Wednesday, April 15, 2009

Today Today :)

Madie Madie Madie... Today we head to be continued... In the meantime we will be thinking of Austin who ALSO has a nuero apt today! hahaha "oh join the club"
Ill hold ya over with some cute pictures of madie in her element...ROLL! and trying to CRAWL!! LOL! Please hope that Dr D gives us good news that Madisons liver is doing better! Eeek!

Yessss! Good Liver! vitamin seems to be helping! Doctor now wants to begin weining her off her Clonopin...Eeek! Now I have heard horror stories of weing off clonopin..(thanks Karen!) we are going to get itty bitty in breaking her tabs now...a half of a half of a half...ugh...juuust to finsh what we have...she is on .05mg now...half a mg tabs.... So its not alot but its heavy stuff.

I am always nervous about getting her off any the past it was always trying to get her off one so we could try another...since her seizures were so bad we just kept on going...and weather we weined her off or the other it made no difference...BUT now that she is feeling so good and seizures are so good...I just dont want to see any sort of increase...We just move super slow and watch madie like a hawk! I just want her strong and off some of these drugs....scary scary..She has always been quite tolerant of her meds...sometimes we do see a seizure or two when we get off wein has been horrible....knock on wood.. Doctor feels that Zonegran and Depakote are working together we do not touch those two..:) ehhh Ill deal with that! Rough Morning this Am...(an early...well 530am) I was seriously dreaming of a beach...and I was eating lie... when I am woken by a shrrrillling scream of madie in her bed...! I kinda laid there thinking that maybe she would calm herslef down and she would just go back to sleep...I could hear my hubbys thoughts of "juuuust leave her...dont go in...." repeating over and he tossed... NOPE. I go in and she is rubbing her eyes... and biting her hand and kicking her feet and screaming! Nightmare?? or Teething?? I had no clue...I sat with her in my bed but she was just too squirmy arching her back and fighting me....then I just put her back in her bed and BOY did she scream then...I ended up rocking her in the chair for a few minutes and about and hour later she was calm. and sleeping...whew. Dunno folks...the ol molars are comming in or she is night terroring...ehhhh

After all was said and done I was dreading a day of too many appointments...we had to go to Speech at 10 and Dr D Nuero at 1 and PT at 330..I was thinking of Reagans mom as she has so many therapys fo reagan...seems like on a daily basis! As I tried to drift back to sleep the phone rang reminding us that speech lady was on vacation and that there was NO speech today! Woo Hoo! then a few minutes later PT cancells! Woo Hoo! Amen! I was back to sleep and woke about 930 to a happy madison in her crib...and the day was good. Only Neuro today :)

She is such a tumble bunny...bumping her head on allll kinds of things..the floor mainly but her noisy box, the railing and my foot were the funniest of bumps....she is trying so hard to get moving...oh lil one...YOU WILL GET THERE!!
Look at that tiney hiney! LOL!!Hugs mamas...Ill keep ya posted. now cmon blogger save my post.....(3rd time typing this)


Holli said...

So glad to hear that everything went well...and your day was free for just the neuro...can't imagine juggling all that in one day! If I can help it, we have only one event a day!
We got instructions to trial a new med...Banzel. We'll see...

Karen said...

Fingers crossed that the Klonopin weaning goes well. It was a disaster for Cameran at first but later on was sucessfully weaned. But rememeber they are all different and react differently to the meds, so no worries. She will do great.
And look at that girl she really seems to be trying to get around better and thats fantastic news. Little by little and she WILL get there!
Sorry I've not commented in awhile its been crazy around here. Lots of Dr appts and the school routines are wearing me down into the ground. Always on the go!!!