Thursday, July 28, 2011

brain farts.

Its taken me a while to fart out my thoughts. Im petty tired today. I fear saying how well things are going only to have things turn for the worse. First News is madies EEG came back pretty good. Few spikes and no multi-focals..She is still on her depakote and that dose has stayed the same..the only thing different is the DIET! Amazing Incredible Diet! She has had 3 big bad seizures this month..3. Ok Ok but when they hit her they hit her hard. Number 3 occurred just early this morning about 4am-ish.. She woke up early making it VERY well known that she wanted out of her bed. Her cries get louder and louder like she is saying "Hellllo! Hellllo! COME IN HERE!"If I get up and make the slightest noise its ALLLLll over! LOL

Her teachers and therapists have all noticed how interactive she is and how wide eyed she is as she watches things and holds things and makes her noises...I peeked in on her OT session today and she was holding onto the ropes of the big swing and laughing and laughing!!
I was at the school today helping to spruce up the garden in front that has overgrown with black eyed susan flowers and weeds...whew I was quite the sight with the shovel! Ohhh hellz yea! But anyhoo since I was there I peeked in on her OT and was just so smitten with how happy she was! Incredible!

I also asked Neurology just how long will we be on the Ketocal diet and they said that usually its 2 years but there are other kids who have been on longer..Come December at our next appointment we will discuss it further and maybe be able to lower her meds! LOWER! EEK! yes I said Lower.. I am very hesitant...but like I said only thing different is the diet..
BUT if we went off the diet would we have to go back up on the meds and see seizure return with avengence? That is my big fear.
Reducing Meds is scary but less drugs is GOOD and Id be scared but willing to take that risk..we can always put her right back on..
Shes been a little doll. So interactive with her play..loves one on one attention and bouncing and funny noises and singing..I can sing just about any song in a funny voice and she will laugh. LOL she certainly enjoys singing at school too during the morning circle time.
Oh Sweet Girl. One Day at a time.
I guess you could say Im hangin in there. I worry allll the time about Madie and try not too think tooo far into her future. She has an amazing ammount of love surrounding her and its all she needs.
We are also going to look into getting a stander for home as well thru the hospital by getting madie evaluated and referred for one maybe our friends at Anthem can pay for it. (exaggerated laugh) We can only see. :)

Well tonight we go to this local fancy restaurant for Madies Grandmas birthday dinner and then its weekend time. :) I hope everyone is well and hangin in there. I know I am. Whew.
I guess thats its for now. I bet I forgot something..till next time world.

1 comment:

Kim said...

I found your blog through a search for epilepsy blogs for kids. My 20 month old daughter just got diagnosed back in March of this year and I am just looking for some parents who can relate! Your daughter is gorgeous and I am so sorry for everything that ya'll have been through. Here is a link to the blog for my daughter, I just started it, so it is a work in progress!