Sunday, March 31, 2013

Easter 2013 plus some

So today was a good day. I got lexi some bubbles,chalk and sandbox toys for her Easter bucket. I decided to go small because 1. Easter isn't about gifts its about Jesus rising from the grave and 2. she really doesn't need anything but stuff to do outside. We went to church and then in the afternoon we went to my moms house and ate dinner and hung out. I rode my first 4 wheeler today and that was fun. She did start to freak out with everyone there but after a while she was OK being there. Its hard seeing her not being able to fully enjoy being around other kids. I did find out on Friday she is being referred to the ENT so her appointment for that is April 15th. I'm just ready to get this done and over with. I just hope she doesn't suffer any hearing loss due to her ear drums bursting twice. Good news is her g tube is starting to look better so i'm thinking on Thursday i'll be able to schedule her endoscopy to switch her peg tube to the mic-key button. I'll be happy to not have the extension constantly  hooked up like it is with the peg tube. Spring is almost here. We have had some beautiful days in the 50's but tomorrow and tuesday it looks like its only suppose to be 36 which sucks. I'm ready for the windows to be open and the sun to be shining again. Hope everyone had a wonderful Easter.





Thursday, March 28, 2013

update

so for the past week lexi's g tube has been infected or at least the site around the g tube has been. when we went to the GI dr last week he told me to put a&d ointment and triple antibiotic cream on it. over the weekend it has steadily gotten worse. well i was finally able to get her into the GI dr today and he took one look at her g tube and say its really infected now even with the ointments so he put her on an antibiotic for a week. he also said since we are having issues with this tube then we should switch her to a mic-key button so next week when we go back to make sure its finally healing we will be setting up the appointment to get it switched. i think it will be easier when we get the mic-key button or at least i hope so.

Tuesday, March 26, 2013

lexi's story of epilepsy

Lexi was lucky to not have seizures up until the summer of 2011. Why she all of a sudden developed seizures we have no clue. in september of 2011 she was cranky the whole day. so i ended up putting her to bed and i was laying down playing on the computer when all of a sudden i heard her make a choking noise and i got up turned on the light and there on the floor she was having a seizure. it scared me shitless excuse my french. i called the ambulance and we went to the hospital only to be released shortly after from what they called a febril seizure. i brushed it off came home and slept on the floor with her. the whole rest of the night she constintly had seizures one after the other. i made an appointment with her pediatrician and we went in. the doctor tried to give her some medicine to get her fever down and when that didnt work we undressed her and put cool rags on her. she started seizing shortly after the dr walked out the door. the dr ran back in and said we needed to be admitted that she was calling for an ambulance. they never did figure out what her fever was from that time. we stayed at the hospital for one night and got sent home. fast forward two weeks later. me lexi my friend and her father went to the park so lexi could spend some time with her dad. we had just started walking back towards the car when i heard a loud plunk. i looked back and there was lexi seizing. i grabbed her and yelled for someone to call 911. i will never forget all the children there at the park looking scared.anyways during that hospital visit they decided to try to do a cat scan but that didnt work so they put her on kepra and scheduled her for an mri a couple days later. during her first mri they found a cyst on her brain which they don't know what it is. since the inital seizures shes had more. shes now on 3.5ml of kepra 2 times a day. because of her not wanting to take her meds she has had a g tube place and since then her seizures have been under control. i will never ever forget the moment i had to watch my daughter seize.here she is today sporting purple to help raise awareness

Friday, March 22, 2013

go purple on march 26th

on march 26th its purple day. which means wear purple to help raise awareness for kids battleing epilepsy. up until september 2011 i really didn't know what epilepsy was. i learned very quickly what a gran mal seizure looks like and how frightening it is to watch your child have one. i will be sharing the whole story behind lexi's epilepsy diagnosis on tuesday but for now i would just like for everyone to wear purple on tuesday and if you could post a picture on lexi's facebook page so she can see how many people are helping raise awareness for her and everyone else. her facebook page is https://www.facebook.com/Advocatingforlexi  

Wednesday, March 20, 2013

ear infection/ sleepy

So on Saturday Lexi started to complain about her ear hurting. So we gave her Tylenol and she slept a lot. she woke up on Sunday morning doing OK but by afternoon she was sleeping once again and complaining of her ear hurting. so Monday i took her in to the doctor and she has another busted ear drum. mind you she had a busted ear drum in January as well. so my question is how does she get 2 really bad ear infections that bust her ear drum I just don't understand. last night she slept from 6:50 to 5:30 this morning. I'm glad shes getting sleep but I think its her body's reaction to sleep when ever shes in pain or don't feel good. Today we have an appointment with her gi to hopefully schedule the switch from the peg tube to a mic-key button or mini button. Hopefully it will be soon and hopefully we will get in with an  ent soon as well to schedule getting tubes in. I'm just praying with 2 busted ear drums within 3 months of each other that she doesn't have any hearing loss. I know its rare but my father lost his hearing due to a ear infection so now I'm causious when it happens with lexi.

