Monday, September 29, 2008

Hold my breath

Saturday madie had her first seizure free day in a long time...I was skeptical.. THEN when we went to give her her meds that night and she gagged on them and spit them up! I was scared to give her her meds again fearing I was going to OD I waited till Sunday morning and gave her half of her Zonegran dose in the Am and the rest at night...well she had 2 seizures that day....I blame the fact that maybe she did not get enough of her meds....doh. SO FAR today Monday monday I have not seen one yet..she is awake and making funny noises on her blanket.... "whatever works kido" lol...( now she is sleeping....I had to save the draft and continue)


Grandmas report that she was happy took a small nap and ate one bottle and had only wet diapers and no

We have to figure out WHY she is not walking! she is a killer roller but had been doing that for some time now...I firmly belive that her seizures wont LET her walk...the physical stuff will take some time...I fear the worse of wheelchairs and braces but when I think that way I go crazy! One...., a time mama... I am sure when we see the Nuero that they will want to run tests...what if she is a Palsey kid???(cant u see that in MRI??) what if she will never walk??? Oh gawd! I go nuts...I worry sooooo much!! Dont we all??!! Its such a journey this thing called motherhood..they did not mention this in "what to expect" did they?? Maybe they had a chapter called "sucks for you" and one page that said "learn on your own buddy" gah!!

WHEN she DOES walk Oh.....look out for the pictures ladys....I told my husband our new computer will crash cause I will have so many pictures on it! I absolutly love Austins Pics of him looking so strong in that "stand" such a big boy!! I cant wait to see madie jump! isnt that the cutest when lil ones jump! Although I may not get her to jump in muddy puddles for

I cannot strongly say that this seizure journey is over...after over a year of batteling it out? Oh gosh, those lil demons are I am certain wanting to come and zap her! I have the next few days off from work so Iwill be watching like a hawk! I have also been trying her on simple foods EVERY day... Mixed Grain cereal and Bananas... or the same cereal with a veggie.....SHE EATS IT!! Now I cant say that this is the breakthru we have been waiting for but when I can get a few warm spoonfulls down and she doesnt cry and reject the food!! AMEN!! Twice a day for now...we are going to work our way up....takes time. I still need help from a nutritionist to get her off the formula for GOOD~ She actually opened her mouth for her food a few times when the spoon came near!

*sigh* another day.

I was very rushed this Am...feeling like things were moving before I was moving and was really huffy....feeling like Madie was being whisked away....:( But as usual she had a fine day and was happy as a clam....I will make it up to Grandma and frame a pic of madie from vacation for her new beach cottage..AND maybe make something yummy at our next gaithering...:)

I guess its time to go watch my hubby is giving me the I guess I really should make some dinner as well.....pasta it is!!


1 comment:

Holli said...

So glad to hear Madie's seizures are better! So sorry to hear your frustration with everything else. If Austin wasn't so motivated to walk and move all the time, I don't know what I'd do. That is nearly the only thing that will get a spark out of him. He doesn't show affection nor does he want to play with anything anymore. It's killing me to see this disorder take over his life -and mine. I know your frustration and I hope for both of us that our sweet angels will soon be bouncing around like they should be. One day at a time, we'll get there!