Sooner than Expected

A seizure at school...

it happened sooner than I thought.

Now I have a little buddy the rest of the morning :)

One of my Pet Peeves

One thing that really gets to me is when I call my family to dinner and they don't come.

Now, I understand taking a few seconds to finish something up before coming to the table, but I'm talking about many, many minutes.

I have been known, on occasions, when my family does not join me at the table, to go ahead and start eating by myself.  They eventually notice and then guiltily join me.

Well, today, I spent some extra time and put one of Andy's favorites in the crock pot...Chicken Corden Bleu...awesome recipe found here.

I knew he was going to go to the Brigham City Temple open house with the youth in the ward right after work.  I calculated time and figured he should be home around 6:00 p.m. (that was even giving him some cushion time).  About five o'clock I even made some herb bread...I usually don't make much beyond the main dish :)  At six I called Andy's cell to find out when he would be home.  He told me that they were out of the temple and were going to walk back to the cars and have something to eat before they headed home.

oh.

After I hung up the phone I called the kids to come to the table.  Since I was finishing up last minute details on the meal I didn't push it when they didn't respond immediately.  I asked again a minute later and then when they didn't come I raised my voice (slightly :) and called them a final time.  This time I got a couple of whining responses basically saying they were too busy doing something else.

 (They had found their Silly Putty in the bread box which they hadn't seen for months.  You see, I store many of the little trinkets and things I don't necessarily want them to keep in the bread box in hopes that they will forget about them.  After enough time has passed and they have forgotten completely about these things I throw them away.  I know that sounds really mean but it is one way I have found that helps to keep the clutter down.  Anyway, someone found their little treasures in the box and they were happily engaged.)

After that response I dished up my own food and enjoyed a solitary dinner.  The kids were clueless.

Here they are half an hour after I called them for the third time.

I finished eating and then fed Ben his dinner.

I waited for someone to say something but they didn't, not even when I told Josh it was time to go down and get his scout shirt on.  Abby and Matt finished playing and asked if they could go outside.  Why not?

Josh went off to scouts and I put the away the food.  An hour passed.  The kids came in from outside just before Andy arrived home at eight.  Then it came...

"Mom, we never had dinner".  I calmly explained that I had eaten dinner but they never came to the table when I called them.  I offered them bread and butter since dinner was put away and it was bedtime.

That did not make them happy but they finally ate and we got them to bed.

This is a fault of mine.  Often I would rather play the martyr than try and work things out calmly.

It's something I should work on...however, in my mind I'm justifying it by telling myself that it's teaching them a lesson so that they will obey the next time.

We'll see how well that works out for me :)

A New Lease on Life!

I truly love my children!  I really do.  And I love being with them, but after today I have realized something.  (I guess I've realized it before but it was reconfirmed today)

I am a much better mother when I have had sufficient time to myself.

I know, it sounds selfish :(

But when I have time to get a bunch of things done on my to do list, including; taking care of myself, cleaning the house, spiritual upliftment etc... I am more at peace, more patient and calm and willing to spend time having fun with my children rather than just nagging them to get their "stuff" done.

I know this is nothing new but I absolutely loved having that feeling today.

These are some of the things I checked off my to do list today:

 I went for a run after I got the kiddos off to school.  I only went about 2.5 miles but it's been so long since I've done any at all.  I was completely out of breath but it felt so good.

I came home and showered...yes, showered! (that doesn't always happen for me)  That felt great too!

Then I spent some time reading out of each of these books/magazines.  I don't remember the last time I sat down with plentiful time to study the scriptures and words of the prophets and not been interrupted by a sweet child :)  It was good for my soul.

After I was sufficiently spiritually full I went to the kitchen and made a keto recipe that I've been meaning to try for one of Ben's snacks.  They were almond "crackers" and you can see them stacked up on the left hand side of this pic.  It looks like I've got 1/2 of ten other meals premeasured and ready to go in the fridge as well.

With a little bit of time left before Ben got home I sat down and started working on an information sheet about Ben to educate and instruct his teachers, district nurses and paramedics in case of an emergency.

