Friday, November 21, 2008


Well I suppose I have a momnet this Quiet morning at 6:54am..Little one actually went back to sleep after her bottle this Am...
First happy to report there has been no more vomiting..thank god! We switched her Zonegran to the morning instead so she is not getting 3 drugs at once at night...I KNEW IT! Anyhooooo We are still only halfway there with the wein of the Clonopin..its a heavy one so we go slow...but getting rid of that alone has increased her awareness..its amazing how she focuses on me and grabs hold of my shirt when I am carrying her..although not a strong grip she is gripping! I have noticed a little more reaching and just the other day I am getting her out of her carseat and I unbuckle her and both arms go up like she knows she is getting out. If only she would say "up mama" I would melt!!
She is still generally sleepy...yesterday was a grumpy day with her sleepiness... she had been up at 3am talking in her room...just making her usual happy noises...then she was up at 6am...and would not nap! she crashed at about 7 last night...after a day of winey...grumpy...ugh! I am still seeing seizures when she sleeps and far as the awake ones I cant say I see those often....stiilllll having seizures no doubt... ON GOOD NEWS...yesterday she finnnalllly ate more than 2 bottles! she had a full day of meals...GOOD GIRL!! We shall see what today is like...(knock on wood)
Mommy instict tells me that when we are able to go up on her Depakote and get down on the others she will get better...good ol transition time....
I am needing her to gain some weight...Another mommy instict is that when we increased her Zonegran to 200mg 3 weeks ago her appetite just declined...but no doctor wants to hear that...
"you know the drill"
One step at a time.
I am super excited for Turkey Day...I just love how the whole family gets around the huge table and chats and eats and chats and eats...mmmm against alllll diet regulations...:) :) I will brag some more and say that my greenbean casserole is famous. LOL.
Well gang....I dunno. I guess I am fresh out of topics...I should go get my day started..the sun is comming up now. :)
Cami Girl I will keep you in my are a trooper...I cant imagine what our kids go thru with all these seizures and pills and doctors...
I still feel like my journey is far from over.
Austin my main are trooper as well I have not forgotten you! keep working on that standing and tell those nasty spasms that you mean business!
Hugs mamas

happy Turkey.

1 comment:

Holli said...

Oh, thank goodness the vomiting is under control! I'm still crossing my fingers that the Depakote is gonna work and that she can manage without all the other junk! The more meds, the more confusion! You can't tell what's doing what! I hate that!

Hang in there girls! Austin and I are right here with ya!