Thursday, November 6, 2008

Madie and her Bumbo...soon to be broken

Once I got her out of the BUMBO trap happy as a clam...LOL Lol lol

GEE do you think it's time to retire the BUMBO?? lol lol

She totally is pushing with her feet backwards tipping herself back~ yet, if she does get out she will way does she use her hands and arms to get out..look at those little fists! not about to touch anything!


Well I called the Neuro today and they humbly apoligized for not getting back to me till nearly 5..but that aside....

I told them that Madison is very lethargic and irritable and refusing to eat etc... Ive been instructed to go ahead with her med increase tomorrow to a whopping 2mL..and to call them by tues..or earlier if her behavior persits...Persists?? uh...not gonna get better with more drugs! eh? I am real concerned that she is refusing even bottles! ugh...with the pressure to get her to gain weight....Its so frustrating...

Well we already know that we will "eventually" get her off her Zonegran and Clonopin...which aside from Clonopin making her sleepy two hours after she takes it..both have been well tolerated drugs..I feel like Zonegran is our "topamax" the same feeling of just being comfortable with it...but to my surprise she did better when we got rid of the topamax!! more alert..happier...I thought for sure Zonegran was it!!

Austins mommy says he's on that did nothing for madie but doc said its a good drug..expelled thru urine and doesnt hurt kidneys etc... Infantile Spasms to me are just something we personally had to let run their course...they are horrible..we honestly couldnt rid her of them till one day..poof..they were different seizures... I WISH I HAD A GOOD STORY about Spasms...Now I just hope to in the next year have pics of my big girl standing!!

I think to myself what do we all have in common that gives our babies spasms?? Aside from being kick ass fighting moms..... Is there something we all carry or something that we all do in our lives that has caused this?? I blamed myself for a long time for Madie being the way she is...ohhh did I ever...knowing that all my siblings faced learning disabilities to some extent...I would tell people I grew up in "house of disabilites" gah! I have a pic of my Brother I have to scan and post someday I will tell u about him....I have not seen him in over 10 years. I cry with guilt thinking about him..and how great our childhoods were...

ANYHOOOOO I guess we are giving it another week...and then maybe another week...and hope and pray that little kiddo here begans to wake up for the first time in a year!
Can u imagine her riding a small bike? or walking? or getting herself around? These things seem so advanced to me now....I cant fathom.
Well I got soup boiling on the stove...its just me and madie tonight Hubby is out in TEXAS at a Nuke Power Plant overseeing a well drilling project....he says he is in the middle of nowhere...he had to drive like 2 hours from the airport to get to the hotel....I miss him...gets spooky at night.,
Till next time.

1 comment:

Holli said...

Sorry to hear there's issues with the meds. I know zilch about Depakote, but I was hoping she would tolerate it anyway.

Austin's off the Keppra now. It was nothing but a nuisance, and I swear spasms got worse -just like ACTH -maybe just a coincidence.

Where abouts is the hubby in TX? Could be in our neck of the woods with all the plants and pollution! Listen to me, I sound like a true Texan!!