Sunday, August 18, 2013


last wednesday lexi had her first day of school. she loves it i think. i honestly don't really know because she says no big school but from what the principal said she trys to communicate with them and she plays beside the other children just not with them. i hope the school will be more open to telling me how she is doing in school. its so hard not knowing what she does all day because they dont send home notes telling me anything. i decided to hide all the treats in the house in hope that she would start eating what i feed her but that hasn't been successful. she only ate 2 pancakes and 2 hotdogs yesterday and just a peanut butter sandwhich today. i offered her spegetti for dinner and i think she just played with it and never really ate any of it. i honestly dont understand why she wont eat unless there is something wrong. maybe her stomach hurts and thats why she doesnt want to eat who knows since she cant communicate it to me. friday was a bad day overall with her. she woke up at 4 and had 3 hrs of therapy and by the 3rd hr she was just not having it. she screamed for 20 mins straight. hopefully this week will be better and hopefully we will get her c pap and pediasure. now for some pics

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