Friday, September 25, 2009

A week for the weak.

Ive been wanting to blog for awhile but really just cant get my thoughts together..its an ADD Seriously. Im just WIPED OUT this week! Husband FINALLY comes home today just in time for me to not slip off into a stress related coma!
WELL anyhooooo..I just read Austins Blog..I cannot be more on the same boat. Its so frustraiting with doctors who just DONT KNOW! Its really just a medication game.As far as surgery well if he is not a candiate then he is not...dunno what to say on that. we never really persued that option for madie..she does however hold that one arn at times JUST like Austin does! I feel like with Madie we rid ourselves of ONE type of seizure and ANOTHER comes...Ok so Spasms and Tonic Clonics were devisating! Horrible as we alll know..and when we finally got rid of those we are STILL facing this stupid Jerk like seizure that knocks my big girl sitter down :( Sometimes they are bad..Never in a cluster but they can come say...oh 3 in 10 minutes or like 5 while I am trying to feed her...
I was calling Nuero folks last week and heard back yesterday and since I have a pair of coordless phones that float around the house constantly I was unable to get the call! I called back right away only to find everyone was on I called back about 2 and have not heard back yet..
The message that was left on my phone was to increase her Zonegran by double. 100mg at night. (thud in the background..oo she is OK) she is on 50mg now. OK Ok I was kinda frustratied well..upset because there was talk of getting her OFF this med! Oh no no no no no no Im not increasing this! cmon! THIS was a med that took her apettite and made it SO FUSSY...she was refusing to eat so much...just plain not hungry really. My 3 year old is 26 pounds!! 26! Ohhhh no no more Zonegran...ZONE-gran puts her in a haze too at high dose...UGH!
She explained that she will call the pharmacy and change the prescription so I can go pick it up...
Wait a sec!!?? Well I hope to hear back from them today.
OMG can I just tell about the preschool visit yesterday as well!?
Ok so we were going to do an OT session in the school classroom with all the kids there and also get a feel for what her room is like.
I meet her therapist in the lobby and we sign in.
(jaws theme)
We get into a room running a muck of lil preschoolers. teachers handing out their names on tags that they can hang in ther different play areas and as they call the names each kid gets the tag and they ask "where are you going to play joseph?" and he says "Block Ar-we-uh" and scurrys off.
We are greeted by 3 very nice teachers who welcome madie and point out to the kids who really care less that there is a "new friend" in the class..
Madie was the smallest kid there. she was so small compared to these kids!Seriously looking half the size! I sat her on the carpet and we just talked to her and showed her beanbags and eh...
I chatted with one teacher as her OT did her things...
I dont know what madie was taking in from this place. I hope someday alot more than winey and sleepyfaced...
We sat her in a little wooden chair with a strap and showed her some playdough. of course she is not going to reach out and grab it unless its a sheet of krinkle paper or one of her toy links but we mushed her hand in the odd smelling stuff and she hated it. cryed.
When playdough was done after like 5 minutes(hey they only have 2 and half hours in a day! LOl) the other little boy at the table promtly collected all the dough and put it back into the container and even washed his hands after. Im thinking "geeze he sure likes organization and cleanlienss" then I thought maybe he will grow up gay.
I was really left without words when I sat outside on the brick wall with madies OT as she wrote up her report.. "Its a school for normal kids" I say. "If I had all the money in the world Id send her to a private school..the best you can get for special needs kids" I wanted to cry but kept my cool...(literally, it was boiling hot in that room) I JUST dont want my baby girl to be judged....Ok so she IS overprotected. NO DOUBT I have a coddled kid! OK I said it! I was also feeling a certain unfairness..WHY ME? errr WHY MADIE!? I just want her to run and play and get over this damn seizure crap and bad eatinig and...and....Just Raise a little Girl!!
She is the sweetest most beautyfull little girl in my eyes. hey no offense folks. LOL
All those Nuerologists need to have kids with hard to controll seizures...and THEN we can see some REAL progress!
"just sayin"
On the upside she did enjoy music as i bounced her on my knee and she even giggled. I had no toys from home to show how she can really hold things...I tried to get someting in the room for her but they are all REAL toys not the baby-like collections I have at home....
Everyone is telling me not to worry and to just let the school do their thing with madie and watch her GROW! (insert pictures of weeds in my backyard)
Well anyhoo....I guess I am spent. Literally. I did some shopping this week....Spent alot at American Eagle for Miles COusin(and myself) whos has a b-day this weekend. Her clothes are eaither horribly oversized or horribly too small...good thing its winter soon and she can retire the booty shorts..! eek.Feeling that pang of guilt and may just return my sweatshirt I bought.
Saturday is a big tag sale at my mother in laws house I am shocked she is allowing her stuff to get sold. now when I tell ya she has ALOT of stuff...I am not exaggerating! ITS TIME!
I will also have my own little table of stuff...:) have to go out today and get some Dot stickers for the prices.
In the meantime.....Hubby? Well she is ALLLLLL YOURS! XO
Hugs mamas
PS Ok I know long enough blog already....ugh..
JUST got off phone with "nurse deb" from Nuero... I told her that I do not want to go up on Zonegran and that I am not game for this...
Well she tells me that Madies EEG was not good...well DUH and that she is not having Infantile Spasms but a "modified version" of them...WTF??
Gawd folks I am so spent. Spasms or no Spasms? Saying that the drugs have not effected her growth and development that her brain is just not wired right...WELL DUH and (whatever about the drugs) Saying that BANZEL is more on the market for these types of seizures that Madison is having....and that we can get her off her Zonegran and get her on a low dose of Banzel.
Denying any side effects other than sleepyness....well I told her that madie is beginning her school soon and I really would like her to NOT be a drugged up kid!
Ill keep ya posted. Im spent. Looking forward to weekend now....Its gorgeous outside today! on a better note.

1 comment:

Sophie's Story by Elaine said...

The transition to preschool is hard. Sophie was the only nonverbal kid in the class last year. I was scared. She couldn't tell me how her day went. I didn't know if her teachers would have the patience to figure her out. She was having about 60 seizures a day. But it seemed as the days went on and I would talk with them when I picked her up, they really knew her. Knew her little quirks. Knew if she was having a good day or bad. And they seemed to really care.

I hope you find this to be true for Madie when she starts preschool.