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)! 

Neglected

I decided I've been neglecting this blog for too long, the summer's been busy busy so far! June flew by with Ashlyn spending a week with our good friends, the Wolf's, and then both kids going camping with Omie & Opie A and then a trip to the beach for Ashlyn's 16th birthday with 3 of her friends and her Omies and Opie (pics here ). Then we had a couple of weeks before Colten went to Hermann Sons Camp and then this week Ashlyn has been volunteering at a VBS in Mason and Colten has been going to the VBS and had a football camp. Next week is more football camp for Colten. So far he's held up pretty good! 

Today we went to see Ashlyn's neurologist in Austin again. She's had 4 seizures now, the last one of which happened the Monday before her birthday and we don't know why. The two before that, we were pretty sure came from lack of sleep. Since the last one, she's been zoning or blanking out more and recently started twitching her hand and head on occasion. This has been very concerning and we are always worried about how she's feeling and if she might have another seizure, even with her medicine. The doctor wasn't sure what to make of it exactly and said we could try upping her meds and see if that helps or test her more thoroughly to see if the blanking out episodes she experiences are mini-seizures or just some side affect of the medicine. We decided to go with the latter, so we'll be scheduling the test for next week or the week after and she'll be spending 1-3 full days in the hospital being monitored by an epilepsy monitoring unit or EMU. Hopefully they can find something out and figure out how to fully control it. It's so frustrating not knowing how to fix this, especially since it's preventing her from driving.

So besides this, we've been trying to take it easy so she can get enough sleep (doctor recommends at least 9 hours every night, tough to do for a teenager!) and trying to stay cool. I will update again after she has the test, please pray for good news!

Easter & Stuff

We had a great Easter weekend, the weather was awesome, the bbq was delicious and the sunrise was amazing!!! Hope everyone had a great Easter! 
Here are pics from the weekend:
https://picasaweb.google.com/115602357358508646145/Easter2012

In other news:

Colten had his last Cub Scout meeting and first Boy Scout meeting! Which means, we are no longer leaders (for now) and get to pass the honor on to some other parents. They are hoping John will be a leader in Boy Scouts, but we are waiting awhile before committing.  We'd like to see how things work before leading anything!

Here is Colten with his awards from Cub Scouts:

This week, we signed Ashlyn up for her classes for next year (Junior Year!!!) scary!


We have been enjoying the beautiful Spring weather and all the flowers, but we need rain again. Hope it keeps coming! Our garden is slowly growing and the chickens are getting big. Soon we'll need to get a bigger area for them to roam.


We have been discussing Ashlyn's 16th birthday - coming up in a couple of months. Instead of a party, she wants to go to the beach with a few friends. So now I'm on the search for a condo or something for us to all stay in. Didn't realize everything booked up so early, wish me luck!