I took some pics of Nicole's beautiful baby,
Naomi
(aka Dawson's future girlfriend) Lol.
Mmmm, is she sweet or what?!?
There's just something about baby feet
It started four years ago today.
Memories find there way to the surface this time each year and with everything going on lately, this year is no exception.
January 25, 2007
I had picked Halle up from her dance class but didn't go home because I didn't want to be alone. Kevin was working so late every night so he was often sleeping at his parents' house in Springville. So instead of driving home to Eagle Mountain, I went to the Farr's to hang out for a while.
It was around 8 PM. I was typing a letter to my nephew Christopher who was getting baptized. Halle, 3 years old, was playing in the kitchen, a few feet away but where I couldn't see her. I heard her make a subtle noise; something between a sniff and a grunt.
Halle is having a seizure.
The impression came out of no where. I had never been around seizures and so I had no reason to associate that sound on my own. Nevertheless and as crazy as this sounds, I somehow knew immediately what was going on. Instinctively I ran to her. My mother in law, Tamara, was in the kitchen with her.
"Halle is having a seizure," she said confirming what I already knew.
I watched in disbelief. Her head to one side, crazy eyes, groaning, awkwardly walking in disoriented circles. I grabbed her to me.
"Halle! Halle honey, can you see me? Hall, look at me baby. Can you you hear me. . ."
"She can't hear you, Mari."
It was awful. I was right there, but I was still on the outside and I couldn't take it away from her.
I immediately called the Instacare. Then I called Kevin. He'd grown up seeing these with his sister and so it hit him even harder than I had anticipated. While talking to him, Kevin's sister called up the stairs to me, "She is having another one!"
Kevin was there within a few minutes and we drove together to the ER.
You know how sometimes you are sick and by the time you get to the doctor you start to feel better and so you end up feeling like an idiot? Well, that is what I expected to happen. I figured we'd get to the ER, they wouldn't see a thing, we'd get back home and forever think, "Well that was a really weird scare." So it was really unreal when we got there and the seizures kept right on coming. And coming. And coming.
That first night was very traumatic for us. I was the type of mom at the time who could barely get through an immunization shot without crying. So when they started that first IV and she screamed and screamed I had to leave while Kevin held her down. I could still hear it down the hall. It was awful.
They took her to a room with a long table to sedate her for an MRI to check for tumors and abnormalities in her brain. She would have to hold absolutely still to perform the test. However she wouldn't fall asleep. She would start to relax and then a seizure would wake her up, she'd frantically look around for me, trying wildly to get off the table.
They ended up having to strap her down; her arms, legs, chest, forehead and chin and then gave her another dose of sedative. Halle however is a fighter and very cluster phobic. She was panicking so hard they again gave her more. Still trying to communicate, her words were slow and slurred..."Mooommmmm!! Mommmmmmm, Mommmmmeeeeeeeeeee!" Her eyes were still trying to find me and tears running down her cheeks. I'll never forget that hour and a half we got her sedated. A sweet nurse sang Primary songs with me in her ear, trying to get her to relax. I remember crying when I realized she was still in her leotard and ballet shoes from dance class.
She was just barely fine! She's always been healthy! I just need to get her home so I can tuck her in her bed where she belongs.
The nurse and techs discussed which drugs would be ok to combine for her age etc. They explained they usually didn't combine this and that but they were pretty confident it would be fine. I remember so well the feelings watching them inject more and more into her IV. "ARE YOU SURE YOU KNOW WHAT YOU'RE DOING!?!" I heavily felt the responsibility for my little girl. Waiting to wake up from the nightmare.
Luckily, I'll toughened up a LOT now, but that first night was unforgettable. It was 4 years RIGHT NOW and the feelings still sting.
Here's 2 links to older posts I wrote about it:
Easter Day Miracle 2007
Life can sure take you for a ride, can't it? Sheesh. People have said things like, "At least you've been through this before and so now you know what you're doing with your boys." There is a little truth in that but overall it does NOT feel that way. With Drew it is devastating because it's my DREW. Dawson is devastating because it's my DAWSON. It's all the same thing but completely different. With Halle it took her personality away. Drew is older, is aware and somewhat understands which has pros, and also plenty of cons. Dawson is tiny and so trusting it breaks my heart every time. All 3 situations, all 3 kids, it's altogether and individually just plain hard.
I know it's not great to always dwell on these memories but tonight writing this feels so therapeutic. I'm so grateful and blessed that Halle and Drew are doing so well right now. Dawson will get there too. I know we have so many blessings.
However, I won't lie and say it's not hard every single day. For some reason, even though things are so much better for the time being, this after depression stuff has been overwhelming. It probably has something to do with facing the reality without the adrenaline and protection that "survival mode" brings. Epilepsy sucks because it's not something that often "goes away" and EVEN IF/WHEN IT DOES you still live with "When is it coming back?" Will I be there to take care of them? Would it take Halle's sweet personality again? Will it show up when they are older and driving? Could it hold them back from living their own dreams? The seizures themselves don't scare me as much anymore, it's the long-term-scary thoughts that I have to accept not having answers to.
I know this is looking WAY TOO ahead of things and so I KNOW I need to just have FAITH, REMEMBER this life is only part of the big picture, take ONE day at a time. . . blah blah yadda yadda. Trust me, if I didn't already know this I wouldn't be able to function at all. However, right NOW, I am letting myself just remember, talk and feel, and that's ok. I'll get past this moment and be just fine. I just need a minute so I can get there.
We tripled his medication that weekend before. It took several days but we started to see a difference on Sunday, slowed down throughout the week and stopped Friday. He had the worst seizure he'd had BY FAR the day before. Triple intensity and length which was awful, awful... but here we are now. So exciting.
I'm sorry to everyone that I haven't told personally. We haven't told hardly anyone. We haven't wanted to "speak too soon" and have to start all over. I still feel that way, but it's been over a week. That's gotta be really really good, right??
We don't know if we're out of the woods and chances are they'll come back sometime. My stomach turns every time he laughs, or twitches an eye. It's not that I am trying to be pessimistic, just realistic. I'm trying to not have paranoia as he walks himself to friend's houses again, climbs and jumps off everything...
The medicine is making him sick every morning and almost every night. Hoping this goes away with time. Counting blessings.
Dawson is still the same as before. One thing at a time. We'll get there too.
I've spent a LOT of hours between 11PM-7AM calming, rocking, soothing my baby over the last 2 months or so. Most days I have to just try to ignore that heavy-can't-keep-my-heavy-head-up feeling.
I'm not complaining though. Being loved by a child is one of the best, sweetest feelings ever. In those late hours, I can feel and know he loves me :) and wants me around. His seizures wake him and before he even opens his eyes, he reaches out to make sure I'm near. If I am, he'll usually stay calm enough to get right back to sleep. So while it lasts anyway, I'll take the tired.
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?
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.
More after-seizure-head drops
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."
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?
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.
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.
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.
