Tuesday, August 13, 2013

new update

medical update then the rest. first on thursday we went and had an echo done. dont think we will find any surprises there just a check because it was one thing she hasn't had checked. friday we went and saw her endocrine dr and her geneticist. endocrine dr said she hasn't grown/gained weight in 10 months so hes checking her thyroid and checking for celiac disease since she has a gluten allergy. genetics was a waste of time except we did get a prescription for a special needs carseat which im excited about because she will no longer be able to get out of the carseat like she can now. little hoo diny figured out how to get out when shes mad so now just gotta wait until insurance approves this new carseat. yesterday we went and saw pulm, gi and developmental peds. pulm put her on singular a new rescue inhaler and ordered her to be put on a c pap at night. when she had her sleep study done it showed she has high co2 numbers so we need to get that fixed. he also got a x ray of her throat because i guess tonsils can grown back and he wants to make sure hers didnt. gi dr started her on zantac to see if that will help with her stomach acids and the fact that her g tube constintly leaks. so far it seems to have helped some. he also is putting a prescrip through the home health to get us pediasure or something close to it so i can make sure shes getting enough calories in her. he said since she wont eat and has never really been a big eater we really dont have to fight since we have the g tube. makes me feel better we are on the same page. maybe she will actually start gaining some weight now. developmental ped just basically went over the other appointments and said she would see us back in 3 months. we also started a new seizure med vimpat to hopefully stop the seizures. i know that if u dont control the seizures with 1 med then the likely hood of getting control of them is very slim. she did say that if it came between the ketogenic diet and the vns she would go with the ketogenic diet do to it being less invasive. im just hoping the vimpat works for her. we meet her new neurologist on tuesday and i hope shes really good. not saying anything bad about her neurologist now but i think we need one closer to home and on the same page as me. so now onto news about lexi. she starts kindergarten the 14th. i am nervously excited for her. so stay tuned and ill have pics to upload soon i promise

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