Burn Camp!

“You're teaching someone to believe in the confidence that you're beautiful no matter what your scars look like.”

We dropped Tayton off of Friday, August 9th at Camp Nah Nah Mah,  aka Burn Camp.  I don't know where to even begin to start about how amazing this really was for him.  I guess I will try to explain my best what every picture is about.

  So above is Dan (the fireman) who was Taytons counselor and John another counselor that Tayton just loved.  These men are all volunteers who come up for 5 days.  Tayton just loved everything about Dan, he kept saying all the fun things they did together like play soccer, make a boon-doggle (no idea how to spell that) key chain and then pretend it was a spider and scare all the girls, play games, and so much other fun things.  Dan helped Tayton with his wound care, physical therapy, taking his medications, and that all of Taytons medical and emotional issues were taken care of why he was at camp.  Thank you so much Dan!  I could tell Dan sincerely cared about Tayton and that they had such a neat relationship when I picked him up.

This was Taytons roommate Noah.  I don't know too much about his story, but Tayton had such a fun time with him.  There were 4 adults and 8 kids to every cabin.

This was Taytons favorite buddy at burn camp, his name is Nakota.  We got his parents info so hopefully we can see him more often then every summer.  He was in Tayton's cabin and they had so much fun together.

Just some more picture of Tayton and his buddies.

This is a fun fire-hydrant that all the kids at burn camp put there hand prints on.  I guess they auction this off at the burn camp fundraiser dinner in April.  This camp is completely free to the children who were burned and I am so grateful.  There just isn't a lot of extra $$ when we have such huge medical bills. With trials come blessings, and I know this camp is truly a blessing.

They played a lot of games, this was one of Taytons favorite Angry Birds. 

They did Yoga every morning.  I stole this picture off the University of Utah Burn Center facebook page.  I loved it.  We met the man in the photo who had some of his fingers taken off in an explosion why he was serving our country.  It was such an honor to meet him.  Tayton said he liked Yoga but it hurt to stretch his skin.  I think it is good emotional and physical therapy to do Yoga, so we will keep it up.

I asked Tayton what his favorite thing about camp was, and he said everything!  I then asked if you had to just pick one thing, what would it be.  He said "Besides everything, it would have to be archery."  I didn't get any photos of him doing archery but I stole these from an article in the Desert News of his buddies at camp.

Tayton took a few pictures at camp with a disposable camera, I will post some of those when we get them back.

At the beginning of camp they wanted to welcome everyone in.  Just like they do at the Festival of Colors to welcome Spring in.  Here is then entire group before the colors.

Doesn't that look like so much fun!  They were concerned for Tayton and his airway, so they didn't want him in the middle of it. If you look on the side of the mountain, his counselor Dan is filming it, and you can see a tiny speck of white in the trees, that is Tayton.

This is the entire group after, Tayton is the white one in the front row.

He said someone hugged him after and that is how his shirty got all dirty, but he said it was such a fun time.

They did a lot of group therapy sessions, and taught them things to say if kids start making fun of their scars, gloves, or anything else.  They taught them a lot about self confidence.  It is so wonderful to have other people help reassure that his scars are amazing.  I think it is huge when it comes from another burn survivor!

They had a magic show one night and Tayton got to be the magicians helper.

I love the look on his face in both of these pictures.  You can tell he is having the time of his life.

On Tuesday, it was family day.  We got to come up around 4:00.  The kids all got to go to a carnival why the parents went to a parent support meeting.  It was nice to talk to other parents and get some great ideas on things I can do to help Tayton and the rest of my precious family.

At the carnival there was bounce houses, cotton candy, fire truck rides, pop corn, a photo booth, a huge firetruck where they could climb the ladder.  I know the kids had such a fun time.

