Thursday, October 11, 2012

new medicine

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

i need sleep and maybe nerve pills

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

Sunday, September 30, 2012


so nothing new has really happened in the two weeks. the only really major thing right now is that im waiting on her doctors nurse to call me back with a solution to having lexi take her meds. she fights like no other and then spits them out. before you ask i have tried putting it in her drinks but she takes one sip and refuses to drink any more. don't ask me how she knows but she does. i'v also tried it in her food but if i try to get her to eat then she refuses and then i end up wasting food and medicine. i even thought if i rewarded her with a treat afterward it might help but nope she still spits it out. she doesn't just spit it out for me either. she spits out the meds for anyone. drs nurses and her grandma as well. so now i really have no idea how they are going to get her to take the meds. right now she has a cold and hasn't been sleeping really well at night. she goes to bed fine but then once 3am comes around she gets up and gets into every single thing you can imagine. i had to search for my glasses cuz she hid them from me. but other than that shes gone on a field trip and is going again on friday. well have a great week and hopefully i hear something back soon from the doctor

Wednesday, September 19, 2012

school, dr appointments and referrals

lexi has been doing really well in school. she's getting back to herself this week after a very off week last week after her seizure. shes still weak on her left side but hopefully that will get better as well. we had her appointment with her developmental pediatrician and that was the fastest appointment we have had with her. we got there at 1030 and was out at 11. the doctor came and got us and said that she wanted to make this very fast and easy because she understands that we spend alot of time in doctor offices so she didn't want to make us stay longer than necessary. i told her that lexi has started having seizures again so she got the blood work from her neurologist and increased her keppra to 3 1/2 mls twice a day. then she is referring us to neurogenetics down at rileys and most likely the sleep clinic down there as well since the sleep doctor there in the office doesn't want to help figure out how to get lexi's sleep apnea under control. she also is calling her neuro surgeon since lexi did have another seizure and is now weak on the left side to see what she says and to let her know what is going on. lots have been going on but i think we now have a routine going. just hope the keppra rage stops soon cuz i honestly didnt think that increasing the med would set her off that much but it has.

Tuesday, September 18, 2012

look whos learned to ride a bike with training wheels

yay lexi finally learned how to ride a bike with training wheels. its very big news since it took her a long time to learn to ride a tricycle. i have more updates coming soon but i wanted to share this video first.

Tuesday, September 11, 2012


well of course i just had to jinx lexi and she had another seizure on sunday.we have no idea what caused it although it happened when she was sleeping. the doctor ordered a keppra level and we will most likely increase the dose to hopefully get the seizures under control again. im upset because it was almost a year free.

Friday, August 31, 2012

can we have a repeat please

so yesterday lexi had school and then speech and physical therapy. her behavior consultant met with us at the therapy center and wow wow wow. it was a totally different experience. for the first time in over a month lexi sat down at the table never screamed for me and did everything that kristin wanted her to do. she worked very hard and i am so glad. she did get upset when her behavior consultant left the room but once he went back in there she calmed back down and started working again. we believe that maybe lexi just isn't ready to be by herself with another person and thats why she is crying for me when i leave the room. we know its not a trust issue so thats good. the bad part though is because shes been screaming and not working these last few weeks shes now regressed and her speech has gotten worse. so we are hoping that once we figure out her problems and get her working hard again she will begin talking alot. she also did very well with physical therapy as well and everyone was very proud of her. i am so very proud of her for how she did yesterday because i knew she could do it.the biggest thing right now is at home she is getting into everything and misbehaving for my mom. its like shes going through the terrible 2s again. i hope it goes away though lol.