I even stuck in a movie that I had never seen before as I tapped away on my computer.

The movie happened to be something other than princesses, Disney or Star Wars :)

Ben came home and told me all about his day at school with a few signs, some pointing and the word "me!" that he's been using an awful lot lately.  It's so cute and I love that he is really trying to communicate with me.  It surprises me how much I am actually able to learn about his day.

His teachers say they love him and he's doing really well.

His speech teacher sent home a bunch of vocabulary pictures and asked for us to have him practice pointing to the requested picture when we set two in front of him.  I was amazed!  He got 16/20.  I did the four that he got wrong a second time and he got them all right.  It was pretty cool and Ben loved giving me high fives after he got each one right.

After I got the boys fed and Ben down for a nap I felt like I was on a roll so I went ahead and cleaned my dining corner that has had fundraising stuff piled high in it for over a week now.

Now it's just downstairs stacked up waiting to be used again in a couple of weeks.

I got dinner in the crock pot!

I have been so bad lately about dinners.  We've been eating out more than usual or having really simple meals.  I was so spoiled a few weeks ago because sisters in my ward were bringing dinners in at least twice a week.  It was so kind and so greatly appreciated.  It was kind of at a hard time with all that was going on with Matt and Ben and Josh and stress and our trip to Minnesota.  So they watched out for me and I am so grateful.

Anyway, I hope to be much more on the ball now.

I plan on doing a lot of crock potting :)

Any awesome recipes out there that I should be aware of?

After dinner was taken care of I finished Ben's info sheet, responded to some emails and sat down and read my "fun book" for a minute before the big kids got home from school.  

I was in such a good mood!  It was very noticeable to Andy when he got home from work.  I felt good about myself, what I had accomplished and my interactions with my kids.

There's still a lot of things that I'm still behind on...mainly cleaning...but my list is getting whittled down.  As long as I do what I can each day I will try not to stress out about it.

I know not every day will be this productive...probably most days will not.  But at least I know the potential and opportunity is there...and that feels good.

oh ya, I folded some laundry too :)

Swiss Days

Thursday evening Andy and I took the kids to the Brigham City Temple open house.

  

It was lovely.  Ben kept pointing to pictures of the Savior and doing his sign for "Jesus".  He got so excited about each one.  He also loved the chandeliers.  My favorite was the ceiling in one of the sealing rooms :)

The center circle was a hand painted, beautiful baby blue background with peach blossoms outlined in gold.  It was quite striking.  

The kids were well behaved and I think it was a pleasant experience for all.

Afterward we went and got some dinner and ate in the car...mainly because of Ben's diet.  It's hard to go into a restaurant and have him see all the food he used to enjoy.  In the car we can keep him in his seat facing forward while the kids sit behind him and one of us adults sits in front of him while the other one feeds him his own food.  I changed my clothes in the restaurant restroom and then we met up with Andy's sister and brother in law and co.  I hopped in the car with them while Andy drove the kids home.  We were off to Park City so we could venture out the next day to Swiss Days in Midway.

(Andy and the kids had school the next day so they came down Friday evening.)

It was strange being at my in-laws home without the rest of my family.  I was able to relax though :)

After a pretty good night's rest (I woke up a couple of times in the very early morning...and later found out that they were about the times that Ben had two different seizures.  Poor Andy), my mother in law and three sisters in law drove to Swiss Days which is basically a gigantic craft fair among other things.  I had never been before and was so excited!

Midway is a beautiful little community in a lovely green valley with a Swiss heritage.  Some of the buildings are even in the Swiss style.

Up to 100,000 visitors come each year over the course of two days.  Hence, it was extremely crowded, even on the least busy of the days.  There were moments where you were stuck in traffic and literally couldn't move any way to get to where you wanted to be.  It was crazy!  The weather was beautiful though.  It was over cast most of the time and we even got a little sprinkle (yes, to me that is beautiful :).  We did have hot sun for about an hour but the rest of the day was extremely pleasant.

