Pirates, All Night Party with EEG, Famous, Clinton Days, Family 5k, Fun

The last week and a half have gone by fast to say the least.  Here's a highlight of what's gone on: 

 Clinton Days was a week and a half ago.  Our family loves to participate in the activities especially the annual 5k race.  This year when it was time to sign up Josh begged Aaron and me to see if we could both run it with him.  He also talked Matthew and Daniel into running it, too.  As it got closer to race day I would try to take the boys out running with me to build up their endurance.  Josh did great, but Daniel and Matthew struggled a bit and let everyone around us know.  Wow, who knew the amount of complaining those two could do?!  It's not like we forced them to sign up, they asked us to sign them up for the race for crying out loud!!  We have a 3 mile loop around our house we like to run on and so I would take the boys with me.  Oh my goodness you thought I had cut Daniel's arm off by the way he was screaming after the first time I took him out.  However, they all got better and increased their endurance so by the time race day came they weren't complaining as much.  I was worried about Matthew because he really didn't practice too much beforehand.  However, he beat us all.  When the race started he took off running really fast.  I thought he'd tire out, but he did great.  Whenever he saw us getting closer to him he took off running really fast again.  He thread his way through all the runners by yelling as he passed them, "HIGH SPEED TRAIN COMING THROUGH!!!"  I am sure all the runners thought he was an interesting kid....  Matthew and I finished before the rest of the family so I was able to take an action shot of Aaron, Josh and Daniel as they were finishing.  They did great and Daniel wasn't complaining or yelling either which was an added plus!  This was Josh's fourth year completing the race!!  Wahoo Josh!!

Here's the sweaty family post race:

Our friends the Einzingers were kind enough to watch Sarah and Noah while we were able to run the race.  THANK YOU!!!!  Sarah and Noah were excited to have a sleep over (since we had to check in at the race start by 6 am and no one ever wants to wake up on purpose that early) so we dropped them off the night before.  It was a win win for everyone.

After the race we picked Sarah and Noah up and then went to drop Josh off on his parade float for the parade that started at 9 am.  We had saved our parade spot the night before so we got a pretty good spot.  We watched the parade with the Einzingers which was really fun.

Josh was in the parade because he had been doing a theater summer camp and they were performing their pirate play Peggy and the Pint Size Pirate that afternoon.  Josh hooked us up with quite a few handfuls of candy.  It was awesome to see him in the parade.  He is leaning over the cab of the truck with a bandanna on his head:

I love this guy on his tractor.  He is in all the local parades and is always wearing his Uncle Sam red white and blue hat.  It's fun seeing him every year in multiple parades.

After the parade we took Josh home to get him changed for his play.  He played the part of an old, wise pirate.  To make him appear old they sprinkled baby powder all over in his hair to turn it white.

Josh did great in the play!

Here's an action clip of Josh during the play:

After the play we wandered around the area and looked at the different displays.  That's when Matthew spotted the train you could ride.  Aaron is quite the push over and paid to let the kids have a fun train ride around the park.

They had a photography contest that I entered and won 3rd place in.  Wahoo!

It was a busy, but a really fun day all around.

Matthew had a really exciting experience last week.  He started a summer program for kids with disabilities in the middle of June and loves it.  They do a lot of fun activities throughout the community.  They all meet up at a local park for a few hours before they start their activities.  Well this park happens to be right next to some active train tracks which Matthew loves.  As soon as I drop him off at the park he checks in, drops off his lunch and then runs over to the fence by the train tracks to watch the trains go by.  Whenever the trains go by whether it is a Union Pacific freight train or the Frontrunner passenger train he waves like a madman to get the conductor/engineer to blow the whistle and he did this every day.  Well on Thursday July 17 an actual Union Pacific freight train stopped and the conductor/engineer got out to see Matthew.  He gave Matthew a safety vest, Union Pacific gloves, sunglasses and a lantern.  Oh Matthew was so excited!!  His summer program leader sent me this picture right after it happened:

Well the news got wind of the story and decided to make it a feel good piece.  They came out the next day and interviewed Aaron, me and Matthew for the story which they aired that night on the news.  Here's the link to the original newscast that aired on Friday July 18 at 10 pm:

http://www.ksl.com/?nid=1286&sid=30769508

The Deseret Newspaper picked up the story and ran it in the Monday edition of the newspaper.  Here's the link to that story:

http://www.deseretnews.com/article/865607299/Train-makes-special-delivery-that-Clinton-boy-will-never-forget.html?pg=all

We picked up a copy of the newspaper, too.  It had Matthew's color picture on the front and the rest of the story inside the paper:

It was really neat all to see so many people excited about that wonderful act of service that conductor/engineer did.  

