more questions then answers

So we have more question marks then answers right now when it comes to DJ.

We saw the Pead yeterday. gotta love him. we walk into his room and he looks me in the eye and says "well you've had a shit of a time haven't you" i told him "umm that'd be the child friendly explenation of it"

we got down to the nitty gitty. went over the fits what happend what they did/didn't do what was to come. ruled out a lumber puncure (happy dance time. i dont want a needle in my sons spine if i can help it) but a second attempt at an MRI in two weeks (ish) time. then we got to the blood test results. the last of them. the genetic one.
and we has a winner. DJ is missing a chromosome. q11.2-q13.1 to be exact. meaning? well according to the letter i have sitting in front of me (to give me the figers above) it means DJ will always be DJ. we can't re-grow missing bits but we can work with them.

It says something about Parder-willi or angelman syndromes but we cant stick that label on until DH and I have bloods done. which is fine. 'cept the fact DH hates them. me? i'm used to them.

the pead exected more of a 'reaction' to the news. i shrugged my sholders and told him the truth. DJ is a happy kid. he smiles, he laughs he (in his own way) interects with me, DH and vic. i cannot as a mother ask for more. a happy child. this just means we have more of a defined plan of attack. simplistic i know. but right now thats the level i'm working on. the here and now.
I've googled both the labels but i'm not willing to guess, nor look past more then wiki for an understnanding. in time we'll know and i'll read read read all i can to understand. but for now i just gotta love my son and help him grow.

In time i may start a blog for this. seeing as the whole minus chromosome 15 thing has only really been 'around' or known about for 2.5 years. so growing with it, well is a wee bit unknown. maybe if some one else finds their child with this they'll be able to read about it. learn and see what its like. but we'll see.

once i have my head fully around whats happend then i'll express it. but for now i just plod along. one day at a time one night at a time. and hope that Dj stays happy. as what more can a mother ask for?