Sleep Deprived EEG, Sweet 16, Bryce, Zion, Snow Canyon, St. George Family Vacation

Wow I am behind.  A LOT has happened since my last post so here is a not so quick recap of our family's last 11 days:

A week and a half ago it was finally time for Josh to have another sleep deprived EEG.  He has gone over 2 years without having a seizure which is awesome, but it also means there might be a chance to wean him off medication again.  In order to try and wean an epileptic person off medications they have to be seizure free for at least two years and have a clear EEG test.  An EEG (Electroencephalogram) test measures and records the electrical activity of the brain.  The point of the sleep deprived EEG is to lower the person's seizure threshold and bring them to a brink of a seizure to see if the person will show seizure activity or not and measure the brain activity.  In short that meant Josh and I got to have an all night stay awake party--trust me it wasn't as fun as it sounds--haha!  Josh couldn't have any sugar or caffeine to help him stay awake, but luckily that didn't apply to me--haha!  Anyway, we started out by doing a Star Wars movie marathon.  He was doing great with staying awake up until about 1 am when he started really struggling to stay awake.  It is easier to stay awake when you are moving so we went and filled up both cars with gas since they were both on empty.  Then we went to do some grocery shopping at Walmart--thank goodness for 24 hour stores!!  Anyway, we wandered the aisles and leisurely picked up the groceries I needed.  We got some pretty weird looks since we were the only ones that weren't employees in the store.  When we were done with Walmart it was about 3 am.  We came back home and Aaron was kind enough to relieve me so I could get a couple hours of sleep.  He took Josh out for breakfast at IHOP (again thank goodness for 24 hour businesses!!) and you can tell Josh is TIRED!!

They came back home and then it was time for us to leave to head down to Primary Children's Hospital for the EEG.  Poor Josh--he kept falling asleep on the way down to Salt Lake.  I had to keep elbowing him and slapping him to wake him back up.  Luckily, we made it in time for his appointment.  Here we are waiting to check in at the Neurology desk with some sweet bloodshot eyes:

 Of course we couldn't sit for too long since Josh would doze off.  We walked around and looked out the window of the view of the Salt Lake Valley:

 Finally they called us back.  Josh crawled up on the bed and barely fit.

 They have to put a ton of electrodes all over Josh's head and he kept nodding off through the whole electrode placement:

 After all the electrodes are placed they wrap up his head to keep them in place so he looks like a mummy only from the neck up, though.  The purpose of the EEG is to bring the person to the point of a seizure.  They started out by having him hyperventilate which can trigger a seizure in some people. Poor Josh had to blow this pinwheel straight for 3 minutes.  He was pretty light headed at the end, but  was okay.

 After that they turned out the lights and let him sleep for 30 minutes.  A person is most likely to have a seizure during sleep especially if they are over tired which Josh was.  At the end of the 30 minutes the tech came in with a strobe light and flashed the light at different frequencies since some flashing lights at different frequencies can cause a seizure.  Josh did great.  After that we were done with the EEG and were able to come home.  Josh was fast asleep within the first three minutes of the ride home--poor guy.

 Thankfully I got a call from the pediatric neurologist today saying that Josh's EEG was clear and she would discuss the weaning of medication schedule with me at his appointment with her next week.  I am so nervous.  This will be the 3rd attempt at weaning him off his meds.  I am excited, but also scared because as we wean him off we just wait and watch for him to have a seizure which is nerve wracking.  It hasn't worked the previous two times, but maybe the 3rd time is the charm...This will be his last try to wean off medication, too.  If this time doesn't work he will be on meds for life which isn't the end of the world, but something to think about.  Luckily, the meds do work for him which I count my blessings for since about 30% of people with epilepsy medication doesn't work.  Anyway, he will be driving soon and although that is scary, I want him to have that experience and if he is actively having seizures that makes driving not possible for him.  I will find out more next week at his appointment.  Keep your fingers crossed and Josh in your prayers please!!

