We have increased her Depakote to 3ml twice a day and she is slooowly feeling better..I am happy to report the slow tapering of her seizures..the last biggie I saw was Sunday...she continues to twitch sometimes and I have seen seizure while she sleeps..I feel we are at the same point again..waiting..waiting...
Her mood has been OK has her moments..and those little fingers have marks from her thumb sucking...her cheeks are looking better some days but some days I just cant get enough Vaseline or A&D cream on them! Raw Red!I am nervous beyond belief to see Genetics again...what if my madie HAS this Retts Syndrome or some other disorder that will stricken her to a wheel chair?? I just really hope the stander is helping somewhat for her strength...I will keep u all updated on that one...the apt is not till March!! I just wish some doctor had any HUNCH to what is madie's deal??? Gah! lets make me wait loooonger!! !
This picture below I had just cutt her bangs....ohhhh how I should stop snipping! LOL
She did suuuper with her OT today...Miss Tara brought Madie her Noisy Box...a plexy glass top with small holes and hard plastic sides you are supposed to string beads or toys thru the holes so she can lay inside and make amplified noises and reach for crinkle paper and beads etc etc...SHE LOVED IT!! making noise and laughing and holding the crinkle paper! I was awed! She also ate some sweet corn and nanas for her therapist....we were instructed by the mighty feeding team to freeze food in cubes...well she hated those and they were too cold for her...lol the corn had some texture to it and I was nervous but she enjoyed her Beechnut Sweetcorn....YUM! SO BIG !! We are also keeping a diary of how many ounces she eats each day...some days are bad...I can only get 17 oz down!! I am giving it time...with her Decreased Zonegran I am hoping that will improve...crossing fingers.....I have pics of the Noisy Box I will post next blog :)
I guess not much else to report....SO FAR SO GOOD WITH HER MEDS!!! Now when she walks i cant say! Her P.T was talking already about "adaptive strollers" for school.....School?? Oh gosh...and you mean "wheel chair??" More prayers for madie please! gah! and school? cant fathom!!
How she grabs those feet and squeals!
How she grabs those feet and squeals!
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