WEEELLLL Life has been a whirlwind of emotions for me this past week and with Madie being sick and working and ugh....the rest is just history...BUT anyhoooo
After her yucky seizure day on Tuesday I called her Nuero on Wednesday and told them that she was miserable and she slept allll day and that she had like 2 big yucky seizures that knocked her out and that I still see them when she is napping..small ones that wake her for a moment but she goes right back to sleep.. you know how it is...every day is differnt...good days that you think our little ones are getting better and then bad days that strike and you feel like that good day was just erased from their minds...with the little demons we call seizures...
She is currently on 150mg of Zonegran at night...and 2- half tabs of 0.5mg of Clonopin..one half in the AM and one at night...(does that make sense?)
So the nurse asked me if we have had any diagnostic tests done on madie and was asking me all kinds of things...Is she walking yet? Is she crawling? What is her diet? is is gaining weight? Well she is not walking and with that answer alone she was gung ho on figuring out what tests we can do...WHY she is so delayed... she also recomended a trip back to Genetics...maybe there is a genetic disorder going on...? We had been to genetics one time back in...Nov?...and we were testinig her for Fragile X syndrome...a chromosomal defect that mostly effects boys..damaging their X and pretty much causing mental retardation...I have a brother (a loooooonger story) who HAS fragile X...well I wont go into that disorder you can look it up on Google if you so desire...but madie was conpleatkly free of the disorder...NOT even a carrier...and usually its us women who carry it... the men get it...
Now when they tested ME they told me I had "full mutaion" which pretty much says I have a 50/50 of passing this on to any child!!
But we ruled it out for madie!! Nope.,......debiliating seizures instead...
BUT that frustration aside we also talked about her diet and she was going to make a note for the doc to get us hooked up (ghetto style) with a Feeding specialist....aka a Nutritionist to help us with that.... she was shocked that she was 2 and still on bottles....
WELL YA KNOW I NEVER DID THID BEFORE>.. kid can starve or she can eat her bottle...(that is what I said anyhoo) See "madie and her potion":A love story.......lol.
She also mentioned the ol Keto Diet...oh gosh...that is a hard one! Sometimes...alllways a "sometimes" childrean who do not respond to meds WILL respond to this nasty fat infested diet! She says if we do it we have to check madie in the hospital for a day or two for the "fasting" to get alll her other food out of her system before we begin...yeah yeah I read Allllll there is to know about this diet and the beginning is the hardest.... BUT she wont eat FOOD!
"oh there is a formula you can get" she tells me...
BARF...can u imagine what that stuff looks like?? I imagine like when you leave your old bowl of milk from your cereal on an end table and forget about it...I mean I have nevver done that before...lol
She made us an apointment for Oct 29th so we can make a game plan..said to call them in a few days on any ill effects the Zonegran increase may have if she gets effects...and just to hang in there...we made the apointment then cause we have a Pediatrican 2 year check up with our new developmental pedi!! they wanted to get her report as well sooooo "just hang in there" she tells me..(see statement on "Patience" in next para..)...gah.
So that is where we are AT folks....mama is burned out, stressed, tired, feeling at times I have let myslef go...feeling that I need to get back into those power walks and my low fat diet and pretty much "get my shit together" to put it in french... I absolutly hate the fear of the unknown...I hate not knowing what will work and WHEN anything will work...I hate having patience when it comes to something like madie's future!!
She is a happy little clam this Am..still a little stuffy(Madie's Auntie Mary took credit for giving madie her cold..lol) but in decient spirts..making monster noises and raspberries...gotta go get her out of her bed now time for tummy farts!!
Toooday is pricess day..I am headed out to get 4 inches off my looong hair and some yummy highlights!! woo hoo!!
comming Madison! (I got a squaker on my hands now)