The one about EPGP

I love these photos of my boys cruisin' around the house in their new car. :) The last one is extra special to me. I was shooting the pictures and realized Dawson was having a little seizure. Knowing he was in a safe place, I watched as his big brother put his arm around him, pulled him close for support, saying "It's ok. I gotcha Daws. I'm here." So glad I have that picture. So glad they have each other.

EPGP is short for "Epilepsy Phenome Genome Project." It is the largest ever research project done for epilepsy that is going on RIGHT NOW. We are so excited it is being done and that we can be a part of it!!!

http://www.epgp.org/PressReleases/Documents/EpilepsyAdvocateArticleWinter2010.pdf

They are studying the genes and symptoms of siblings that have Idiopathic Epilepsy- or seizures without a cause. There aren't any immediate results for us, but long term this has awesome potential for anyone with epilepsy and their families.

We've done the paperwork to release our hospital records/MRI's and EEG, the kids have to have some blood drawn, and now I'm getting through the phone interview portion of it. It's supposed to take aprox 2-4 hours, but I've got 3 kids . . . so it's kinda long. Yesterday morning I was on the phone for a couple hours, mostly talking about the specific symptoms of Halle's seizures. I wasn't prepared for the sudden emotion that kicked me in the gut. Maybe I should have expected it but I felt totally drained and depressed the rest of the day. However, I am not complaining. I just am SO GRATEFUL they are actively working on figuring things out.

While I'm on the topic, here's some updates for all you sweet friends who've asked how the kids are doing:

DAWSON still has 5-10 seizures every day. They are short, only 10-30 seconds, and the head dropping is a lot better (mostly). This is a HUGE Deal for us. With him crawling around, up/down stairs, etc it's so nice that I don't hear that familiar *crack* of his head whacking the floor, table, or whatever. It also has been great for him to be able to sleep in his own bed (mostly) since I know he won't get hurt on the crib's railing. We both are getting a lot better sleep which makes a huge difference in every other part of our lives.

For a couple weeks the head drop was totally gone, but the last maybe 2 weeks it has been coming back. It is slowly getting worse but as of right now it's more like smalls nods as opposed to complete loss of muscle control.

So far he has not done well on the medication. 3 times we have started it and he's got a high fever within 24 hours. For now, where the seizures are so mild, Kevin and I feel more comfortable with the seizures than adding medication to the situation. These meds are not for under age 2 anyway, since they have no idea how it could affect the quickly developing brain of an infant. This makes us extremely uneasy. So if they start getting more severe we'll have to decide where to go from there, but that's where we are now.

DREW still hasn't had a for-sure seizure since we got it under control. I can't tell you how nice it is to not be c.o.n.s.t.a.n.t.l.y. scared of what he's going to fall off of and where he is. Of course, especially when he laughs, I have that habit-like-reminder and fear that it's back- but so far (except for twice) they've all been him just laughing. (About a month ago, it happened twice where both Halle and I weren't sure. Out of the blue he burst out laughing about nothing for 3o seconds or so. Afterward he said nothing was funny and didn't want to talk about it. No other symptoms. Made me nervous for a few days but nothing else happened)

Also he has had a tic-like-jerk thing going on for about 3-4 weeks now which has me on edge a little. Sometimes during the day it's pretty obvious, other times it's gone. We don't know if this is related to the epilepsy or what. I know sometimes at this age it can be a normal thing. It is frustrating, the not knowing. I hate being paranoid, but I don't know how not to be anymore.

HALLE is still seizure free since our ward fast in 2007. She does have tics which come and go but we try to down play them as much as possible. I've noticed that when it's pointed out to her, she gets worried and then it gets severe and takes longer for it to go away. Sounds like an easy solution but sometimes it's REALLY hard to not let it get to me. A *sniff-grunt* tic for example, came back in December. It really grated on my nerves- especially with the boys' seizures going on around the clock- to have her repetitively make a similar type of sound that she'd made in her seizures- it was just extremely hard. It played on my fears over and over and over all day, every couple seconds. . . sometimes I just had to shut myself in my room for a minute to just breathe. Lame. She's doing well now though and I'm grateful. I wish I knew how to handle it better when it comes. bleh.

She hasn't had a migraine for probably two months now. (yay) She does get headaches if she's stressed or doesn't get enough sleep. We stick pretty tight to her bedtime, and giving her ibuprofen at the start of the headache has been effective in keeping them under control. Just like in Drew's situation, it's frustrating to know that it CAN be related to epilepsy but it might not be too. Feeling dumb for being so paranoid.

--------------------------------

Anyway, that's kind of a summary of all the negative stuff. I have to add that OVERALL we are VERY HAPPY with how well they are doing. We are very, very grateful. It's such a good feeling to be back to the everyday stuff. I do not take any "normal" day for granted. I've learned a LOT about priorities- things that matter, things that don't. Just like any trial, I wouldn't CHOOSE it, but I'm glad for the lessons learned. I'm so glad that Kev is so supportive and by my side- even when he's rarely home. I couldn't have survived the last 5 months without him. I have to say, we make a pretty good team.

And REALLY great kids. :)

The one with an itch

Our internet has been up again, down again, up, down. . . ever since we moved to Provo. I can not tell you how annoying it has been. So *CROSS FINGERS* I think we are UP with another new provider which (hopefully) should last this time.

I've really got the itch to catch up on this blog. Hopefully I can find the time this week. Sounds so fun. Lots has been going on around here.

Like this:

Look who turned. . .

I have so many more pics and things to upload. At the moment though I've gotta put kids and the house to bed. Be back soon.

