Monday, November 17, 2008

getting there....*sigh*

January 08... what a sweetpea! finally off her steroids...and had been seizure free for a month and a half and by Christmas she was having spasms again! Oh what a little pork chop she was!
Just thought Id share this pic :) It was literally overnight that her spasms changed to seizures..I call up crying and they proceed to increase her Topamax...*sigh...what a dopey drug that was!
Well I am pleased to report we have had no more vomiting...I was freaking out that she was not handling the Depakote well... I actually used my mommy instinct on this one and determined that it may be from giving her all her meds at once...just too too much on her tummy... Specially when she is going to be with empty tummy.....refusing food left and right...I go for a goal of 2 shakes and a formula bottle each day...ugh. We are waiting for her current blood work to come back that I got done on Fri.....
I called the Doctor on call at childreans hospital (fri) and told him of the vomiting and the pills she was on...He told us to skip her Zonegran that night and give her it the next AM...instead..
2 nights vomit free I hope its gone....
BUT what a sleeeeeeepy grumpy kid today...ugh.... I can hardly wait to get her off these drugs! I have to wait it out and just grin and bear it.... already we are at 1/2 her usual dose of its a step forward.. I am NOT increaseing anything unless we get the OK to lower others....just my rule of thumb...
Seizures?? Well.. I saw a small sleep one when she was laying with me in bed this AM but nothing like the large Tonics that she has......Seizure free day?? welll close.....Is this IT?? I dunno. Is this battle over? Oh WHEN her seizures go away we have a whole slu of delays to deal with after that....but i am certain that not having seizures will help.
Oh my baby Angel....
Sleeping finally tonight...Hubby and I are low budget dinner folks tonight with some Hotdogs and!
I am hangin in there...My Physician put me on Paxil to help me with my depression...and my horrible Panic attacks I was having....Day 4 for me....feeling like I am catching up on alllll my lost sleep....never able to sleep so anxious alll the its like I can just plop in my bed and sleeeeeep....Its been along time...I even took a nap today....You could say I am sleeping off all my panic atacks....LOL... Cant explain it. But its like this cloud has been cleared from my head...and the stuff actually is working!
Ill keep you posted...
Oh by the way I quit my job as well. crying and crying telling them I was sorry that I just needed to focus on ME getting ME feeling better and taking care of my daughter and that in my state I was not capable...and I was feeling my life crashing down with sadness..It was effecting everything! I feel another huge weight off my sholders...ready to enjoy the holidays without having to work retail!!!
Woooo HOOOO!!
Hugs mamas
And if i do not blog before than...Happy Turkey Day :) "I have a second helping on ONLY stuffing and gravy rule..." Hahah

1 comment:

Holli said...

It sounds like BOTH of you are "getting there"! I hope so!

How's the vomiting? Austin does that with textures...I give a small introduction and hold my breath...please don't gag!

I'm thinking of you two! :)