I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Tuesday, September 18, 2012

More Seizures

I've lost track of how many seizures Alex has had in the last month.  Too many to count, unfortunately.  They seemed to start getting bad while we were on vacation.  I think she had 6 while we were there.  As of right now she's averaging two a day.  Some nights she's having 3 and 4.  It doesn't make sense, but they seemed to have gotten worse since we added the Keppra.  It's coincidental, but frustrating.  We saw her neurologist on Friday and he left her Depakote doses the same, but he's increased the Keppra.  Her Keppra level was 18 and according to her doctor they can go as high as 60 (I think that's the number he gave me).  So he's gradually increasing her Keppra dosage, we started this week with an additional ml three times a day and on Friday we'll increase it another ml so she'll get the Keppra three times a day, 4 ml's each dose.  She's still having a few a night, but her doctor did say that it could take up to three weeks for us to see any difference.  Talk about a test of patience. 
We are in the process of getting an MP5 alarm for her bed.  It's a sensor that goes in between her mattress and it will alarm any time there is any convulsing.  Last Saturday she was taking a nap and I checked her monitor to see if she was awake yet and she was in the middle of a seizure.  I never would have known if I didn't look at the monitor.  Normally when she's convulsing I hear it because her feet hit the sides of her bed.  Aaron was working the NASCAR races on Saturday so I was waiting up for him and doing laundry around midnight.  I went into her room to put some laundry on her dresser and when I walked in her room she was again in the middle of a seizure.  She was laying perfectly straight so there was nothing her arms or legs were hitting.  In reality, I really don't know how many seizures she's actually having.  The alarm is something I definitely can't wait to get in place - needless to say, sleep hasn't been something we've gotten a lot of lately!.
She's had a really tough week this week, but it doesn't help that she's had a really bad respiratory cold/virus going on.  Hopefully she's heading back to school tomorrow!
Lots more to blog about - stay tuned!

Friday, September 7, 2012

Back To School!

Is summer really over?!?  How did that happen??  It went by SO fast!!  The kids started school on Tuesday and while Zach was a little bit nervous, Alex was BEYOND THRILLED to see that bus pull up in front of the house.  I love seeing how happy the bus makes her!

My big third grader!

And my very happy fourth grader! 

I tried getting a few pictures of her getting on the bus but she was flapping and moving so much they were all blurry!

Day 2...did somebody say BUS?!?
The mornings are now a little crazier than usual.  The schools are now on A and B schedules for bus purposes.  Our zoned school doesn't have the type of classroom that Alex has to be in so they have to go to different schools and of course, Zach is on the A schedule and Alex is on the B schedule.  Zach has to be at school and in his seat by 7:40 and Alex doesn't have to be in until 8:10.  Last year they both had to be in school by 7:50 so Alex would leave at 7:20 and that would give me enough time to finish getting Zach ready and walk him up to school.  This year Alex's bus doesn't come until 7:55, so I had to put Zach on the bus and can't walk him anymore - which really stinks.  The school is literally across the street and I like that little bit of extra time I had with him in the morning. I always found out extra little tid bits of information from him on our walks.

I know this is going to be a great year for both of them and I'm excited to see how they both progress.  They've both had a great first week.  Alex has been so happy and she's done some of her best computer work already.  Hopefully it doesn't wear off!

It's been an adjustment for me this week for sure.  Now that the kids are gone during the day and I'm not working, I have lots of projects that I want to get accomplished.  I will admit, it's nice when they both get off in the morning and I can sit on the porch and enjoy my coffee without having to dash back in the door and start getting ready for work!

Lots more blogging to catch up on!