Ok..whats going on..well we have a few appointments coming up for miss Madison...got a call yesterday from the GI folks at Children's hospital and they asked me when was a good (wed only) time for me to bring Madison in for a Barium Swallow study..told em did not matter...she said she would go check with radiology and call me back...like 5 minutes later she calls...NEXT wed!! Feb 18th!! We are in! She made it sound real easy..told me to bring some food..bottle whatever and I would hold Madie and they would x-ray....hmmm..I seriously imagined this contraption that keeps her upright and me trying to feed her while she is in it....and an x-ray that travels around your head like at the dentist...lol!!..dunno...I am never wanting to go to Children's Hospital and its scary how I know my way around so well...I think it was that 4 day stay with ACTH in Nov07.......ya think"??
I just know that the feeding team wants this..her pediatrician wants this...the nuero wants this..and I want this...Soooooo Miss Madie, you are stuck!~
We are also hoping...HOPING that we can begin to get her off her Clonopin..Clo-ba-zam...SOON..she is certainly feeling the effects of the medications these days..super lethargic..mama little snuggle bug..Seizures are few..not gone..but last huge one had her pretty out of it for a couple minutes! after the initial seizure she is blank and floppy..her eyes off to nowhere seems like an eternity..I think we all know how that feels...
Her twitches persist...sometimes I see when she sleeps or when she is just hanging out with me..not so much like the spams where the whole half of her body drops for a moment...just a hard jerk...its hard to explain...but she cries sometimes when she knows she has had a small seizure...zaps when she is being happy too...:( :(
We wait for her Blood work to come back...the Nuero faxed the paperwork to the lab and we went yesterday..IF her levels are good than we HOPE we can go down on other meds...I am ready to take the risk of getting her off her other meds...Its just TOO much...enough is enough of this drug cocktail...why do they always do that to our kids? Even when they say that we can try a new one they never take away any others....and its like "well if it WAS working than dontcha think we would be oh....NOT having seizures??"
Yesterday I thought she had a fever..she was so warm and out of it when the ol drugs kicked in..it breaks my heart that she can wake so happy and full of life and then a couple hours later depending on seizures....will be so sleepy....each day is different..some days I feel that she is not so sleepy....some days she is just wiped out...why do you have to be so hard to read madie!!! lol
We have more appointments but not till beginning of March...will be here before we know it! We will have this swallow study under our belts before the GI appointment as well...
Everyone is working so hard....its heartbreaking...everyone is so supportive and the unconditional love that everyone has for our Madie is overwhelming at times..
For now...enjoy pics and Ill blog after the Barium...fun fun fun
Going out to a great restaurant with hubby and a couple friends tomorrow..I'm excited...they have amazing food and drink..:)Its rare we go out and get dressed up :)!!
Hugs mamas
me
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