I absolutely loved all the hand made goodies at each booth.  There were some extremely unique and clever items.  I did end up buying quite a number of small things.  Luckily, I had brought a large bag with me to hold all my treasures.  

I loved the style of these beautiful paintings!  Oh how I wish I could paint!

We enjoyed a lunch of Navajo tacos and scones.  Yum!

I loved this guy's hat...a piece of garlic with a Swiss flag.  He was demonstrating a garlic press or something.

 We were there 5 or 6 hours before we felt like we had seen everything.

We had so much fun and I really hope that we will be able to make it a tradition for us gals each year.

Andy and the kids came later that night and the next day was a super duper celebration for Andy's grandpa's 90th birthday.  Many people came to wish him well...most of them I didn't know but it was fun to meet new people...especially some of Andy's aunts and uncles that I had not met yet.  As usual, the kids were pretty much oblivious to everything except playing with their cousins.

I wish I had taken some pictures of this event :(

We drove home late that night after the partying was over and spent Labor Day putting our house and yard back in order after much neglect over the past few weeks.  It feels good to have things in place again for the most part.  Tomorrow starts my "mornings to myself".

I'll have to let you know how I fare :)

one Last Hurrah and the Long Haul

Josh and Abby started school last week...

I made note that last year in these pictures Abby had a black eye.  This year Josh is on crutches...and Ben has a black eye :)

Their teachers seem super nice and they're excited to get the year under way.

Ben started on Monday...

Signing "Bus"

There's been some stress with that...having my little three year old "baby" with serious health issues being away from me for three hours a day...but he loves it and I think it's really good for him (and me).  I just need to learn to keep my cell phone on me at all times in case of a seizure and try and stay close to home.  We did work out a plan though if I'm not available.  Hopefully we will rarely have to implement it.

Matt didn't start kindergarten until today...

Handsome Kindergartener!  He picked out his clothes himself :)

Cool Dude!

What a character!

I made him be serious for one more picture :)

... so we had three days of just the two of us in the morning.

We took one of those mornings and did what ever he wanted.

Since the Fun Park and Bowling weren't open until almost the time Ben comes home we ended up buying new backpacks, playing tennis and then getting some ice cream.

It was fun watching him try and get the tennis balls in his pockets.

We had about an hour to play but he was running around chasing balls so much that after 30 minutes he decided it was time to go get the ice cream.

This guy is our athlete.  He was watching the sports channel on the t.v. above us as we ate and commented often on what was happening.  He even got down and demonstrated some of the moves he was seeing :)

It was great to have some one on one time with this boy.  We had a grand Last Hurrah morning!

So....I guess we're in for the Long Haul with the diet.

It started working!?...?! :( !? :) ...!

I can't decide how to feel about this.

Last week I started noticing long periods of little or no myoclonics.  I mentioned it to Andy and we both started keeping a close eye on it.  Within a few days there was no denying it.  I had to admit that it was working.  I was so relieved after the conference, thinking that we only had a month left and then the week after we got home things started changing.

 Part of me is really thrilled.  I can't tell you how nice it is to see my little guy running around (chasing his great grandma in circles around the kitchen and giggling to be exact) and not falling down and hitting his head....how nice it is to give him a bath and not once have him face plant into the water or fall sideways and get a big bump on his head from hitting the bathtub.  It's been a long year and a half of constant myoclonics.

The other part of me looks down a long road of possibly two years or more of this time intensive, strict, family affecting and emotional diet and wonders if I can handle it.  If I can, it will be well worth it if we continue to see the benefits we have the last week.  It has gotten a bit easier now that we're in a rhythm but not so much easier that I can look it in the face and smile.  Maybe some day :)

Really, I am happy though.  Finally!  Finally something is working!  After going through seven different meds and various other therapies and experiments over the course of almost three years with absolutely no benefit, it is amazing to actually have something change the seizures in a positive way.

He's still having them...especially in the mornings it's just like old times but throughout the rest of the day they are greatly diminished.  He still even has hard ones...Sunday night he face planted and got a bloody nose...but they are definitely fewer.

