Wednesday, August 18, 2010

la la la la Madies World..

Howdy Folks in the above photo Madie is playing with her Jiggler Toy...this toy was given to us by her Birth to Three was one of the many ways we encourage her to use her hands and chew and hold...she loves this thing. We do not know how many batteries we have gone thru! It can run about 20 bucks online and come in differnet annimals.
Well today I am hangin with is on break and Madie is on break. she is such a booger! Seizures have been really good for reasons unknown..this whole Seizure disorder thing has allllways been so unpredictatble. I have read alot about Epilepsy and about Infantile Spasms and lennox gaustat syndrome (which docs say she has) and well...I always felt that if we could just get Madie seizure free she would take off in her development. OOh how I wish this would happen. Oh how I wish my baby girl would pull herself up to a stand and show me how big girl she is!
Epilespy is more than just having seizures for some. My father was Epileptic and lived a normal life and was a pretty smart guy..doctors have told me that seizures are not genetic. (dunno)
Its been good days with Madie. she is such a booger. Love Love love when she takes a nice nap from being sleepy and not from a bad seizure. (although maybe meds can have a part)
This mama is tired. she is tired of seizures and tired of worry and tired of anxiety feeling trapped in my own anxiety and fears of the unknown.
I am always looking over my shoulder at madie.Looking out for seizures and looking out that she is not getting herself into what we call "the fall zone" basically any area off the carpet near the wood floors or hard object as a table or chair..LOL and its tricky!! She is quite the little roller and wiggles on her blanket..there is just not enough room! It would be amazing to finish our large basement and have large carpeted safe zone.. to make room for the TV and madies play things. lots of rooolllin room! hee hee. She gets on those little knees and pushes and pushes wioth her little hiney in the air..its too funny!..I think she wants to crawl!! never know what Madie is trying to do..I always say she will do things when she is ready. when MADie wants to. not when I try to ballance her on her hands and knees and push her. she will for sure cry!
A sure sigh of relif when Miles gets home from work and I can turn my back for awhile. lol
Soooo back to my beginning...well Seizures have just been good. Unsure. Kinda hesitant to even mention this. I have been SUPER crazy about getting Madie her medicine at the SAME times each day...between 730 and 8 no matter what time she has eaten...meds come at those times. We dont get up till about 730am and by the time mama has gotten all her yums yums together its about thats our reason on that. lol. We haev actually brought her meds to resturants just to keep the times right..yup its craazy...haha
Maybe since I have been good with her meds that has helped...whooo knows. But I wont complain.
She is still her little meltdown self..but alot of times there is a wanting to be carried or hungry or sleepy..but its just figuring them out that is the hard part!
Things are just going...Im tired. but I keep on truckin. I tend to stay up too late cause usually nightime is MY time to just take a load some travel channel shows or some mindless programing and just "zone".
I guess that is all for now.
OH OH still workin on getting madie into this dang keto diet and getting the cost of Keto Cal covered by any program that will do so...*sigh* dunno....and GAH>

Hope everyone has a good weekend. Im still recovering from last weekend B-day weekend...Mexican Food hangovers can be a biotch.

1 comment:

Dawn said...

Jamie, I know exactly how you feel. Today is Taylor's 21st birthday and I'm still constantly looking over my shoulder at her because of her seizures.

She also has Lennox-Gastaut. We've tried all drugs and all the surgeries available to us, but Taylor still seizes anywhere from 50 - 100+ seizures a day.

The one thing that keeps my going is her smiling face & determination to live her life. She is non-verbal but can say everything that's important in the world with a big hug & a slobbery kiss.

I would love to tell you that it gets better as she gets older, but in my case, that doesn't hold true.

However, I've known a couple of kids with L-G that have gotten better with age.

Maybe your Maddie will be one of those. She is a gorgeous little girl. You & your family are in my thoughts.