Last Thursday I had big meeting with Matthew's Summer Program Staff, his Disability Support Coordinator, and one of the State disability program managers.  As Matthew ages they had to determine his needs and the supports to help with those needs.  In order to do that we have to all get together to discuss in detail Matthew's disabilities, behaviors, goals, etc.  It was a two hour meeting that I ended up having to attend by myself since Aaron couldn't break away from work to go with me.  It was a really depressing meeting only because it dealt with all of Matthew's problems in detail.  I know the meeting needs to happen, but it was really hard to sit through.  Thankfully, it only has to happen every 5 years so I have 5 years to forget how depressing it was to attend before I have to do it again.  Don't get me wrong I am grateful we have the supports and programs we have for him, though.  I am glad we have an idea of what is available for him because he will age out of the school system when he turns 22 which is scary since it is only 6 years away--doh!!  Hopefully, he will continue to progress and be able to accomplish a lot as he gets older.  Sigh, the things we have to do as parents aren't always easy, but I try to tell myself that hard things like this make me appreciate the easier things that much more.

Anyway, Saturday we celebrated Matthew's birthday a day early by going out for lunch at Pizza Pie Cafe.  We invited G&G T to come along with us.  I really love a buffet because the kids all get to eat what they want and I don't have to clean up the mess--it is a win-win situation!

 After lunch Matthew opened his presents and gave G&G T hugs.

 We then came back home and had some birthday cake.  Matthew requested an ice cream cake so that's what I made.

 The biggest thing Matthew wanted for his birthday was to go on a vacation.  Since we hadn't had a family vacation this summer we decided to go on a short trip to St. George.  We left Sunday morning and got back home Thursday night.  It was a fun trip packed with all kinds of activities that kept up hopping the whole time.  Here's our trip day by day:

VACATION DAY #1 Bryce Canyon.

We headed out Sunday morning at 8 am.  We couldn't leave sooner because that's the time the vet opened that was going to kennel Sophie while we were gone so that was our starting time.  I must say I do miss the space of the Suburban, but with a roof rack and luggage bag we were able to fit everything we needed including the kids with their pillows and blankets:

On the way to St. George we stopped off at Bryce Canyon and hiked most of the day.

It was a bit chilly and we even got rained on, but it still was a beautiful place to hike.

 We loved seeing all the Hoo-Doos and different rock formations.

 There were arches on the hikes you got to walk through.  Josh had to remember to duck so he wouldn't hit his head, though:

 Here's a rock formation that was supposed to look like Queen Victoria.  Some of us were able to see the likeness while others not so much:

 You can't hike a canyon without Josh trying to do a silly pose of some sort:

 For whatever reason hiking makes Noah quite philosophical.  He was talking Aaron's ear off all about all kinds of different things.  He's a funny kid!

 

As it got late into the afternoon we had to leave in order to check in to our Airbnb rental.  Amazingly we were able to get a cheap condo rental that fit 10 people with real beds for cheaper than a hotel.  We hadn't done Airbnb before, but it was a positive experience.  After checking in and getting everyone settled we went to bed.

VACATION DAY #2 Kanarraville Falls, Ghost Town of Grafton, Swimming

We got up early the next day to head over to do a hike I really wanted to do.  It was called Kanarraville Falls.  It was about a 5 mile hike through a slot canyon and it was supposed to be amazing.  Let me tell you it really was amazing.  This hike ended up being Aaron and my most favorite hike this whole trip.  The beginning is kind of boring because you walk up a dirt road for a bit, but then it gets good!  You have to walk a lot of the trail in the water.  This was our first water crossing of the trail.  I have no idea what I am saying in the picture, but I am sure I am using my 'Mom' voice by the looks of things--haha!

 Matthew isn't a big fan of hiking, but he did great the whole trip.  Aaron and I kept giving each other surprised looks because in the past he always complained the whole time we tried to do any hike, but for whatever reason he didn't complain at all.  It was pretty awesome!

It was a slot canyon you would weave in and out of.  Here's Josh posing in one slot canyon crossings:

Luckily, everyone had water shoes which made it better to cross the stream with:

 Deep into the hike you have to climb up with ladder thing.  It made me a bit nervous to have the kids climb up it, but they did great.  I climbed up after all the kids were done:

 After climbing up the ladder you then had to climb up some slick rocks to find the trail again.  Luckily, Josh went first and helped all the kids up that part.  Josh is in the red shirt and helping Matthew, who is wearing a blue shirt, up the rocks.