Tayton was so excited to see Blakeli.  He just wanted to hold her.  Dan (the fireman) said Tayton kept talking about his sisters the entire time.  At dinner there would be bags of chips and Tayton would sneak a pack of Doritos because he wanted Tanna to have one because he knew she liked them.  They also got to earn "Burn Bucks" at camp for doing good deeds, and Tayton spent a lot of his burn bucks on prizes for Tanna.  I thought it was so sweet!

Right after the carnival Tayton was saying he was tired.  I told him he could sit in Blakeli's stroller.  Within two minutes he was asleep.  He has been so tired.  He did come back from camp with a minor cough that has really been hard on him.  He is struggling to breathe at night and just exhausted.  It was so worth it though!  Thanks to everyone who helped at burn camp, I know it was so amazing for him.  I can't wait to hear more stories when he wakes up!

11 years!

Can you believe this was us 11 years ago!  On August 9th, it was our 11 year anniversary!  We took Tayton up to burn camp on Friday, then we headed up to Park City for a much needed getaway.  My parents watched the girls for us (thanks mom and dad).  We had such a fun time and basically just relaxed and enjoyed spending time together.  I am sad to admit that we haven't been on a real date since Taytons accident.  I have a little PTSD going on and I had a hard time leaving my kids.  I thought this would be a perfect opportunity why Tayton was at burn camp and I am so happy we got to go.  It was hard leaving my kids, but when I went to pick the girls up on Saturday night, Tanna did not even miss me a bit and I realized my kids are in wonderful care and probably had a funner time with my parents then they would have had with me.

The past 9 months have been the hardest 9 months of my life.  I am not going to lie, it has been a struggle with me and Levi at times.  We have been so stressed and at times I really felt like giving up.  We handle stress a lot different, I tend to cry and go absolutely crazy at times.  My stress relief when Tayton was at the hospital was to be there 100% of the time and know everything that was going on.  Levi's stress was to leave and go for a run, take Tanna out, or get away from the situation.  It was hard for me that Levi didn't handle stress the same way I did. What is there a perfect way to handle stress?

Even though we have had our differences, this has brought us together more than I ever imagined.  Levi has been by my side the entire time.  He was there every day in the hospital.  He was there to wipe many many tears away.  He would hold me so close all those nights that I cried myself to sleep.  He would make sure I would eat and help take care of me when I was to weak to even take care of myself.  He is such a great husband and father and I am so proud to call him mine.  There is absolutely no way I would have made it through without him.  He knew right from the moment he gave Tayton a priesthood blessing, that Tayton was going to be fine and he never doubted from that moment on.  I wish I had faith like that.  Levi stayed strong the entire time and I am so grateful for that.  

Who knows what the next 50 years have in store for us, but as long as I have him by my side I know we can do it.  I know we will still have more trials ahead but I pray nothing like this last one.  Even thought trials are hard, the blessings that come from them are amazing.  Happy 11 years Levi, I hope we have many many more.

The Royal Ball

Last night Hope Kids held a Royal Ball in Layton at the Castle.  It was so much fun and Tanna had the time of her life!

 Waiting to go to the Royal Ball!

 We met Sleeping Beauty...

 Snow White....

 Belle....

 Cinderella....

Merida...

Cinderella's wicked step-sisters, who were actually very fun...

And out favorite Rapunzel!!!!!!!!!!!!!

We had so much fun dancing the night away with all the princesses.  It was so sweet and just a really fun night.

Tayton on the other hand did not enjoy the Royal Ball.  He pouted pretty much the entire night.  He did enjoy taking all the pictures with my phone.  He loves taking pictures of Blakeli and I find pictures and videos on my phone all the time.  It is pretty cute.

He did go into the Fairy Godmother Salon to go get his face painted.  He was pretty happy about having a sword.  Something tough, not sissy princess stuff.

