Wednesday, March 11, 2009

Waiting and Waiting

Is it Spring yet? I tell ya, I really need fresh air and grey and rainy or snowy and wet and yucky outside. zzzzzzzzz
Madies jammys from her Auntie Jennica..(my sister) hahaha
Last week was just a week I want to forget...what a nightmare...SO BUSY and so tiring..On the upside Madie is feeling can just tell...(yeah not a great representation of that in this pic) she just crashed on my bed..but I think its a funny pic...:) She is 32 Inches long if you are wonderin! hahaha
I anxiously await the EEG results and her blood work results from maybe we can tinker with meds again..I would LOVE to get her off ZONE-uh gran! Every other day she gets 100mgs and every other day she is sleepy alll morning..usually springs to life in the afternoon so is NOT that bad...but can be better....
Her weight is still an issue...weighing her at the doctors last week she was 22 10 oz....ugh! why is this weight not gaining??? I just dont get it! she needs SO many calories in a day and she is just not that hungry...ehhhh We have the GI doc trying now to get her Boost Shakes....Well its been another week...over a month now...something tells me this is going to an out of pocket expense.....ugh.
That's another blog.
I dont know what to focus on these days...feeding, weight gain, SEIZURES, cognitive development, physical development, feeding therapy, Occupational therapy.....the list seems to go on and on... Seizures to me have become the oldest story in the book...I just go with em....when she has one it stinks and we go on...almost numb to it ya know...Even more frustrating is that her seizures are SO few that we still cant get her completely seizure free!! she is like 80 percent... THEN on top of that her nutrition is an issue along with all her other developmental stuff..."stuff".....
After that Horrible Genetic Appointment I am thinking we should seek another doc..ya know this guy came so highly spoken if its an genetic problem HE can HELP!...
Maybe he is right...maybe there is not a genetic problem with madie...then what is it? Does she have a disorder or any sort?? Dunno...That too is another Saying that she is the way she is.. and telling me to just wait and see how madie turns out is UNACCEPTABLE to me...

Things aside from that are going..she is a happy camper...smiles and giggles every day...trys her rolling allll the time....rolling into anything have wood floors)..
I look forward to the weekend...Madies Auntie Brenda is coming to visit from Illinois and we will have fun shopping outings and dinners at the families fun.
Whenever I get some news Ill post :)

WAY TO GO AUSTIN! I am soooo jealous you are eating your foods SO well!!!
Did you get that seat yet Reagan?? I want one!! Did you maybe look into if her Early Intervention program will pay for it??? Madie has gotten tons of stuff from hers! Like her noisy box! FREE! Madies OT has never seen anything like it!
Hugs and Huggs

1 comment:

Reagan Leigh said...

I know what you mean about never knowing what to focus on! There really isn't enough time in the day to work on everything! I feel like I come up short every single day! I think first and foremost the seizures have to stop...then a lot of the other stuff just starts falling into place on it's own. I see it a lot in kids that are finally's like a light bulb goes off and things just start to click with them! I can hardly wait for that to happen with Reagan! No we have not gotten the chair just yet. I'm hoping we'll get some cash for her birthday (instead of the useless toys for toddlers) and then we can put that toward buying it. ECI here is worthless, they have no funding whatsoever. It's too bad.