Sunday, February 24, 2013

genetics appointment

Well Friday we went and  saw the genetics doctor down at Riley's and they was very informative. Also very nice considering we was half an hour late because of the snow and ice we ran into heading down. The doctor said that while nothing stands out they are rechecking all her chromosomes because i guess they can detect things that other places cant. they also are going to rule out Rhett syndrome since she does have the autism and she has seizures. they said she would have a mild case of it if she did have it but they are pretty sure she doesn't. they are also checking for 3 specific genes that can cause developmental delays and seizures. they said that since Lexi is pretty healthy that its very hard to pin point anything by just looking at her. the geneticist said that we can continue to look for disorders if they don't find anything and that its my choice when we stop. overall i found them very helpful and hope they figure out what is going on with her. it may not change anything but it would be nice to know whats causing everything. Also on Friday we went to the children's museum which pretty much was a bust because between the lights and the noise it sent her into sensory overload and she cried and complained the whole time. I'v never seen her react to lights before so that was kind of strange in itself

Tuesday, February 19, 2013

happy 5th birthday

today at 4:20pm lexi officially turned 5 yrs old. hard to believe she is now 5 years old. she has overcame so much and continues to overcome alot.

Monday, February 18, 2013

results from the video eeg

we finally got the results of the video eeg that was done in january. the neurologist said that her eeg is abnormal which means her brain was sparking alot. so in other words she either was having seizures during the eeg or her brain has the tendency to have seizure activity. so either way we need to continue medicine and we go back in 3 months for a follow up. they also ran some blood work to check her kepra levels and check her electrolites to see how they are. im just glad that we finally have answers and that i wasnt just thinking i saw a seizure when i actually did. also im glad that i did go ahead and get the g tube put in because her doctor even said that shes never seen a child not take medicine but when the nurses who are experienced in giving meds cant then something has to be done. i guess it was the doctors first time ever having a g tube placed because of failure to take meds but what ever works to keep seizures at bay.

Saturday, February 9, 2013

update and moving

so lexi is still on pain meds every few hours. shes in major pain still and its kinda worrying me. i would think that by now it would stop hurting or at least lessen the pain. she is doing really well though not messing with it and letting me give her meds through the g tube. which is now a relief to know she is getting her meds everyday. on to other news i have decided to rent my moms house. so as soon as she gets moved in with her boyfriend and moves her stuff out i will be able to move into her house. im excited because its a 3 bedroom house and has a big back yard for lexi to play.

Monday, February 4, 2013

g tube surgery

lexi had her g tube placed today. it went all good until we got into her room and then the nurse did something to her iv and it squirted blood everywhere. so then we had to go to the treatment room and fix her iv. she then got into her room and she cried for a good 2 hours before the doctor on call got her some pain meds. let me tell you i have never seen lexi in so much pain until today. i definetly was not prepared for the pain. the nurse also thinks she had some kind of reaction to the anestesthia as well. we had a roommate but he got to go home which from the sounds of it was good since they had been here for 6 days. after a nap she is now happy. we are now just waiting until the doctor tells us that it is safe for her to eat and just hang out until tomorrow