NIGHTMARES........how many times has my little guy stopped breathing or breathed inneffectively during his BIG SIEZURES?! this could have been MATTHEW!!! THIS COULD BE MATTHEW!!!!!!!!!! i am in shock and just scared.......i ran in to check on matthew as soon as i could get up on my wobbly legs because i just had to make sure he was ok....
my thoughts and prayers are with this family.....
Monday, January 28, 2008
from being happy to devistated....
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this is so very sad. I honestly did not know that you could die from a seizure. I see how it can happen now. I just don't understand so many of the "what ifs" -- I guess when you are not involved personally you just assume if someone has survived the hard part that everything else will just sorta get better progressively -- like with the flu. You get it and get better then you don't have it anymore.
YOU HAVE A STRONG FAMILY MARIA! You and James are amazing. You all are in my prayers as well as this other family.
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