Another one....

Just wanted to let y'all know that Ashlyn had another seizure today. She was in art class and it happened right at the end of class. She must have been in the back of the room where she usually doesn't go and the teacher managed to catch her before she fell down. She did hit her head though. I called the dr and hadn't heard back yet but they did mention she could have breakthrough seizures while we're changing the meds. Hopefully that's all that was. She's feeling fine now just tired and sore. Fortunately she's been doing much better on the new medicine as far as side affects, just hope it works now!

Football

Colten had his first football game this weekend. Unfortunate Ashlyn and I missed it, but we went to fiesta Texas with Jayde for her 16th bday so we did have fun! They win the game 30-0! And Ashlyn did great on the rides at fiesta tx even thought I didn't let her go on upside down rides until the very end ( I was very paranoid about something bad happening to her and just wanted to have a good day, sooooo very thankful the day went by without an issue!!)

Heres Colten in his uniform:

Changes

Well, finally the doctor understood our concerns, especially after Ashlyn told him she would rather have the seizures than have the side affects of the meds she was on! So glad we were persistent with him. He's taking her off all of her current meds and starting her on one (yes ONE) new med (depakote) that she only has to take once a day. Dr says the side affects could be upset stomach (which she's already been having) and sleepiness (Ashlyn was excited about this). And she only has to take it once a day in the evening. The reason they didn't give her this med to begin with is because it can cause birth defects so they are going to start her on a folic acid supplement already to keep her supply up since it depletes it in your body and this is the main cause of the birth defects. Then once she is ready to have kids, she'll have to work closely with the doctors to make sure all is going well. We'll have to watch her closely as she'll stop taking the new meds completely tomorrow and start her new med tonight. The only one we have to take her off slowly is the lamotrigine. 
OK, sure hope this one works out!!!!

Doctors

I think we finally got through to the doctor what was going on, after calling them twice and sending a chart and them still telling us to increase the first medicine and stop the second, even though the problems started when we increased the first. ugh. We have an appointment with them on Tuesday now so hopefully we can get it straightened out. In the mean time, Ashlyn has been feeling somewhat better and Emily miraculously finished her weighted blanket in 4 days and it's been helping her sleep. Here is the finished product - it weighs 15.8 lbs!

Thought I'd share this too, just filled up her medicine organizer for the week:

She says she feels like an old lady, and this isn't even everything she's supposed be on!

First Day of School

The kids both had a great first day of school, Ashlyn as a Junior and Colten a 6th grader. I was glad since I always worry about them having a good first day, but I was especially worried about Ashlyn today, but she had no complaints and she even got up in her Spanish class and talked about her diagnosis and what all happened because they had to talk about something that changed their life over the summer. I'm glad she's comfortable talking about it.

She's been doing somewhat better since we took her zarontin dosage back down. We haven't heard the results of the blood test yet, but I called today about it today and they were waiting for the dr to look at it. She's still been having trouble sleeping, but is able to get back to sleep fairly quickly instead of staying awake for several hours like she was before, but she's also still not liking the crazy random thought processes she's having. We found that it helps to put pillows on top of her for her restlessness. My friend Emily had made a weighted blanket before to help her son sleep and while we were at their house this weekend, Ashlyn tried it out and liked. So now, Emily has volunteered to make her one, I'm so excited and appreciative, I think it will help a lot. 

Anyway, here are the kids ready to get on the bus this morning:
 

Med Update

Ashlyn didn't sleep good again last night and cried again for no reason, but was feeling a little better during the day yesterday. I called the dr again this morning since we didn't hear back from them yesterday (frustrating!) and they finally called back. They said to go back to 1 pill in the morning & evening of the new med (instead of 2 in the evening) and they need her blood test results. I already had an appt to get this done set up for tomorrow so we'll find out more info then I guess. I also asked if she should still start the other new med this Friday and they said they'd let us know. This is all so crazy. Not sure what the blood test will change if anything, but she was experiencing at least 6 of the 12 side affects listed in the prescription info that you should call the doctor for as well as most of the common side affects. Ugh.

Crazy New Meds

Ashlyn has started the first of her new meds and things aren't go too well so far. She began it a week ago Friday and we upped the dose this past Friday and then unfortunately gave her 1 pill too much on Saturday. The past 3 nights, she hasn't been able to sleep very much. She is very worried about something embarrassing happening to her at school next week. She's had 2 times where she burst into tears for no reason and 1 time where she almost did, but we managed to keep her from doing so by saying lots of prayers over and over again. Her muscles are tense and she has some feelings of numbness in her arms and legs sometimes. I called the dr this morning and they're supposed to let us know what to do about all of this. It's driving us all crazy. The worst feeling in the world is being helpless and not being able to fix what's wrong with your babies :(
I can't imagine starting another new med and upping this one again right before school starts, but that's the current plan. We shall see what the dr. says I guess.