Monday, November 12, 2012

Madie Magoo. Keto-Kid

Went to see Madies Nutritionist about her Keto Diet today. THREE WHOLE hours(driving and appointment time) Miles and I spent with each other and we did not go crazy! LOL I hate going to hartford hospital I almost always get anxious there. At same time even though you can sometimes cut the tension with a knife it was good to see Miles for more than 8 minutes..I miss his face in my life more often.. :( I think I even got him to crack a smile a few BUT anyhoooooo All went well. We had madie weighed and measured and her labs came back good she is getting good nutrition and all her organs are working just fine. :) She is however NOT getting enough calories...her weight remains off the charts at about 30 pounds er so and that has not changed in almost a year!! Worries me ALOT. SO Nutritionist Beth will come up with a new mix of feedings and maybe we can bring in small meals or smaller bottles into the mix any way we can. We will also go in for another (last one was WAY long ago) barium swallow study to check out exactly how madie does handle solids when she eats... Food has been a long battle with this kid. We talk about it and well...we were not the best at pushing food on her.. Also it will be EEG time come summer but we have alot of time before that. Madie is SIX now and I cannot say how tired I am of bottles and bottles and bottles...ugh. BUT its what she eats and she eats em good! Ketocal is part of life now. Oh that lovely metallic smell it leaves when you wipe it off the counter...and the thick clumps that are in the cans sometimes that don't dissolve..YUM. But its her nutrition and she eats it! BUT not enough of it. :/ So that is kinda the plan now. MORE calories for my girl! SO I wait to hear back with the new game plan errr...mean plan and we get the ball rollin! She still has 2-3 giant seizures per month and the only pattern I saw was that she would have the first one on the 5th or 6th of each month! This month she somehow dodged both I still hold my breath and hope that next month she doesn't get slammed. She has been battling some sickies too...poor kiddo had bad congestion and fever and slept all day sunday :( slowly getting back to herself but she is sure sleepy. So I guess that is it for now.I hope everyone is well...I will try to blog more often now that I finally have computer hooked up. :) Me

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