Saturday, February 21, 2015

im behind

wow a month has passed since iv updated oops. since iv updated lexi has turned 7.  where has the time gone and how can she be 7 already. i had planned to take a cake in to the school but lil miss got a day off of school due to the extreme cold we have been dealing with. we are having a party next weekend with just some family. health wise she has been ok. 2 weeks ago she had both of her ear drums burst so she  was dealing with pain from that. we seen her neurologist and we weaned phenobarbital in the mornings to help with her anger issues and it has helped. shes only on pheno in the evening now. we also saw developmental and she finally sent a script for pull ups which is much nicer because lexi is no longer wetting through her clothes which is nice. she also tried to get her into iq testing but the only place that can do it has a yr and a half wait so for now we wait for that. finally we went down to rileys childrens hospital and went to the ketogenic diet clinic and we did blood work and today i will be submitting a 3 day food diary and once they get the blood work done they will give us a date to be admitted. once we are admitted we will learn about the diet and hopefully she will be ok with the diet changes. they said it will take at least 6 months to know if it will help her. she will be eating orally but also be fed ketocal through her g tube. we are anxious to start this diet and hopeful it will help

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