 Aaron brought up the rear on the ladder:

 As you got higher on in the trail there was a natural water/rock slide you could go down.  All the kids were really excited to try this except Noah.  He was nervous, but we finally talked him into going down.  Unfortunately he went down the wrong side of the rock slide.  He chose the side that didn't have a slide at all, but was about an 8' free fall into an area of water that was over his head.  It all happened in slow motion.  I saw he started going down the wrong side, but I was too far away to do anything.  It took Noah about 10 minutes to resurface--just kidding!  It only seemed like 10 minutes, but in all reality it was only a few seconds until his head popped back up.  He was pretty traumatized by the whole thing which I can't say as I blame the poor kid.  While I was consoling him the rest of the kids kept sliding down the rock slide again and again.  They thought it was pretty great.  Here's Matthew who shocked us by sliding down without us even asking him to try it--wahoo Matthew!!

Here's Josh at the top of the slide, Sarah (on the slide), and Daniel at the bottom of the slide:

After much consoling and loves I talked Noah into trying the slide again.

 He would only go down the slide if he rode in my lap.  Fair enough so here we went:

 Aaron even took a turn:

This hike was so much fun.  It would be in one of my top 5 hikes ever going on it was so fun!  If you ever get a chance to hike this one I would take it!

After hiking back out we then headed over to Grafton which is a ghost town.  I have always wanted to visit a ghost town so luckily everyone else was on board to go with me.  Grafton was settled in 1859 as a cotton growing community.  It didn't last very long since there was a bunch of flooding and silt that clogged up the irrigation ditches.  The residents moved and resettled in a different area in 1866, but left behind their buildings.  There is a school/church house, a couple of residential homes, a cemetery, a barn, an outhouse, etc. 

 I was surprised that the buildings were open and you could walk through them.  We got to check out the cellar of one of the homes:

 In another home you could walk around the main level and the upstairs.  People seemed to be a lot shorter back then as Aaron and Josh had to watch their heads as we walked around inside:

 Of course, the boys made sure we had to get a picture of the outhouse:

 Here's another view of the church/schoolhouse:

 They even had a swing in a tree the kids all got to try out.

 It was an interesting visit.  Sarah and Noah were really nervous to visit and I couldn't understand why until they said they were afraid of ghosts.  As I was trying not to giggle I explained that a ghost town does not have ghosts it just means it has been abandoned and no one lives there anymore.  I am glad we went and that we can now say that we have visited a ghost town minus the ghosts--haha!

That evening we took the kids swimming at the condo pool which really wore them out.  We had not problems getting everyone to bed that night!

VACATION DAY #3:  Zion National Park

The next morning we got up really early to head over to Zion National Park.  Although we got there early we were shocked to see how many people were already there.  It was crazy!  After parking, packing up our backpacks, and having everyone go to the bathroom we headed over to get on the shuttles.  There was over a 45 minute wait just to even board the shuttle!  It was crazy!  Anyway, we made the best of our wait in line by taking crazy pictures while we waited:

 The first hike we decided to try was Angel's Landing.  Aaron and I did this hike two years ago, but didn't finish the last 1/2 mile since it looked crazy scary.  I always regretted that so I wanted to try it again only with Josh and Daniel this time.  Aaron wanted to take everyone else up to where the chains started so we all started up the trail together.  It is rated as a strenuous hike so we were just going to see how the other kids tolerated it.  It gains about 1500 feet in elevation over 2.5 miles which is steep.  Amazingly enough the kids all did great and didn't complain.  About the middle of the hike Josh, Daniel and I separated from Aaron, Matthew, Sarah and Noah as we hiked a bit faster.  Here are me, Josh and Daniel going up Walter's Wiggles which is a set of 21 steep switchbacks that is part of the trail.  Here are Josh and Daniel almost at the top:

Here is a stock photo of what Walter's Wiggles looks like so you can see how steep it is:

The last 1/2 mile of Angel's Landing is intimidating.  To make the last 1/2 mile you have to hold on to chains to get up the trail so you don't fall off the steep drop offs on both sides.  It doesn't help that there is a sign at the beginning of the chains to show that people really do fall and die on this trail:

 Josh, Daniel and I got started on the chains.  I was doing okay up until the last little bit of the hike when my fear really took hold and I couldn't go any further.  I am afraid of heights and it just got too much for me trying to clutch the chains, trying not to fall off the trail, trying to pass people going back down while trying not to fall off, etc.  Josh being Mr. No Fear he  told me he was going on and would meet back up with me on his way back down.  Daniel was really scared, but since Josh went on ahead with the trail he decided to get to the end as well.  Here's the point I got to before I just couldn't go any further.

