Monday, December 31, 2012

good bye 2012

well so much has happened in 2012. lexi has had tons of doctor appointments and only 1 hospital admission which turned out nothing was wrong. we thought we would get answers to what is going on with her in february but nope we are still searching. she has made progress with her speech but she is still very delayed. she got the diagnosis of apraxia which explains alot about her trouble with speech. good things that happened is she transitioned from my room to her room and into a twin size bed. she also learned how to ride her bike and sign please thank you and help. her anger issue is still a problem but shes finally getting behavior help. another big thing is she started daycare and has done really good with it. my goals for next yr is im praying we get answers with the genetisist and for me to lose weight and get fit. so heres to a new year and a new beginning

Friday, December 28, 2012

video eeg/christmas

Christmas was ok. spent time with family and lexi ended up being in a grouchy mood so i had to deal with that.actually im still dealing with her grouchy ness and she doesn't want to sleep at night for me. i called the neurologist because she has started this rapid eye blinking here in the past couple days and they now said they are going to set up a video eeg. i honestly doubt they will get anything on the eeg because really i never know when she is going to have a seizure. and the blinking i believe its a tic that she has now developed. my guess is they will not do anything about her not taking her meds since they want her to have the video eeg. i dont understand doctors around here at all. i mean do they honestly think they are gonna keep lexi in a room for 24 hours with leds on her head. i doubt it because i know how she acts. i may sound negative but i honestly don't try to be but i know how my daughter is and i know how she will react because everytime we have gone to the hospital she acts the same way. i'll just be praying they catch something so they can help her out. i have no idea why my pics are on top instead of underneath this update but there are a few pics from christmas and her field trip she went on.

Sunday, December 23, 2012

maybe g-tube

well the nurse practitioner called me back friday afternoon and said there's really no other solution to lexi not taking her meds. I of course got frusterated and asked her how in the world is it safe for my daughter to be able to continue to keep having seizures because she wont take her meds. she said that they are not used to kids who flat out refuses meds like lexi and that the only option is to either find a new speech therapist who works with oral adversion or do something drastic like an iv or g tube. im so ready to say just do a g tube because lexi isn't overcoming her sensory issues in her mouth and plus the fact that she has horrible behavior issues it just makes sense to not fight with her any longer. im sick and tired of doctors not wanting to deal with my daughter because shes difficult. how can a doctor even do that. and its not just her neurologist or the nurse practitioner at the neurology center. its the sleep doctor who refuses to order a c pap because he doesn't want to deal with her not wearing it. how can that even be right. shouldn't she at least have the chance to get a good night sleep. she has central apnea and obstructive apnea to where she stops breathing but because shes difficult they don't want to give her the good night sleep she deserves. i just pray they do something about her meds. she needs to have her seizure meds and she needs sleep

Friday, December 21, 2012

so frusterated

Lexi refuses to take her medicine. Her speech therapist finally got her to take it but it took her over half an hour to finish it and who knows how much she got. I'm gonna try calling the neurologist in a few and hope they are open so that maybe they can figure out what to do. Shes not sleeping and her anger issues and yelling is really increasing. I'm about to just say put a tube in her so we know shes getting her medicine. I'v tried ever way imaginable to get her to take her meds and she wont because of her behavior issues and her sensory issues. I'm tired of doctors not really caring if she takes her meds or not. I mean really is it safe for her to keep having seizures because she wont take the medicine. not really but it seems like doctors just don't care any more and don't want to deal with kids.

Wednesday, December 12, 2012

christmas time

Is it just me or does it honestly not seem possible that it is almost Christmas time. I know we are already 12 days into December but honestly it doesn't seem possible that Christmas is only 13 days away. I put our tree up in the middle of November but I'm not in the mood for it. It would help if we had snow but its so mild here its not funny. We set a record for going over 265 days without snow. People think I'm crazy for wanting snow but I think if it snowed a little more it might make it seem more Christmas like. Another thing is why do people now say happy holidays it Christmas not holidays. Christmas is Jesus's birthday and he is the reason for the season. Do you have snow where you are and if so how much?

Friday, December 7, 2012

neurology appointment

so yesterday i took lexi to her neurology appointment. it only lasted 10 minutes and that was basically to say that they didnt know any other ways to get her meds into her and they would look to see if they could get her into feeding therapy or something. i just wish it wasnt a fight to get her meds into her. she needs them otherwise she will have more seizures. next week we start back with ot and then have speech afterwards and her speech therapist wants me to bring her meds to try and work with her to take her medicine. i dont understand why everything is a fight with lexi.