Back from Cincinnati

Well we went for Aydens pre-op stuff before the LTP on fri. & everything went great!He had a c-t of his spine & they tried it w/o sedation & he actually did it!,stayed perfectly still! I was so proud of him! Then we saw nerosurgery found out his c-spine isnt "normal" c-1 & c-2 are not calcified & his spinal cord bones are flatt & narrow & the tonsil of his brain is lower than ours.What all this means is he cannot be in situations that can cause his head to tip too far forwards or backwards & we need to do yearly MRIs to make sure his brain stem doesnt slip further down.So for the LTP he wants to do spinal cord monitoring,so that during the surgery if hes ever in a compramising position,they will know & can change it.Im soooo relieved they can do this,my biggest fear was that his brain stem would be damaged during the LTP & now that fear has dropped in half,thank God! Ayden is so happy to be with his sister now,he must have said 10 x a day"I miss sissy!"& hes already squished her cheeks & said "hello,my name is chubby!" & Ava is happy to have her brother back,she keeps smileing at him & trying to go where ever he goes,its so cute! So the next step is to go back to Cincy on mon. & have his vocal cords checked to make sure there moving properly & after that everything should be a go for the LTP on Fri,I cant believe its so soon! So please think of Ayden at this time & send us prayers & well wishes............Angie
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