Saturday, November 23, 2013

more appointments

so monday i went and had an mri done on my ankle because it's been hurting to even walk for almost a month. well the x ray showed no fractures just a sprain or so we thought. went to the mri found out i do have a stress fracture so now im in a walking boot for 3-4 weeks. great just what i wanted lol. then on tuesday we went and saw lexis pulmonologist/sleep specialist. we decided to start her on a new medicine called razerm or something like that for sleep. we are also doing a bronch on december 10th to see if there is a reason for her sleep apnea since shes had her tonsils and adnoids out. we also saw her developmental ped who started her on folic acid.we decided to get a pulse ox to see if her oxygen drops at anytime during her sleep. we also plan on trying a few other things if needed. we  was suppose to see gi but for some reason her appointment was canceled and never told me about it. so we will see him on the 2nd after we see neurology again. so far keppra wean is going good no major side effects

Thursday, November 14, 2013

med changes

i feel like all we ever do is go to dr appointments. today we went and saw lexis neurologist. shes awesome and i love her. we decided to up trileptal to 3ml in the morning and 4ml in the evening. she wasnt going to start weaning keppra yet but since i expressed the fact that lexi is still having bad anger issues she decided it was safe to decrease keppra to 4ml in the morning and keeping the evening dose the same. im nervous to make these changes but im hoping it will help her. the neurologist did say that focal seizures are very hard to control so we will keep keeping on

Tuesday, November 5, 2013

what im thankful for

since i'm not into the whole lets write what we are thankful for everyday i figure i would make it one blog post. first of all im thankful for the wonderful maker of this earth. God is truely amazing and im glad to follow him and raise my daughter to know him. 2nd of all im thankful for my mom. without my mom i wouldnt be the woman i am today. she is my best friend and she is there when i need her. she also is the one who rents her house to me and watches my daughter after school. im thankful i have a wonderful daughter who is amazing despite all her challenges. im thankful for her doctors her therapist her school and bus driver they are part of the group we have. they keep her going and me going. im thankful for my friends. my friends seem to care much more than some of my family and im truely thankful for that. im thankful for the friends who have came with me to appointments have waited with me during hard and trying times with lexi and also have been there to just listen. despite everything if it wasnt for god we all wouldnt be here so i believe he is the one im most thankful for.

Monday, November 4, 2013

special needs and people who dont understand

i think i have some jealousy of people who have kids that dont have special needs. i was talking to my friend and she said her son got to go with his aunt and uncle for the weekend. it got me thinking that if i ever wanted lexi to go anywhere with anyone i would have to teach them how to give her meds through the g tube, i would have to teach them about her seizures and the types she has. i would also have to make sure they knew to give her her meds at the same time because if your late or miss a dose she can have more seizures. dont get me wrong she is a blessing but its just the thought of having someone keep her overnight that is exhausting. i guess thats why i keep her close to me and with me. i dont get the people who complain about their kids on facebook or go out and party every weekend. its like if you didnt want to have a kid why would you,

Saturday, November 2, 2013

loving life

so since the last time i blogged we went and saw her neurologist. she has spikes in her frontal lobe that then moves to being generlized. so that means she still has seizures. so because of the fact that we upped her keppra and her aggressive behaviors we have decided to start trileptal at 2ml. then on the 14th we will go back to the neurologist and start to wean keppra. to wean a med makes me nervous. im nervous that if we start weaning shes either going to have bad withdrawls or shes going to have an increase in seizures. but i guess we will deal with that in a couple weeks. as for parent teacher confrences shes doing good in school. we got an i pad for her to use at school with the proloquo app on it. we are hoping she can start to learn how to use it to communicate better with her peers and the teacher. i know the teacher gets frustrated because she doesnt understand what lexi wants or is trying to say. i can relate to that but with me i'v became accustomed to learning her ques to what shes trying to say. other than that we went trick or treating on thursday which went good. she walked the whole way and only complained about wanting to be carried towards the end. which is normal for her but im glad she pushed herself to do it. shes been sleeping more especially at night which is awesome but im waiting for the ball to drop. i know she wont continue to do it unless she was having seizures at night and since we started a 3rd med it has helped her sleep. guess we wont know for a while if it was that or if shes in her phase of sleeping again. ill try to blog more but its hard to remember to blog.