Thursday, February 24, 2011

The start

this blog is one for me, a mummy of one special little boy to talk about the ups, the downs the flip-you-up-side-down-face-plant times and everything in between times.

I call it the gray road as its a road less trodden, one that even the people in white coats are still unsure of. that 'gray' area that over time will become clear - to those other mummies who will ave children as special as my little man.

My Little man is DJ. He, as of today. is 2 years 3 weeks and a few days old. in the last two years i've learned so much from him and in the years to come i hope that it continues.

Two years ago i birth my little man. into this world. 31 hrs of labor and an hour and 20 of pushing. out came my blonde bombshell. we had issues, fluid on the lungs followed by toung tie followed with failure to thrive and reflux thrown into the mix to boot. but he was happy. still is. none the wiser.

A month and a bit ago we started looking into his delay. the first label of "global" delay was thrown out there. as a mummy i knew that meant alot. he needed help. all sorted. blood tests are done. 24 hours later DJ has his first fit. epileptic, but as it was his first it would remain "un-treated" until such time he had another. as all babies with delays have a higher chance of that happening (wow, thanks for the warning people in white coats) so we have his second birthday. this birthday passes. a day and a bit later we have another fit. this one stronger and more full on than the first. we get moved to a bigger hospital my husband (DH, from here on in) stays with DJ. they do CT's more bloods nothing. i talk to our 'treating' pead. he says DJ - at that point- was "annoingly normal"
we start of anti-fit drugs and DJ perks up. the theory of there being fits in the back ground may have rang true.

Yesterday we see our 'treating pead' again. with the very last of the blood tests. this one comes back with something abnormal. part of me was feeling ok - finely some kind of answer.
DJ is short a chromosome. chromosome 15. at cytogenetic ban q11.2-q13.1 i have no idea what that means. but nor do those in white coats. had this happened 3 years ago DJ would be 'normal' 2.5 years ago they found they could see this gene. or chromosome. so now they label it.

Right now it means very little. my other, younger, son seems 'fine' DH and I need to have bloods done. which we will. until then. DJ is the same little boy he was two days ago. just he has a new label...but his original one sticks.
Blonde Bombshell.