We haven't seen one of his "staring"/partial complex/focal seizures since we initiated the diet either.  Those weren't our real concern though but it's nice to knock another kind out as well.  He's still having big tonic clonics...we found him in his crib the other morning having one...but we're keeping an eye on those also to see if they are fewer as well.

That's my update for now...I've got to go weigh some hot dogs, ketchup and cream :)

Running for Ben 2011

As soon as we got Ben's diagnosis in June of 2011 I had a desire to do something...anything to help.

Dravet Syndrome is rare and under researched.  I had read that Dravet.org would set up a "Fund of Hope" in your child's name.  Once you raised $30,000 they would use that money to help fund a worthy research project.  I didn't know what kind of fundraiser I could do.  The thought was a bit overwhelming but then an idea came to me.  I contacted a very kind neighbor of mine who was on the organizing committee for a local race held each year.  I asked if we could use their race as a vehicle for our fundraiser.  I was surprised and quite relieved when he gave me the go ahead.

Matt and Ben with our banner

For a couple of weeks I went around to businesses in town and asked for donations of prizes for a raffle.

It was one of the hardest things I've ever done!  I was nervous to put myself so out there and vulnerable to rejection.  Some did reject me while others gave somewhat grudgingly or neutrally and there were just a few who were very gracious and even showed interest in Ben.  I have to mention by name Firehouse and Great Harvest.  Those two went above and beyond and were so kind.  (I try and support those two businesses as much as I can now :)

A friend of a friend, Tania Finn from (tk design), was extremely generous and donated her time and talent to design a logo for us.

My cousin's husband wrote a press release for us and we ended up in the paper!

We made stickers, fliers, t-shirts/tech shirts and a banner.

The idea was to buy a sticker for $2 and wear it during the race.  Each sticker purchased gave you a raffle ticket to put in any of the prize boxes.

 My other goal besides raising money was raising awareness.  That's where the fliers came in.  They had info about Ben and Dravet Syndrome as well as the logos of all the companies that donated.  We tried to talk to as many people as we could the night before the race when they came to pick up their packets.  This is also when they purchased stickers.  This was hard work as, for most of us, it was out of our comfort zone.
The next morning, the morning of the race, we continued to sell stickers until most of the runners had come in and then we drew the winners.

I had so many helpers from the very beginning.  From the people that babysat my kids so I could go around to businesses to the designer to all the volunteers who came and helped during the actual fundraiser and most of all my family...immediate and extended.  I was so grateful for everyone who was willing to help!

I actually was running the 1/2 marathon so Andy took pictures of the kids (especially Josh) running laps around our backyard in support of the fundraiser.  It was precious :)

This is not the greatest picture: post race at our booth with Abby's black eye and most of us not looking at the camera, but it's the best we got.

There are actually two races associated with the "Top of Utah".  So when we got done with the 1/2 in August, we turned around and did it all again 3 weeks later for the full marathon.

I saw Sherri Dew among the spectators and grabbed her for a picture.

 With those two events, along with spending 8 hours on a Saturday in front of a grocery store asking for donations, we raised right around $5,000.  I was quite pleased.  I hadn't known what to expect but I was happy with the outcome.  (Later I found out about a family that has been able to raise $30,000 at one event!...but that's okay...I was still happy with what we were able to accomplish :)
Dravet.org featured us in their newsletter here.

I'd say the best part of this experience was connecting with other people.  Everyone has a story.  We met many people who were in one way or another linked with epilepsy.
And something that was driven home to me the day at the grocery store is that you can't judge a book by it's cover.  People that we would never expect to donate to our cause were some of the most generous...often, again, there was some story or connection with epilepsy in general.

I learned so much about so many things from the whole experience.
There was a lot of follow up, loose ends and thank yous to be written during the couple of months afterward but it was all worth it.  So many generous people made it a very positive experience.
The question is, can I do this for the next 5 years to raise the amount we committed to?
We'll see :)
The nice thing is that there's no deadline.  We can take as long as we need.
The sooner the better though...time is ticking for our little Ben.