The story spread pretty quickly and was soon posted on quite a few websites including the Autism Speaks website as well as LDSliving.org.  (I have no idea how anyone found out we were LDS either which is crazy--not that it bothers me, though).  The story went out far and wide.  Our neighbor stopped by and told us that her mom who lives 30 miles south of the Canadian border in Montana even read about the story.  That's awesome!!

Here's the link to the autism speaks website:

http://www.autismspeaks.org/news/news-item/train-conductor039s-surprise-boy-autism

One of the most surprising happenings was when we were contacted by the Ellen Degeneres Show wanting to do a piece for their website.  They called and interviewed me over the phone and wrote up this article that was posted on her website:

http://www.ellentv.com/2014/07/23/conductor-stops-train-in-its-tracks-to-greet-biggest-fan/

If you were ever wondering this is what your caller ID looks like when the Ellen Show calls--which was pretty crazy, this was it:

  Who knew it would be that big!  I am so grateful for this engineer/conductor and what he did for Matthew!!

After the story aired on the TV we were contacted by a big train enthusiast from Florida.  He gave us a link to a camera he had set up so he could watch a really busy train intersection in Georgia.  This intersection has at least 100 train crossings a day.  We pulled up the link and Matthew sat and watched it for a long time.  If anyone else is interested here's the link (it doesn't play on a phone, though, only on a computer):

www.virtualrailfan.com

He also is a developer of a train computer game where you can build your own rail system.  It is kind of like the Roller CoasterTtycoon, but only for trains.  He is sending us the latest edition so Matthew can play with it.  What a nice guy!

We were also contacted by Union Pacific.  They have a big engineer training center located at Salt Lake Community College where they train all the Union Pacific Engineers on how to run a train.  They let us come tour the facilities and try out the virtual train engineer program.  The kids all got a turn at driving a train on an actual simulated rail line located up in Idaho.  Matthew was so excited.  They played around with the weather so Matthew and the rest of the kids got a chance to drive the train during fog, rain, snow, hail, nighttime, etc.  They loved it!

These are the actual boards that regular train engineers learn on so the controls are as real as you can get next to the actual train car themselves.  It was really neat to see how they worked!

They had two systems up and running so after they showed them how to drive the train each kid got a chance to try it out.

When it was over they presented Matthew with a really neat Union Pacific pin and a certificate making him an honorary train engineer.

It was an awesome experience!!

Here's the certificate and they even made it out to Train Conductor Matthew which he LOVED!!!

They sent us all home with goodie bags filled with prizes.

The kids have all insisted on using their own Union Pacific mugs for their drinks.  They also are excited about their own train calendars, book marks, train coloring books, Union Pacific ear buds, etc.  We are so grateful for such a neat experience!!

They even gave Matthew his own train hat which he insists on wearing every where we go because it has a train on it and he needs to let everyone know that he loves trains.

Here's the decked out excited boy with his official certificate, train hat, train safety gear in front of his train mural.  He's been in HEAVEN all week long!!

There have been so many awesome people helping us this past week.  It makes my heart happy and my eyes leaky from all the wonderful things people have done for us just to help Matthew out.  

We even made the local paper the Standard Examiner this morning:

There has been more that has happened, but I will save that for the next blog post.

In other happenings we took a trip out to Trafalga for a fun family day minus Aaron since he had to work.  The kids all wanted to do the rock climbing wall and they did great!  Here's Daniel Sarah and Josh taking their turns:

Noah even got in on the action and did pretty well:

We did a few rides:

Some indoor black light mini golf:

Matthew did the climbing wall quite a few times.  He made it to the top almost every time, too.  Good job!!

