Friday, July 31, 2009

i have a question....

we are planning on going to home to maine for christmas this year....we would be flying of course, and it dawned on me that milo turns two in november so he will no longer be allowed to fly on my lap...

so my question is...does anyone know if they ever make exceptions to this rule? i would hate to spend all of that extra money getting him a seat of his own that he cannot even sit in. He is very small, only 19 lbs right now, and i doubt that by christmas he would be anymore than maybe a three or four pounds heavier. and he isn't sitting yet and has quite a way to go before he reaches that goal, longer than by christmas...

so if anyone knows if it is possible to convince an airline to make an exception please let me know! thanks.

Sunday, July 26, 2009

on a lighter note...

thank you everyone for your comments to my last post...the rational part of me knows that a chart is just a chart, and no piece of paper can determine what milo is capable of, but sometimes the irrational part of me takes over and i am a worried mess. i am very lucky that i have had the opportunity to have "met" such a wonderful supportive group of moms through this blog that can snap me out of it when i get like that.

on a lighter note, if you want to feel uplifted and have a really good laugh, watch this video!

Sunday, July 12, 2009

thinking about the future makes me cranky

the closer we get to milo's second birthday the more scared i become....scared about his progress, scared he is still not sitting, scared that he isn't even close to being able to sit, scared that he still cannot hold his head up on his own, or roll over, or clasp objects in his hands for longer than a minute. i am scared about the future, and what they say about turning two...if a child with cerebral palsy isn't sitting by two they probably won't walk...that is really, really scary to me.

if he were to turn two today then according to the chart he would be in the level five classification of cerebral palsy, the most severe....the most severe? i can't even wrap my head around it, because to me he is this bright, charming, funny little boy who's body won't let him move correctly...i know he is developmentally way behind, i don't like to be around other kids his age because i don't like to start thinking about the stuff he should be doing at this age, i don't like comparing...it makes me sad and i avoid it, and now i really don't like looking at the cp chart...

i hate that i am dreading his birthday, birthdays are supposed to be happy days you look forward to, and all i see is a deadline....milo needs to learn to roll over and have better head control by sept 27 or else he will be at the fifth level....as if it even worked that way, milo goes at his own pace and will roll over when he is ready. i try to stay positive...but sometimes it is really hard to keep a positive attitude when your just so pissed off at the whole situation, it's not fair...why milo? why anyone's child? i effing hate cerebral palsy.

but i love this guy....

Monday, July 6, 2009

milo update....finally!

it's been so long since i last posted, I was supposed to tell everyone about the whole hospital stay but honestly there isn't too much to tell, like so many things with milo it was a mystery. he was vomiting repeatedly whenever he was on his j-tube feeds, when he wasn't on the feeds he was still not feeling too great but not vomiting, so at the hospital they stopped his feeds and put him on an iv for a couple of days and did a ton of tests, which all came back normal. when we started his feeds again he did better, so we went home.

everything is going great right now, milo has been feeling really good, i think this is the longest stretch of him being healthy and feeling well we have had in a long time, if ever (knock on wood). the only issue he has been having lately is teething, which is a nice, "normal" issue that all parents deal with! he is getting his upper molars, and he is not happy about it, his z-vibe helps a lot...

jesse recently got laid off from his job, which sucks. we have been doing a lot of job hunting for him...so cross your fingers that he finds something soon. although it has been nice having him home, and he has been really helpful, it would be nicer to have him working!

so that is what is new with us.....i will leave you with some new photos of mister m!



 
.