Tanna got a flower princess crown.  Seriously, could life not be any better when you are 5!  She kept talking about it all night long and wanted to sleep in her dress.  She kept posing and curtsying, all night long.  It was so cute and so much fun.  When I first found out I was having a little girl I was so excited because I could take her to do all sorts of fun girly princess things.  Pretty soon she will be out of the Princess stage and just wanting to be with friends, talking on the phone, and into boys.  I am not looking forward to that at all, so  I am enjoying this stage why it lasts!!!!!!!!!

Running for Hope

We joined a group called Hope Kids and it has truly been such a blessing in our lives.  We first heard about it from one of our nurses at Primary Children's.  It is a big organization that helps children and families who have had life-threatening illnesses or accidents.  A lot of the children have cancer, and other really tough things going on.  It really puts things into perspective for me.  Tayton is the only child in the organization who has been burned.  Sometimes I get really discouraged with his airway situation and I get a little depressed at times and just keep wondering why me, why us.  But then we go to these Hope Kid events and I feel so blessed.  I look at other peoples trials with there children and it makes me realize ours isn't so bad.  We still have a long way to go to recover from his burns, especially his airway, but at least he is recovering.  A lot of those children we see don't ever recover and that breaks my heart.

On Saturday we did a 5k for Hope Kids and it was called Running for Hope!  It was such a neat experience, I didn't take too many pictures but we had such a great time.  My mom, dad, my sister-in-law Sara, Tayton, and myself were all on "Team Tayton."  My mom and dad pushed Blakeli and Tanna in the stroller.  The best part is Tayton rode his scooter the entire 5k!!!!!!!!!!!!!!!!  It is crazy to me that 8 months ago he couldn't even walk up the stairs without stopping to catch his breath.  Sometimes at night I go for a run and Tayton will come with me on his scooter, but he always gets so exhausted and has to come back home.  He was just cruzin on his little scooter and was waiting for us most of the time.  I think this little 5k was just what he needed.  He has always been so competitive and it was fun to see that side come back.

This was Tayton after the race enjoying some popcorn.  They also had bouncy houses, face painting, snow cones, cotton candy, fruit for the healthy people, crispy cream donuts, and just a lot of really fun things going on besides the 5k.  Oh, they also had a 10k, 5k walk, and the mile adventure walk so if you want to join us next year!  We are for sure going to make this an annual event.  Hope Kids raised over $31,000 at this event.  All the money goes directly back to this amazing program.

 Some other exciting news, look who was there at the race!  Tanna was thrilled and loved seeing all the princesses.  They had a raffle at the end of the race and one prize was a one hour Princess Party with Cinderella as the host.  We decided to put some raffle tickets in and guess what, Tanna won!!!!!!!!!!  She is so excited.  I feel like Tayton gets a lot of our time and same with our new baby, and Tanna doesn't get as much time as she deserves.  So I am so happy we can have a day that is going to be all about Tanna and making her feel special because this has been really hard on her.  She had a hard time watching her brother and best friend go through that and lets face it during the first couple of months after the accident, I was not fun to be around.  Tanna has been such a great help to me and is always helping her little sister.  She is such a sweet little girl and I am so excited to have a Princess Party for her.  We can't decide when we are going to have it, but hopefully soon.

We had such a fun time and it was so nice being able to give back to an organization that has given so much to us.  Hope Kids puts on lots of fun activities (that are free of cost to the families,) and believe me with all the medical bills going on, there isn't a lot of extra money for fun activities.  It is so nice though to go to these activities and just relax and enjoy time together as a family.  We are so blessed to have each other and also so blessed to have such an amazing family and support system.  Thank you to all who supported "Team Tayton" and hopefully next year we can get more people to come out to this amazing event!

Surgery #7

On July 12th Tayton had his 7th surgery in 8 months.  He has been through so much but he is really happy through all this.  If you have noticed, every night before a surgery we have some sort of party.  We decided to get a hotel in Park City and take the kids of the Alpine Slide.  It was so much fun and the kids loved it.

 First Levi took Tayton down and I stayed with Tanna and Blakeli.

 Look at that face, he loved it and said "That was awesome."