More rides as well as laser tag, go carts, water boats, etc.

It was a really fun day!!  

The other day Aaron brought me home a surprise Sonic drink because I have been having insomnia problems lately and needed a caffeine shot.  I had taken one sip before I had to run and go potty.  That's when Noah took advantage of the moment of his lack of supervision and went for my drink left on the kitchen counter.  He grabbed it, but accidentally tipped it over and spilled it all.  :(.  He got sent to seat away on the stairs while it got cleaned up.  It only took a short time to clean it up, but in that short time he had fallen fast asleep in the most uncomfortable position on the stairs.  He must have been really tired, too.  

 Daniel is getting closer to overcoming his dairy allergy.  He is up to 30ml of milk twice a day and has decided he does not like the taste of milk--the stinker!  The doctor heard that he didn't like it and told us we could flavor it with chocolate syrup if that would make it easier to take.  Daniel was all over that suggestion.  The only dairy free chocolate syrup is Hersheys which is nice because it is easy to find.  After making it chocolate milk we don't have any problem getting him to take his milk now.

 For Pioneer day Aaron had to work so I was on my own with the kiddos.  We had an interview with the Standard Examiner reporter earlier that morning for Matthew's train story.  Later that afternoon we headed over to see a matinee movie at the dollar theater.  Since it was the dollar theater I let the kids pick out a treat and they were all thrilled!  I think all the candy was eaten before the movie even started, but they thought it was great. While we were waiting for the movie to start Sarah leaned over to me and pointed to another mom.  She then told me, "Mom I wish you as pretty as her!".  Gee thanks a lot Sarah!  I can't get upset, though, because the other mom was dressed really nicely, her hair was done very pretty and she had a lot of makeup on, too.  Me on the other hand had no makeup on, was dressed very casually (yoga pants), and was trying to herd 5 kids around.  I didn't look my best, but I had a few good reasons which I just mentioned.  However, I bet I was a lot more relaxed and comfortable than she was and that's all that matters, right?!  Here we are waiting for the movie to start:

 That night Josh and I got to have an all night awake party.  Josh has been seizure free for the last two years as far as we know.  It's hard to know for sure since he has 90% of his seizures at night and seeing as I need some sleep sometimes, too, so I can't hold a vigil over him all time.  So we can't say for sure if he has been seizure free, but we think so.  That means he might be able to be weaned off his seizure medicine if an EEG comes back clear.  That meant we had to get a sleep deprived EEG to make sure there is no seizure activity going on.  Sleep deprived EEGs are not fun.  Josh has to stay awake all night long to lower his seizure threshold which means I had to stay awake all night long with him to make sure he wasn't sleeping.  We were able to stay away til about 3 am until we both started struggling.  We then headed over to Walmart to do some shopping.  We got quite a few weird looks from the Walmart stockers, but what can you do?  We had to stay awake and Walmart is one of the only places open 24 hours.  After Walmart I took him out to eat at IHOP.  Here's my 4 am bleary eyed breakfast date:

After breakfast we came home and went walking around the neighborhood to keep us both awake.  We ended up getting 3.5 miles in before it was time to leave for the EEG.  His EEG was scheduled for 8 am.  Now this is where it gets a little complicated.  I had to make sure Josh stayed awake all the way down from our house to Primary Children's Hospital in Salt Lake, but I can't safely drive and take care of that.  Thankfully Grandma T was able to come and help me out while Aaron stayed back home with the other kids.  She helped keep Josh awake on the drive down so I could concentrate on driving (especially since I was quite sleep deprived, too) and not on Josh to make sure he wasn't nodding off which he tried to do multiple times.  We made it to Primary's and Josh was still awake--Wahoo!!  Finally they called us back to get the EEG started.  Here's Josh getting all the EEG leads placed on his head to monitor his brain waves while he slept for 40 minutes.

