Its that time again! Madies Teacher came to our house yesterday to give us a run down of what we will be discussing at her PPT meeting this coming Tuesday..
First and Foremost it has been reported that her seizures are almost non existent at school! Making her days much brighter and happier. We can call Madies teacher Mrs L. Mrs L. said that the main goal is to just keep Madie happy in a happy school setting. She says that madies mood is not consistent and sometimes they do let her take her 10 minute naps in her stroller..She is certainly getting used to the new afternoon hours slow and steady. Mrs L told us she has had kids who literally sleep the whole day away so she is glad that madie only SO FAR has been requiring a quick catnap here and there. They inculde her in all the activites the other kids are in weathor she is in her stroller or sitting on floor or at a chair at the little table..(they have a chair with straps on it for her) Mrs L just said they will cater to her..and they even have a quiet area in the classroom with books and beanbag chairs and comfy mats to sit on that they can take her too when things get too overwhelming. Gosh we are so blessed.
Madie has also been doing really well with cause and effect toys and Ipad Apps.HOW cool is that they have an Ipad there! Madie continues to love her old favorites of vibrating and light up toys and her vibra mat they sit her on they say just calms her and makes her happy. She is also doing well with alertness and turning to sounds of her little peers or the sounds of her teachers voices..looks around and takes in her surroundings. She continues to do well in swings and her OT is always a hit. They said they put her in a blanket and used it like a hammock and swung her in it she loved it. lol
Mrs L also said that madie hit a toy with her foot by accident and just perked up like wondering where that came from..lol If ya know Madie her feet are like her extra set of hands. she is like a monkey. Yes she does have her share of monkey jammies and money hats..lol
And the Whistles! Her favorite noise to make I sware she will whistle back..lol!! love love it.
Now PT is another ball of wax! Sometimes are good and sometimes she will not have it. When ya make the kiddo work! lol They have been using her stander every day at school and she can make it sometimes up to 40 minutes in it. They have recently also tried a walker and have gotten her to hold onto it but have yet to be successful in that one. I feel like ya gotta get the kid to be able to balance her stand before we talk taking steps!
She continues to be very behind her peers in many many ways..I think a big goal is to try to establish a way she can tell us what she wants...or use a toy or communication device to have her hear the words or sounds and see her response..which has been positive as far as her toys and Ipad apps go. :)
I cannot say enough about the Ketogenic Diet. I urge anyone to at least TRY it. It has brought our little Madie sparkle and whistles and eye contact and made her even more demanding than ever! lol.. Oh and to keep her happy. ;)
Seizures have been 3 large ones a month...it has been that trend the past few months...I still hold my breath for 3rd one this month that has not hit her yet..Oh gosh I hope I did not jinks anything :(
Still alot of what ifs and unknowns for Miss Madie..I dream of her being physically able but dont know about that. Does she perhaps have a condition that will prevent her from ever walking? I can only say that she has amazing people working with her 4 days a week and the generosity of the school has been amazing!! We got madie up and going in what they call the Backpack Program that gives madie weekly goodie bags of usefull things...diapers,wipes, shampoo, bottle nipple re-fills, lotions...all kinda of stuff! saves us so much money!! specially since each month we have to muster up nearly 700 dollars for her ketocal since we have to send in claim forms to insurance instead of paying a co-pay each time..sigh..
OTHER than that...lol all is going well..just one day at a time. My Back has really been killing me I think this kiddo is going thru a sudden weight gain that is taking its toll on me. I feel so old! I should certainly be the spokesperson for sagging lids and dark circles. uhhhhhhh!
Today Hubster is home from a week long of travel and a sigh of relief goes thru me. He will be back traveling again half the week next week then hopefully no more travels for awhile. Unless he takes me on a fabulous vacation or a crusie...LOL
Well Till Next Time.