Here's the views from where I was sitting:

 Yes there was a complete 1500 foot drop off less than two feet from me.  While I was waiting for Josh and Daniel to come back this squirrel kept me company whether I wanted him to or not.  He was not afraid of me and I could have picked him up if I had wanted to, but I really didn't want to get bitten or get rabies so I kept shooing him away only to have him come back a few minutes later.

 Here's the view of part of the scary trail from where I was sitting:

 Yes that is a complete drop off.  I was having cold sweats just thinking about going back down with the sheer drop offs and trying to pass people gripping on to the chain and trying not to fall off.  I had gripped the chain so tightly my knuckles were raw and bleeding by the time I got off the chain part of the trail.

Fortunately Josh and Daniel made it to the top.  Unfortunately, Josh's phone with the camera died right as he got it out to take a picture--doh!!  Just to show what it looked like at the top I did find a few stock pictures since Josh and Daniel weren't able to take any.

I was so nervous on the trail that I didn't take any pictures to show how crazy it was so I found some more stock pictures to show how steep, narrow and scary the actual trail was.  Yes that is a sheer 1400 foot drop off on both sides of the trail.  Trying to pass people was crazy scary!

 Another drop off next to the trail:

 More stock photos of how narrow and steep the trail is along the chain:

 I was so stressed out and scared that I refused to let go of the chain.  Unfortunately there are parts towards the end of the trail where there is no chain and you have to climb up the rocks and hope you don't trip because there is nothing to hold on to.  Gulp.  Yes I could have done this when I was younger, but as I get older I get more cautious and afraid so although I didn't make it this time ( I came super close--I really only had 50' more to go) I am at peace that I didn't make it and will have no regrets this time.  I was so nervous about Josh and Daniel, but they did great.  Daniel was really scared, but he kept going.  Wahoo Daniel.  This hike didn't even phase Josh.  He really isn't afraid of anything....

It was nice to see Aaron, Sarah, Noah and Matthew waiting for us as we came off the chain part of the trail:

 They made their own fun while they waited for us.

 Sarah and Noah had Aaron take a picture of them to show they made it to where the chains began:

 While waiting Noah made sure he covered himself with as much red sand as he could.  The van and our house is full of red sand.  No matter how many times I clean it up I keep finding new piles of it falling out of Noah's shorts pockets or his shoes.  What a crazy kid!

 Here's the Angel's Landing Crew--I came close enough to count it--haha!

 Again Aaron and I were surprised about how well the kids did while hiking such a strenuous trail:

Here we are going back down Walter's Wiggles:

 I am glad I didn't fall off the trail so I could take a selfie with my hunna:

 Noah it seems has taken after Josh with having no fear.  We kept telling him not to run down the trail.  Luckily, after we passed by all the drop offs he started running then he tripped, fell and skidded to a halt.  He had some major road rash on his hands, wrists, and knees.  Luckily, there was a Good Samaritan that stopped by who happened to have a first aid kit along with him.  I left ours in the car--doh!!  Anyway he helped me clean up Noah's bleeding wounds, gave me some Neosporin to put on his cuts and some bandaids to help keep them clean.  I was so appreciative!!  I think Noah learned his lesson the hard way that you really shouldn't run on the trail like Mom and Dad told you to!!  Poor guy!

By the time we finished that trail it was time for lunch.  We got on the shuttle and headed back to the car to eat our picnic lunch.  Sarah promptly fell asleep in the shuttle and was truly out:

 After lunch we went on a few more hikes and then we decided to hike down part of the Narrows.  For that hike you go down a regular trail until you hit the Virgin River.  Then you walk up the Virgin River through the slot canyons.  It was really fun.  Josh took a picture by a waterfall down the rock side:

 The river varied in depth between ankle deep up to my mid thigh.  It was so much fun.  I was a bit nervous since there were big rocks on the bottom of the river you couldn't see which meant you got tripped a few times.  That wouldn't have been bad except I had my cell phone and my electronic key FOB that would have gotten ruined had I fallen all the way in the water.  Thankfully that didn't happen.  Here I am walking with Sarah and Noah down the river:

 The kids LOVED walking and playing in the river.  Here's Josh, Matthew and Noah playing:

Here's Aaron and Sarah walking down the river:

 It was really pretty to see the slot canyons:

Daniel loved playing in the mud.  He even learned how to make a mud ball and skip it across the top of the river:

Noah had no fear and we had to keep calling him back because he kept getting too far ahead since splashing/wading through the river didn't scare him despite it getting up to his mid chest.  What a crazy kid!