Friday, March 15, 2013

iep meeting for kindergarten

The meeting for the iep for kindergarten went Ok I guess. I honestly don't believe they have dealt with special needs kids like Lexi before. Her kindergarten teacher when i asked if she knows sign language she laughed and said thats not something shes gonna learn. How do you expect to teach a child with communication issues and not know how to know what she is saying. Then i asked about how many kids are gonna be in a class and what happens if lexi cant handle it and the teacher and the principal says well kids in kindergarten are loud so guess she will have to deal with it.seriously i don't think they truely understand sensory processing disorder. they are willing to let Lexi go somewhere and rest if she needs to. so that's a good thing. To top it off i asked about an aid for lexi and the principal said there will be someone in the class but not someone who is working one on one with her. that makes me worry because i was hoping for a para who would work with lexi one on one and be able to help her when needed. i guess she could suprise me and do really good in school but still shes so far behind and needs extra help that i honestly don't believe shes gonna get at the school shes assigned to go to.

Tuesday, March 12, 2013

some results from the geneticist

Well yesterday i got the results from the comparative genomic hybridrization and its normal. Now what does that mean it means that her chromosomes are normal. Now while that is good news I still am hoping they find something on the other tests they have done. Don't get me wrong I don't want something wrong with Lexi but since there's already so much going on with her i would like to have a name or syndrome so that way when people ask whats going on i can be like she has this and not name off everything. I mean having a name probably wont help but still it would be nice to not be undiagnosed. She is doing better with the snotty nose and the cough. I'm thinking the doctor was correct and it is allergies. Now that just means the doctor will probably want to do allergy testing to see what she is allergic too. Another new development is that she's not wanting to eat much now. I don't know if its a sensory thing or if she just doesn't want to but i'v been having to put pediasure in her tube at night so she can get extra calories. People say kids wont starve themselves but when she has been 35lbs for quit some time its time to get her some extra calories.

Sunday, March 10, 2013

allergies in the winter?

so i took lexi to the doctor on friday since shes still coughing alot and has a snotty nose. well the doctor came in and said it sounds like allergies. its possible it could be allergies im just hoping she gets relief soon. the doc put her on zrytec and it does seem to help some so thats a plus. the doc also said if shes not better in 3 months then she will send her for allergy testing. i honestly don't want that but i will do what ever helps her. still don't have an appointment with a ent hoping they will schedule that appointment tomorrow so that we can be seen soon and have tubes placed. on to other news we will be having the case conference soon to get her ready for kindergarten. but from the sounds of it the teacher don't think she needs the special help and she will do just fine. my fear is that shes already regressing in speech and other areas of development that she does need more help. shes not even any where near potty trained. its not from lack of trying either because lord knows we have tried so many times to get her potty trained. she just seems to lose interest or regresses to where she doesnt want to go on the potty anymore. well have a great week

Saturday, March 2, 2013

sickness

Sunday Lexi got sick and i couldn't get her fever to break for nothing. she had it from friday night til monday so i took her into the er where they gave her some cough medicine to help her stop coughing so much and they also did a x ray which showed nothing. The doctor looked in her ear said it was infected so he gave her an antibiotic as well. well two days later she was still coughing very bad plus her g tube look infected so i took her back into the er and all they did was change her antibiotic to something stronger. So for now we are just waiting for her to get better hopefully soon. Yesterday we had therapy and all her therapists said she is regressing. They aren't sure if it's due to the sickness or what but shes very clumsy, very tired/pale and her speech is not as well as it had been. Hopefully it's just the sickness making everything worse but with her you never know. We also had her yearly hearing test and she is hearing worse than she was last year but that's probably because they found out her ears are full of fluid. So now sometime soon we will most likely be looking at getting tubes placed. It kinda upsets me because it seems like here lately she has had to go through a lot but at the same time i'm glad its just fluid in her ears and not permanent hearing loss. So thats a good thing.