Friday, April 8, 2011
A Diet of certain miracles......
Madison LOVES tub tub time! Some cute shots of her in her tub a few days ago :)
Well I have been hesitating to blog only cause I feel like If I brag about the great couple weeks madie has had they will suddenly come to a screeching hault with bad seizures and bad moods and sleepiness and constipation and uhhhh what else..?
Nothing but great reports from school..giving teachers hugs and her loveys and giggles and great interactions with her therapists and it just warms my heart..Her teacher will come out with her at pickup time and just be so happy to tell me that they played and madie laughed and laughed. My Big Girl...you will get there..
This Diet...oh the blessed Ketogenic Diet. If any of you seizure parents have ready about this Diet its sometimes hard to understand.... We worked out one kink and lessened the amount of water to the same amount of Ketocal and Apple Juice and she gets alllmot the whole bottle down leaving maybe an ounce in there. Which is better than before leaving at least 3 oz and not getting enough effect from it.
This Diet....I can only watch in disbelief. Is this working?? A DIET? Food? Fatty Greasy bottles? After NINE medications?? All those terrible drugs....STEROID injections in her little 11 month old thigh...
I turn to her at each weird noise she makes wondering if its a seizure hitting her. I hold my breath each time the phone rings when she is at school hoping its not the call to come get her after a large seizure...The Friday before last was her last big seizure at home after school...and the Thursday before that was the last big seizure at school where they AGAIN called the ambulance..sigh. Soooo two "big" seizures in 3 weeks....(I think that's right)She still has small ones when she sleeps as I even saw yesterday while she was napping on her blanket downstairs..
BUT BUT wow..she has been doing good!!
I hesitate to even brag...we allll know how that goes! Then BAM BAM BAM seizure after seizure hitting them hard. Breaking our hearts into two..
I have learned thru all this to take ONE day at a time. Just One. Enjoy each good day and savor the giggles and the loveys. Hoping some day just some day that she will be able to walk and play and be more or less seizure free. Med free? Well I think she would have to have alot of clean EEG's for that to happen but like I say one day at a time. I already feel a load on my plate but I also have to get this kiddo eating FOOD...real food. maybe a meal a day...or a few bites at a time..I just have no idea how to begin. (well I think I just answered that huh? lol) Its tough right now cause its SO important for her to get the right amount of food...no messing around...which is why I have still just been doing bottles. *sigh*
NOt really much else to report..Spring is trying to show itself in CT..my flowers are slowly coming thru the ground and its getting to that time to mulch the garden..I am not very successfully trying to grow peppers and tomatoes but having lack of sunny places that last all day is tricky...lol Hoping to get some cutie spring pictures of Madie soon too..get those pigtails back!
Posted by Jamie at 6:24 PM