 Here's Sarah:

 Here's the boys:

 Sarah even found an alcove she climbed up in along the trail:

 The sides were steep, but it was really pretty!

 Here's a selfie that got photobombed by a cute boy:

 Luckily this was the last hike of the day since we were all sopping wet by the end of it.  We went about a mile down the Narrows before we turned around and came back.  It helped cool us off since it was near 100 degrees.

 On the way back to the shuttle stop Matthew was holding Noah's hand and Noah was waxing philosophical again.  Good thing Matthew doesn't talk much while hiking--haha!

 On the way back we walked by a mom and her fawn.  We were able to get pretty close, too, which was surprising:

Back in the shuttle:

When we got back to the parking lot there was another deer that was not afraid of us as we walked by it to get to our car:

 This day really wore everyone out.  We went on quite a few steep hikes which by the end of the day my Fitbit showed I had hiked over 251 floors.  Let me tell you my legs were so soar the next day, too!

VACATION DAY #4: Fiiz, Snow Canyon, St. George Temple, Swimming

The next day we rewarded the kids with a Fiiz drink since they had been such troopers through all the hikes.  They didn't mind--haha!  We took up almost all their available bar stools:

 After stopping by Fiiz we headed over to Snow Canyon State Park to check out what was there.  It was cool to see another slot canyon:

 Daniel and the kids loved climbing into the holes they found along the way.  Here's Daniel:

 Here's Josh, Sarah and Daniel in another hole:

On the way out a Roadrunner ran across the trail by us.  I kept expecting it to say, "Beep Beep!', but it didn't.  I still kept my eyes peeled for a coyote, too, but didn't see one either--haha!

 We hiked up an extinct volcano.  We were pretty slow because this hike was really steep.  Josh wasn't very patient and left us in the dust.  By the time we reached the top, he had hiked clear down to the bottom of the extinct volcano.  He is in the center of the volcano cone.

 I zoomed in on the picture so you could actually see him with his dark blue shirt on with his hands outstretched.

He has done so much running lately he is in really good shape and ran circles around us on all the trails we went on.

When he saw us finally make it to the top of the volcano he ran back up the trail to get in the picture with everyone.

 On the way down the trail we saw a big rock with a crack down the middle so Sarah and Matthew got their picture with it as they tried to pry it open:

 After spending the morning and early afternoon hiking we went back to the condo and Aaron, I, Josh and Matthew got dressed to go to the St. George Temple to do some baptisms for the dead.

 It was an awesome experience.  That was the first time Aaron has gotten to baptize me which was cool.  Josh found some family names for us before we left on our trip so we were able to do family names which is pretty neat, too.

When we got done at the temple we took the kids swimming again at the condo pools.  By the end of the night everyone was exhausted.  Aaron had to take Noah to bed since he had passed out while sitting on the couch:

VACATION DAY #5: St. George Walking History Tour, Homeward Bound

On the last day of our trip we got up and packed up our condo.  Then we went on a walking history tour through down town St. George.  It was really neat to see the historical buildings and the history of the city.

 One of our favorite stops of the walking tour was the Daughter of the Utah Pioneers Museum.  They had all kinds of different old tools, clothing, pictures, etc. that were interesting to look at.  They didn't allow photos inside so you will just have to take my word for it.

 We stopped by the old jailhouse, too.  Too bad it was closed so we couldn't throw the kids in jail--haha!

 We stopped by Brigham Young's Winter home where we were able to take a tour led by a set of elderly LDS missionaries.  They let the kids try out the old telegraph machine which they thought was pretty cool:

 They even showed us some cotton plants in the garden with grape vines, too:

 At the end of the tour we stopped by the temple to visit the Visitor's Center.  That temple is really pretty.

We got home late last night and everyone crashed after unpacking.  It was a busy vacation, but lots of fun.

Matthew was super excited to pick up Sophie this morning from being kenneled at the vet.  He really missed her.  It was fun to pick her up because she was so excited to see us.  We felt guilty we had to drop her off in the first place, but what can you do?!  It is nice to have everyone back home and back into a routine again.  I did feel a bit guilty that Aaron had to go back to work this morning.  Good thing tomorrow is Saturday, right?!