Friday, November 6, 2009

Just a Moment. (of sorts)

Had one of those "Its effin not fair" moments the other night that brought me to tears.
I LOVE LOVE my cousin-in-law she is the bestest! She has a daughter who is the same age as Madison and just welcomed a wonderful little baby boy into the family! Now it was not the pictures of her trip to Disney that made me sad..they were cute as can be with her daughter posing next to Mickey Mouse and riding the teacups...
It was MY DREAM. I wanted to take MY KID there...I wanted to take pictures with Mickey and see Madie run thru the park happily taking in the magic...
AT that moment she had everything I wanted..
I was just beyond sad for my baby girl and looking at her how beautiful she is and feeling such an overwhelming sense of unfairness.... I wanted Madie to go with her daughter and cause so much trouble thru the park that we would not be able to keep up with their wizzing little selves...
I am by no means being bitter against her..I hope I don't sound it..heck yeah, Im jealous. And wishing that was Madie standing by Mickey Mouse..

Well Preschool has been a tough pill to swallow some days..
OH not for me of course..I just LOVE dropping Madison off to be cared for even if its only 2.5 hours..
Madie does it to herself waking at what she thinks is 645...being now 545 and school begins at by the time the day begins she has already been awake for nearly 3 hours er so.. SO bout 10ish she falls asleep in the class..
She gets home and she is hungry- usually refuses her all forms of food while she is there. killin me that they waste a Boost Shake...but aside from that...
Now maybe an "evening class" LOL like 3-630 or even a 2-430...after naps and fed and ready to go!
Can we come to a deal?
Yesterday I was standing outside with the other moms..still have yet to really converse and never make the first move in conversation..standing there with my child in her wheelchair/ the other kids run all over the front entrance wat greeting their little Madie is sleepy and could care less. Dropped her off and wanted to grab her back and just coddle her to death....
Other moms are nice but ya wonder what they think.."oh, that poor child" "what could be wrong?"...
OK coddle is not an option..but a very over protective impulse comes over me. Does that make sense?

Im Med news we have doubled her Banzel in the AM now at 400mg per day total. 200 in AM and 200 in PM...I worry with any increase..we give it another week and then MAYBE we can go down a little on the Depakine...we had initally increased back in May when Madie had a breakthru tonic clonic...but honestly..she has been pretty free of those going on a year!! Its these damn "drops" that are pestering her by no means is Madison seizure free...but she is BETTER...We move forward.

I have been having hunches that Madies seizures are in the left side of her brain...she tends to fall to the left side..hints the lovely black and blue marks she gets on the side of her head..:(
OOOO Completely off subject!
Oh we are goin baby! We just had Madies records from Hartford sent out to Dr Seizure himself... really hoping to get BACK in maybe the beginning of the new year. Ill keep ya posted on that! Dont know an exact date but we will work on that.
All in all things are going.... Hubby and I are off tomorrow night see an old friend play...well we have seen him play in all the different bands he ever played in and he is SO awesome! Its going to be him and another guy guitar jammin. should be a fun time. Thank you Grandma for babysitting!!
Keep all the little ones in your prayers and thoughts.

No comments: