Well hello again. :)
my latest update is well....kinda waiting...
Since Madisons blood work came back with slightly elevated liver we have lowered her Depakote back down to 3ml twice a day...and lowered her Zonegran to 100mg every other day..which has given her a MUCH better appetite! she is actually eating ounce wise what they want her to eat..if only we could squeeze in that 2 jars of food they want..Sorry, when I say "they" I mean the feeding team folks..:) and the Neuro lowered her meds..:) Nuero also says he wants to do another EEG! Baccccck to EEG to see where she is seizure wise...well I can tell ya that in my blog! But we are waiting for the call from EEG folks to get Madie in..and after he wants more blood work as well.
Isnt it crazy how they can detect weird brain waves even when they arent having a physical seizure?? crazy!
MAdison is much more awake without all that Zonegran I tell ya....and seizures? well...*sigh* ya just never know..the annoying twitches persist...and sleepy seizures as well...big ones that are scary are few...but these are nonetheless Seizures....I have seen no Ill effect from lowering her meds...dunno why we had a bad spot with those few days of bad seizure....strange how this works...I am still convinced we are on too many drugs..and working my heart off to get Madie OFF some...still persistent with that half a tab of Clonopin! gah! She was a zombie on 4ml....that may have explained the liver...eh?? dunno.
We are also STILL waiting to get Madies high calorie shakes..her Boost 1.5 I have been on and off the phone with some lady named Linda from the Pediatricians office trying to get the script for them and insurance aproval...I have no idea if its a insurance thing or if they cant find these things...who knows but we have wasted about 2 weeks of madie eating well when we could have gotten these shakes down the hatch!! We absolutely NEED her to gain weight. I Verrrry calmly(you know what I mean...lol) asked for the Pediatrician herself yesterday after I tried to get this Linda person and was told she was on the phone and to leave a message.... The Pediatrician was summoned and came right to the phone.. very nice telling me she will figure this out...says she wrote the prescription....and will call me today. Promised.
Oiy and Oiy.
We also have our GI appointment next week...dont know what to expect but if they say G-Tube Im walking out... maybe they can give me something that will increase her appetite? is there such a thing??
We head the day after to Genetics...Im not really up for thinking about that right now but I am terrified of any tests they may run...
We also are hoping soon to get Madie into her speech therapy/feeding therapy sooner than later...jacking up to 3 therapy's a week! yippers! I guess it will keep us busy eh?? Cant we just go play in a park instead?
I do not have the ability to get pictures on this blog today...I am using my hubbys work laptop..our home computer is having monitor issues...the dang thing is burnt out..I freaked out thinking I crashed the computer! LOL...nope..shotty monitor. I will muster up something next time :)
Thinking of you all...Austin you are such a BIG KID! eating all that big kid food! Ohhh man I am so jealous!!! hahaha
Cami!! where are those B-day pics?? hahaha
Oh lil Reagan sweetpea..you are such a fighter. hugs and kisses from my madie...keep us posted.
Keep Prayers for lil Zoey too...I am touched in my heart by her.