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.

Leaving soon

Talked to dr again and found out I misunderstood the meds she'll be going on now. We are going to slowly start a med called zarontin, then add keppra then slowly take her off lamictal, hope I have it right now. Dr showed us the eegs and she apparently has dozens of episodes a day usually lasting less than 5 seconds. She thinks she knows when they happen but most of the time they're so subtle it's hard to tell. According to him they're textbook generalized seizures which means her whole brain is involved. For the time its happening she has 3 spikes in the brain waves per second. He showed us video while they happening. Very hard to tell. But we're free to go now yay! Later....

Unattached

Electrodes are coming off as we speak and then she can take a shower!! Woohoo!! I ordered papa johns pizza for lunch and we're going to take it to the outside courtyard to eat, yay! She's so ready to get out of this room. We will have wait for the dr to come by before we leave though.

Fall Risk

So we're on day 3 and looking forward to going home and sleeping in our own beds tonight and not being video taped 24/7. Had to share this photo, they put this band on her yesterday, apparently they forgot to when we got here. I know technically she is a fall risk, but not really so we kinda laughed about it. The only time she's had one of the big seizures she was sitting down. But anyway, they are very serious about her safety. When we push the button the EEG tech calls over the intercom and two nurses come in to check on her. We have had a few times she pushed it accidentally, oops! Ashlyn has 2 cameras pointed at her at all times in addition to the wires attached to wall. Shes not supposed to move around the room too much so they can keep the cameras on her. The part of the hospital we're in has the rooms in a circle shape with a hallway around a room in the center where the EEG techs watch all of the patients. I think there are only 3 patients they watch at a time. I haven't seen any of the other patients but some rooms have baby cribs and toddler beds, can't imagine doing this with a small child or baby! Anyway just thought I'd describe more what was going on here.

We had a visit from my uncle Jerald last night which was very nice. He got to witness an accidental button push :)

So now we're just waiting to hear when we can leave. Ashlyn is really looking forward to taking a shower and washing her hair!! And also not being attached to the wall :)

Dr Visit

Doctor came by this afternoon after looking through all of her data. We ended up pushing the button twice this morning. Once when she forgot what she was doing and once when she twitched. This is to mark her EEG as a interesting point. Anyway dr said she had several times where there was activity that wasn't marked and it was hard to tell if she blanked out at those moments or not, but they were happening. He says she has primary generalized seizure disorder and will probably continue through adulthood. She also has absence seizures (the blank out moments) which is included in the primary generalized seizure disorder. He gave us some medication options but suggested that we increase her current medication and add keppra. We will probably go with that. It can always be changed if there are issues. She shouldn't have many limitations as long as things are under control, but of course there are few things she needs to stay away from - swimming alone, bathing alone, hard contact sports, alcohol, and medicine with benedryl. And when she's ready to have a family, she'll have to work closely with a neurologist and a gyno before hand. Not exactly what we want to hear but at least it's treatable. We'll get to go home tomorrow afternoon.

2nd day

They did another flashy light test right when she woke up this morning. We slept ok, but it's not home...
The gauze fell off over night so they just decided to leave it off since its mostly so little kids don't pull on the wires. Here she is gauze less.

Not much happening

We're just sitting here now. She had a flashy light test and doctor came and got her history from the time she was born. I should have brought her baby books since I had no clue when she started crawling, etc, but I knew it wasn't late so that was good enough I guess. If we don't notice any episodes today, they're going to change her meds tomorrow. Other than that we're just sitting here entertaining ourselves. We decided it looks like she has an avatar bond (like in the movie). But she can't communicate with the wall. Darn.

We're Here!

Just getting settled in at Dell's. She's all hooked up and we're waiting for the dr. Here are some pictures of the contraption attached to her. Hopefully they come through.

Schedule

We have Ashlyn's testing scheduled for next week Mon-Thur. Not sure why they did 4 days, but hopefully it doesn't take that long. They have wifi there, so I'm going to go along with her and work from there so that John doesn't have to sit there bored the whole time. Hopefully that works out. We will be checking in at Dell Children's at 9am on Monday and they said we'll have a private room with a pull-out couch for me and a shower, cable tv, and a Wii and we can bring extra pillows and blankets and whatever else to keep her occupied. She got several books from the library and has an English project she needs to work on, so she should be good. From what I understand, she's basically going to be stuck in the room the whole time with electrodes attached to her head and a button to push if she feels strange or feels like she's blanking out or something so they can capture that moment. If they get enough info, we should be able to go home early. Then once they see what's going on, they can better diagnose her and get her on the right dosage of meds. I really hope this finds some answers... praying!

I will probably post progress here on the blog while we're there and some on facebook, too, so check back next week!

In the mean time, for your viewing pleasure, here is Colten decked out in his football gear. He started full contact camp this week and it's tough. He's doing good so far, but is learning that he needs to build up some muscle and conditioning :) He wants to be a 'fat boy' (what they call they linemen in Mason)!