i think i finally got all lexi's medicine changed to pill form and wow its so much easier to get her to take her meds with them being in pill form. although i have to go back to cvs to get 2 more of her prescriptions because her doctor didn't tell me she was switching her last 2 meds to pills until last night at 8. i think just this week iv been to cvs now 3 times and probably a 4th time if they dont refill her one prescription today. im proud of her though for being able to take her meds like a big girl now. one thing that is very concerning is her loose stools. it seems like she goes alot here lately. her doctor said to move her medicine to once a day instead of twice a day but that worries me because shes been sleeping better now since taking the med twice a day. i posted a pic of the amount of meds she now takes. minus the one med we are waiting for a refill, her melitonin she takes at night and her daily vitamin she takes.
Monday, October 22, 2012
we went to rileys on friday and saw her endocrine doctor. first of all i have to say he is a really nice doctor and we are lucky to be able to see him. he actually apologized for not being able to see her when lexi was admitted in april. how many doctors apologize because they are not on call. not many around here. everything is going good shes actually growing now which is a good thing because in april when she was admitted she actually was only in the 10 percentile and now she has caught back up so hes not worried anymore. also when i gave him the test results from the testing the doctor up here did he wasn't to happy because he said the doctor up here did un neccessary testing on lexi and next time they want to do any endocrine testing he wants to be called first. he said he was gonna do some blood work but since they did unneccesary blood work that he wont put lexi through that until june when we go back. so thats a good thing now we dont have to go back down until january when we have an mri.
Sunday, October 14, 2012
since friday night lexi has started sleeping mostly through the night. i say mostly because last night she woke up crying at 3 but i was able to give her a cup of milk and she went on to sleep until almost 8. so is it a fluke or is the medicine actually helping. we are really not sure but ill take what i can get. the good thing about this med she is on is it gives her another medicine to control seizures plus help with the central sleep apnea. i'm in the process of getting most of her meds switched over to pill form because it seems lexi likes taking pills rather than take it in liquid form. i let lexis dad come over and visit with her. it was the first time he has ever told lexi he loved her and gave her a kiss. so sweet for once. i guess the lady hes in a relationship has done him good lol.
Thursday, October 11, 2012
so yesterday we went to the developmental doctor. we ended up spending over 2 hours there and really it was stressful. the doctor came in and asked me to draw up lexi's medicine and then proceeded to hold lexi down and give her her medicine. the doctor said i must give her her medicine that way because there is no other option. then i asked the doctor what about her sleeping issue and the doctor said she could sedate the crap out of her but with her central sleep apnea that would be very bad to do. so they put her on acetazolamide which is suppose to help her blood flow in her brain or something like that. she has to take it once a day for a week and then move up to twice a day. i asked about her getting into stuff when she wakes up so they said for her safety i need to shut her door and put a child lock on it so she can't open the door until i wake up. she woke up at 430 and stayed in her room until i got up so i guess it will work for now. i guess it was a good appointment and i will be trying some of the stuff that they mentioned
Monday, October 8, 2012
ok so the sleep i most definetly need. but the nerve pills i probably could go for as well lol. lexi is still getting up at 3 every single morning no matter how late i put her to bed. seriously shes like the fricken energizer bunny she goes goes and goes some more. honestly i dont know how she does it. and once shes up she gets into every single thing. i mean if she got up and watched cartoons that would be somewhat ok but no she has to get into stuff she should not be getting into. and her attitude is worse than a teenager. she screams about everything. i need a vacation for real no joke