Here's my zombie as he referred to himself:

 Here's a snapshot of his ongoing brainwaves:

 After getting him all set up with the leads all over his head they let him sleep in a dark room for 40 minutes while they monitored him.  The point of having him sleep deprived is to lower his seizure threshold to see if he would have breakthrough seizure activity over his medication.  At the end of his 40 minute sleep they flashed lights at his eyes at different frequencies to see if that would trigger a seizure which I don't think it did, but who knows because the tech didn't share any results with me.  If his EEG is clear, which I won't find out the results for a few more days, we can try weaning him off his medications.  However, it makes me nervous since the last time we tried weaning him off his meds about 6 years ago he started having seizures again within 6 months.  Also last time we had a sleep deprived EEG done about 4 years ago it resulted in Josh having back to back seizures that were severe enough they couldn't get them under control at Mckay Dee hospital and had to transfer him via ambulance down to primary's.  That was so scary!!  It took 4 days in the hospital to get them under control and another few months to get them to stop.  Anyway, I am nervous about what will happen next because last time he was so hard to get his seizures under control.....Hopefully, it will all work out the way it's supposed too.....

The other day I went to check on Sarah before I went to bed and found her like this:

I feel sorry for her husband because she has turned into quite the bedhog.  What a funny girl!  She makes sure she uses her full bed every night.

Also I put curlers in Sarah's hair Saturday night.  Aaron kept referring to her as Medusa because that is what her curlers make her look like.

Oh well it was worth it because her hair was very curly and pretty the next day.

Freebies, Daddy's Home, Stuff

The kids love it when Aaron gets home from work.  Sarah and Noah like to hide and scare him and then when he sits down they like to pile on top of him.

 The other day Josh and Daniel caught me in a weak moment at the store.  They searched through the bin of Cokes and found all of our names and then begged me to get them.  I was a sucker and caved, but we all enjoyed sharing a Coke with each other :).

 July 11 was a free food kind of day.  First we started out by celebrating Customer Appreciation Day at Chick-Fil-A.  If you dress like a cow you get free food.  We only wore masks so we only got a sandwich, but it was still good.  My printer wasn't working so we had to improvise and make cow masks from paper plates.  They weren't the best, but they got the job done and we were able to eat breakfast.

 After that we stopped by 7-11 to get our free Slurpees.  I am glad to say that no one got 'slurped' either.  That's always a good thing.  I was mean and wouldn't let the kids eat their Slurpees in the car because I didn't want a huge sticky mess.  We enjoyed our Slurpees in the rain...but they were still yummy.

 Saturday July 12 was the free day at the Children's Treehouse museum in Ogden.  We don't go here too often so everyone had fun looking at everything.  We started out with the rodeo/horse riding exhibit.

 Then there was a big map of Utah where you could hear different facts about each county.

 We hit the school room where Daniel tried to be the teacher.  That didn't go over so well.

 However, while Aaron and I were doing some crowd control Noah managed to write his own name without any help.  However, if you ask him what it spells he insists that N-O-A-H spells Bubba.

 There was a parachute drop area with a small target on the ground you tried to hit with the parachutes.  We didn't have very good aim, but it was fun trying.

 Here's the all important Oval Office:

 We stopped by and did a craft as well:

 Then we hit one of the dress up areas.  Sarah insisted on being the Queen and Noah just did what she said because he's a happy go lucky guy.  What he doesn't realize is that is a skill that will greatly help him in his future roll as a husband....hahaha.

 Josh, Daniel, Noah and I built an archway that actually stayed up when we let go of the last block.  Wahoo--success!

 Sarah found a tracing table and she spent a ton of time there.  She loved it.

 Here's one of her 'tracings':

 They also had a Sword in the Stone replica that Noah and Daniel tried to pull out the sword, but were unsuccessful.

 The second dress up area was fun.  Noah tried a lot of the costumes on.  Here's the astronaut:

 The chef:

 Daniel tried being an astronaut as well:

 Last part of our visit we had to do the participlay they had going on.  It was a play that required a lot of help from the audience.  They performed the play Too Much Noise.  Daniel got to be a rooster:

 Josh revelled in being the main character:

 After leaving the Museum we were right next to the redone Ogden Temple so we decided to take a walk around it.  It has turned out so beautiful!  I can't wait to go to the open house in a few weeks to see the inside.

 We love to see the temple!