Madie's Therapist said yesterday that she had a sparkle in her eyes like she was just so alert and happy go lucky yesterday... No seizure till almost 5pm... Although today she had her first of the day at 8am...hopefully that is the end of them today!!
Her mood this Am was LOUD..and happy(at 615am)...I had her in full blown laughing while I bounced her around on my knees..bearing her weight on her feet as she went uuuup and Dowwwwn..it was the cutest! I want to bottle those moments...when her 8am seizure came I was just compleatly down off my high and just layed her back in bed... she was up an hour later...feeling OK...I took her to Target and we bought her some Squash and some mixted grain cereal..squash and nanas seem to be the hits now...although bottle is stiiiil the clear winner...
At the Nuero apointment at the end of the month we will be refered to a nutritionist for Madie to help us get her eating more and getting more nutrition...they are concerned that she has not gained much weight...."she's skinny!!" God, I wish I had that problem in my hips and bum!!
O have been NO JOKE...asking them about madies nutrition for MONTHS!!!
OUR sugestions are NEVER right...... you wait a few more months and then the doc takes credit.. "Oh...maybe we need to get her off Formula"
YA THINK!??
Sooo I am anxious to see what they have to say...the usual "keep medictaion going" or maybe something new...I heard talk of the Keto diet...which I dont have much faith in...I see it more of a pain than anything...a day in the hospital depriving her of food....shoveling butter and cream down her hatch...while she screams and gags...."I want my nanas!!"......keto formula!....ugh...
I feel what have I got to loose...but I also feel it will go on the list of things we have tried...
Her seizures are few...some not as strong as others...when they are strong they are pretty scary...her eyes are all rolly and her body just ends with exhaustion...and a long nap.. sometimes I see small ones as she sleeps like a small wave of electricity is going thru her... in slow motion(kinda is huh?)...quick stiffenings and google eyes that are enough to jossle her awake and she goes right back to sleep.....
I am determined to get some on film...I have an old school camera that is only functioning when I have it plugged into the wall and its by todays standards like 3 times bigger than the usual ones..and its maybe 4 years old.....lol.
OH OH
Has anyone experienced Sleeplesness on the Zonegran? I sware I have not been able to get madie to bed till 10....11...on a good day 9.... I Am beat!! Ya think maybe she is just feeling better because its not her norm....lol...juuuust askin...maybe this drug is sloooowly making her feel better if anything...she is always so sleepy...and as much as I welcome this alertness I cant do it at 11 at night!! and get up at 6!! oh baby girl!!
Well Like I say...bottle the moments...I think I am just always so afraid I will only see her do some things once! then ZAP ZAP comes a seizure........
keep on truckin...
jamie
Anyhoo....tonight we go to my inlaws house for some diner and my hubbys Brother (Madie's Uncle Pete) is home for a long weekend from Colorado. He is smitten with her and has not seen her since I think...Christmas...geeze!
1 comment:
I dont recall the side effects of the Zonegran with Cami. That was of the 1st ones we tried. But all her meds made her tired. ANd you know all the problems she has with her sleeping....it doesnt exsist! Its a fight to get her to sleep and to stay asleep. After her sleep study test she was said to wake 21-22 times per hour....NO sleep is the word for me...my hubby sleeps through it all! Have they ever suggested melatonin for her its a natural sleep aid that you can get over the counter. Just a thought.
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