The one who enjoys doing laundry! (really!!)

Survival mode.

We moved. Then I got pregnant. Lost a baby. Prego again. Sick, sick, sick. Newborn. Baby blues. Hubby gone. Seizures. Christmas. Depression. Etc.

I feel like I've only been barely surviving for a while now. Barely keeping up with the routine and letting so much else slide. My house has turned upside down. Cupboards, drawers, & house overflowing with things I needed to clean and catch up on. Feeling like I will never catch up or find myself again. Bleh.

I think some of the worst of the overwhelming stress comes from LAUNDRY! I had no idea when I agreed to becoming a wife and mother of the never-ending-fight that is keeping my family clothed. I have been swimming (drowning) in loads for years now. Every week starting laundry day by re-washing the last load from the week before that never made it out of the wash. Eeek. Going through piles of used-to-be-folded clothes all over the house sorting the clean from dirty and would have been clean but now they're with dirty. Rewashing. Refolding. Kids unfolding, leaving more piles all over the house, piles to DI, piles of mending, ironing, . . . to the point that I start feeling like giving up on it all. Like my whole existence is soo meaningless. Silly, yes. But true.

About a month ago I was probably on the brink of a nervous break down. Exhausted and depressed, I fell asleep in the middle of the day. A very rare but needed nap. In my sleep I thought of a new method to my laundry routine. I woke up with the ideas in my head & tons of energy. I ran to the store, bought a couple things, came home with enough time to start my new plan before getting Halle from school.

I didn't expect it to change so easily or so well but my new dreamt up Laundry Makeover works!!! With very little effort I have successfully kept up on laundry for a solid month. "Kept up" is the wrong wording. I feel like I'm not even doing it anymore! It's so simple! What was I thinking, why did it take me so long to realize that the way I was doing things was simply not working?

It is silly maybe how big of a difference it has made. I feel like this huge never ending stress in my life is gone. I am even enjoying it!

I told this to my sister who replied, "Who are you and what have you done with my sister?"

The only reason I blog about such a silly thing is to remind my future self when reading this: When things are not working, stop it! Revamp! You don't have to do things the way you see other people do it or the way you've always done it. What works for others or what used to work for you, doesn't matter if it isn't working for YOU. Take control and fix it! Find a better way.

Not just with laundry. But all of it.

Having such a huge burden gone has effected everything. I am back to making my meals in the morning. My dishes routine is working again. I have had the extra time to put most my cupboards etc in order again. It's like there's a light at the end of the tunnel...with projects I have been craving to do for so long. Stuff I enjoy. The last week or two I have started to feel that old me again. That girl that used to enjoy LOTS of things. Feels so good.

So things are going much better. Crazily enough, thanks to the laundry. Who would have guessed? And to whichever angel up there took the time to whisper some tips in my ear, thanks. Keep me going, k?

My newest problem to fix? How about how I turn in to the betime-nazi-mother-from-Hades every night about 8:30?

I-already-told-you-a-gazillion-times-brush-your-teeth-stop-spitting-on-your-sister-i-don't-want-to-hear-any-more-tattle-telling-why-aren't-your-pajamas-on-STOP-climbing-on-my-head-I-can't-hear-you-when-you-talk-like-a-baby-thank-you-so-much-for-spitting-up-on-me-again-what-in-the-world-were-you-thinking-I-don't-care-what-just-spilled-and-broke-get-in-bed-before-I-loose-my-mind-what are-you-doing-out-of-bed-again-tHiS-DaY-iS-sO-oVeR!!!!!

This is why Dad's are supposed to come home at the end of the day so the mom isn't alone to become a monster.

I'm working on it, ok?

*sigh*

The one for Brandon & Nicole

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

Love this one

Sooo sweet!

Can't get over how much she looks like her daddy in this picture.

WOWZERS!

"N" for Naomi

The one foggy morning

This morning was foggy and oh-so-beautiful. Still in my PJ's, I threw some clothes on Drew and drug him out into the cold for a couple quick photos. Good thing he was a good sport about it.

What a handsome guy.

All these pics look almost the same, I know. It's just that I can't decide which is my fave.

The one with a minute for therapy

Halle in 2007

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:

OUR MIRACLE

HALLE

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.

The one that's Awesomeness

DREW HAS NOT HAD A

SEIZURE SINCE JANUARY 15th!!!!!!

Isn't that so awesome!!!

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.

Thank you so much for all the prayers!!

The one because I feel like just sitting here

Ahhhhhhhhh it is sooo nice to sit down. What a long day.

I had a recital for my students tonight. It went pretty well. I have 23 students. 21 of them played tonight and 12 of those had never played in a recital. It was scary for a bunch of them but THEY ALL DID IT!! Wahoo!! Sure, several of them goofed in spots that they'd played flawlessly 100 times before but that's what these things are for.

I remember when I was younger how terrifying it was to play in front of people... my hands would shake, my mind would go blank, ... it was the worst. Now I've done it so much it doesn't faze me.

So I do these group lessons and recitals to give the kids the experience playing for people. It gets easier with each performance, so although they might hate me now for making them do it, it'll pay off.

I
AM

SO

PROUD

OF

EACH

ONE

OF

THEM!!!

I really mean that. I love this job.

21 of my awesome students. Brinley, Jacob, Nick, Ben, Alex, Emma, Brigham, Dallin, Haylee, Halle, Ashton, Savanna, Cassidy, Sarah, Chrstopher, Maryn, Amy, Rae, West, Isaac, Addi. Not pictured Drew & Kailey

The one sleepy mom

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.

I am so blessed to be this little dude's mom.

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?

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.