Thursday, January 6, 2011

The one with updates


Love the Drew Man

First of all, thanks to everyone for all the kind comments, emails, notes on facebook, dinners, phone calls, texts, prayers, thoughts.... they all go a long way. We are so blessed to have so many sweet friends.

Here's an update.

Dawson has stayed about the same. He still has 5-10 seizures a day. Sometimes if I'm not paying attention I forget he's even having them. They are quiet and unless I'm really looking, I'll miss them. Often I'll just look over and see his sweet little head dropping in the after-seizure-stuff. :( It's still sad to see but he is still just as sweet as ever, and a really good sport about the whole thing.

Drew hasn't been doing as good. Seizures are getting stronger, longer, more in a row, and closer together. They used to look almost exactly like he was laughing. Now he moans, tenses up, rocks back and forth, strains, drools, & then it's followed by more the Gelastic/ "laughing" seizures... etc. They come in "clusters" or several seizures (usally around 5) in a row. He will have 1-4 CLUSTERS within a few minutes of each other about every 1 1/2 hours. Most of the time I can pretty well guess when he is going to have one, they are really regular lately. I am keeping track of them in a little journal for the doctor. Just to give an example, I'll copy what I wrote yesterday:

WEDNESDAY, JAN. 5, 2011-
- seizures continued throughout the night. Didn't record the times -
7:15 AM - 3 clusters. About 5 seizures per cluster+ Aftershocks.
8:45 AM - 3 clusters. about the same.
9:30 AM - 3 clusters. same.
11:00 AM - 2 clusters. same.
12:20 PM - 3 clusters. same.
1:50 PM - same. Fell out of chair. Shaking more intense than usual. Legs stiff. Toes outstretched.
3:10 PM - same.
4:40 PM - same.
5:45 PM - One, long seizure. Backed into the wall and got "stuck" there, shaking.
6:50 PM - 2 clusters. Fell asleep immediately after. Pale, bright red ears.
7:25 PM - was asleep but seizures woke him up. 4 hard clusters. Upset that Halle's ballet class saw. Red patches are still appearing around his neck and shoulders, which dissappear within 1/2 hour or so.
- stopped recording for the day -

Anywho. I talked with the Doctor this morning. We are going to be tripling his medicine within the next couple of days. Hopefully we see some kind of change soon.

Tonight I am cleaning out my SD cards. Here's some photos/videos. I don't know why I feel hesitant to put them on a blog... I might even change my mind and take them back off. It gives me a stomach ache to have these videos. I dunno. I occassionaly record them for the doctor and for the record...but even when I'm recording it still feels wrong. I mean, these are my sweet babies and part of me wants to keep this totally private for them. Another part of me wants to share whats going on with my close friends & family who are far away.

So for the moment anyway, I'll share a little bit. We'll see if I take it down in the morning. lol.

Here is the end of one of Dawson's seizures. You'll see they are MUCH milder than Drew's. Notice the head-dropping afterward. See why he gets hurt sitting at the kitchen table? Or crawling around on the wood floor?

video

Here's another end of a seizure. The mild shaking doesn't show up on camera, but if you held him, you'd feel trembling. If you listen close, you'll hear quiet grunting.

video

More after-seizure-head drops

video

Here's the last part of one "cluster" of Drew's seizures. He gets SOO mad at me that I don't let him walk by himself to his friends houses anymore. Check out this video and then can you blame me!? Also, notice the after-seizure-sparks at the very end. It looks like he's just hyper, but if you are close enough to his eyes, you'd see that they slightly roll, right as he hops & laughs. "Aftershocks."

video
See how the first seizures doesn't look as much like a "laughing seizure," but then the ones at the end of the clusters do?

video

I know it looks like he's laughing about something. But really, he isn't. They do not make him feel happy. He will tell you - he remembers the whole thing.

video
Check out the knocking over of my Christmas puzzle. Dang it!!! Does it say how big of a nerd I am that I was excited to fix it?!? Haha.

video

Here's a few pictures from the other cameras from PCMC:

Primary Children's Hospital

Drew's EEG . . .

. . . and in the next room Dawson's EEG

NOT happy about the IV. . .

but we made it. Brave dude!

Dawson's MRI followed by. . .

Drew's MRI

In recovery with both . . .

my beautiful boys

Best Friends/Brothers

Another thing we've had going on lately is Halle's Migraines. They got bad enough over the Christmas break that we took her to the doctor. They found a "flutter" in her left eye (I don't really understand what that means). That's where here headaches have been too. So they did an MRI. . . which showed inflammed sinus's, but that's all. Migraines can be connected with epilepsy so of course it makes Kev & I have to just. keep. breathing.

She was really nervous to go but we got through it.

Afterward we got haircuts together (hair ties and things have been making the headaches worse). Anyway, she was super loopy and tired in the chair but we ended up looking pretty cute :)

We are doing pretty good considering it all. Still trying to keep everything as normal as possible. Halle does much better when she has LOTS of sleep and no extra stress. So that's what we're working on.

It was an awesome Christmas break. LOVED having Kevin home!!! I'll blog about it later. But there's the updates for now anyway.

4 comments:

Miss Molly said...

Mari,
It breaks my heart to see this happening with your little family.
I am so sorry. I had no idea. I wish so much there was a way to help them. I'll pray for all of you. Stay strong, I know you will get through this one. They will come out of it strong just like little Halle did. Give my love to your kids. I miss you guys!

Ms. Code said...

That must be so hard for you and your family. It was rough on me when when I had to spend several days in the hospital doing testing because of seizures. I can't imagine how difficult it would be to watch my children go through it.

I am impressed with how well you are documenting the episodes. You are doing what is best for your kids and it's obvious how much love you have for them.

Alicia said...

Oh Mari, you are an amazing mom! Your sweet babies are so blessed to have you. We love you guys and miss you. Know that you are in our prayers. If there is anything we can do to make this trial easier, please let me know!

Emily said...

You are one brave mommy. Geesh. Seeing those pics of the kids in the hospital looks pretty rough. Glad things are looking up. I'm really having a craving for a good phone chat...soon!