forgive me if this isnt coherant (sp) its 1240 am and im tired but cant sleep, the respatory therapist is in the room here now giving zach a breathing treatment, zach is snoozing away with his eeg head wrap ever so slowly coming off. he has been hooked up for 9ish hours now....its suppose to be a 24 hour test, though im just not thinking he will make it. last time the 24 hour test was reduced to 18 hours.
sometimes i think of all the medical jumbo-crapology ive learned over this past year and wish i hadnt heard of it, but of course just because i wouldnt have heard of these terms doesnt mean they wouldnt have occured....zach had congential diaphragmetic hernia before we had heard of it, and of course he occured everything else prior to ever knowing about it, but of course when i learned the terms i researched and now know far more than id like to on much of this medical terminology. like i said its late and im having a moment, this may end up as a pity post but i will try not to let that happen. tomorrow we should find out results for the EEG. maybe i should hold off posting this until we have the results?maybe, but my gut tells me i already know the answers, why...because of research, and due to this research i also know many many many of the worst case senerios.
if zach does have infantile spasms, given that with his developemental delay (he is still currently on about a 2 month level, i could see this road getting even harder. what if zach just doesnt progress? i havent by any means given up on my precious boy, but what if he is forever young, dependent on us for his everything. what kind of life is that for him? or is it still true with the saying, ignorance is bliss and since he had never known anything else he is content and happy? speaking of content, zach has been the most well behaved baby, he doesnt cry, unless he is in pain, he is content to merely be in one spot for lengthy times, until doing more reading i thought this was merely his personality, i see now its his developmental delay....ugh i hate those words, i want to crush them. so many labels, but they dont change one thing...zach is zach, no matter the label he will always be zach, and we willl always love him, but i wish for so much for him and to think of him not having those things is heartbreaking. were coming upon his first birthday, he cant eat cake...he wont even let a pacifier get in his mouth without unloading the contents of his stomach everywhere, he wont take anything orally, whats a birthday without cake? and its not like he can play in the icing...he doesnt do anything with his hands, he cant sit up, this is completly a bum to me. anyway please pray for no infantile spasms tomorrow on the results and maybe i can move past this grim mood and try to regain some positive outlook.
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