 Then it was my turn to take Tanna down.  We got on the lift and it started to rain.  So we ended up waiting at the top for an hour before they let us go down.  Right when we got down and it started raining again so they closed the slide.  We still had more passes but we decided we will go in the morning before surgery.

 We woke up the day of the surgery and it was pouring so no Alpine Slide.  We need to get up there again before it closes for the season.

 Tayton's surgery was scheduled around 12:30 in the afternoon.  So he had some water and sprite in the morning then he couldn't eat anything the rest of the day.  We decided to go shopping at the outlets  to pass the time and the kids got new shoes, and Tayton got a rain jacket for Burn Camp!

Then the hospital called and said they were behind in surgery and not to come until 3:00.  We had fun and just played in Park City, then we went and checked in to the Ronald McDonald house.  We got to Primary Childrens at 3:00 and they finally got him in surgery at 7:00 p.m.  The poor kid was so hungry but he did so good.

 Luckily they had Lego Indiana Jones to keep his mind off of food.  Then they took him back into surgery and surprise, he was swelling really bad and ended up in the PICU back on a ventilator.  (They always tell me they don't think that will happen but I know my boy and sadly we are used to it.)

 Surgery went pretty good but he hadn't really improved as much as the doctor would have liked.  Guess that means more surgeries in the future.  Levi stayed the night with him in the PICU and I headed back to the Ronald McDonald house with the girls.  Tayton spent all night sedated and then about 10:00 a.m. they took him off the ventilator and it was time for his favorite thing about Primary Childrens...

Root Beer Slushies and Tacos!!!

The nurses thought it was so funny he wanted those, they told him to start with something easy to swallow like applesauce of chicken broth.  This kid knows what he wants and after not eating for a full day he wanted his tacos.  Pretty soon we got to leave the PICU and head on up to the third floor the Childrens Surgical Unit.  He spent most of Saturday playing video games, eating tacos and slushies, and hanging out.  

What I love about the 3rd floor is the girls can go into the room.  They don't let small children in the PICU, so it was nice to be all together and Tayton loved seeing his sisters.

 Tanna had fun pushing Blakeli all over the hospital.  The girls didn't stay to long because they were bored and I didn't want Blakeli around all the germs in a hospital, so Levi took them on a walk and both of them fell asleep.  I thought this picture was pretty cute.

Then on Sunday afternoon it was time for my super-hero boy to leave the hospital and head home!

He had to be on steroids for 15 days after surgery to help the swelling in his airway go down.  He always gets so angry and mad on steroids, his cheeks puff up like crazy, and he is so hungry he can eat the entire house.  He gained 4 lbs over the 15 days.  They keep his airway safe so I guess we will deal with all the other issues that come along with it.  We went back to his doctor for his post opp check-up and he said his airway looks so much better and he has improved a lot!!!!!!  Tayton even rode his scooter in a 5k race but I will post more about that another day.

His next surgery is going to be at the burn unit sometime in November for some skin releases on his hands and arms.   His arms, hands, and thighs from where they took the skin from have scarred really really bad, and it is hard to even find skin because there is so much scar tissue.  The burn unit said his scars are about as bad as they get.  He is very self-conscience about his scars and he would only let me take a picture of his good hand.  This is what his face should look like, but he doesn't have one scar on his face.  We are so blessed.

  His ENT said he wanted to be at the surgery at the burn unit to protect his airway so I am hoping we can just have him do another surgery why he is there and just get 2 surgeries done at once.  It would be nice, we will see.

Tayton doesn't seemed to be bothered by having more surgeries.  I just think we need to make sure the burn unit has tacos and root beer slushies ready for him.  Each surgery does seem to get a little easier.  It is still hard to see your child on a ventilator, that doesn't really ever change, but it is so nice that he doesn't get scared and we can make some fun memories together, even if it is in the hospital.  I am so proud of my little guy and everything he has been through.  I don't think I could do it.  He amazes me every day.