One Year!

 

 

So today marks the one year anniversary of Tayton's accident.  I am really nervous today and almost didn't let Tayton go to school today or all week.  But I have now decided that I am going to let this go and start enjoying life again and keep moving forward.  Looking thorough all these pictures brings back so many emotions for me. 

 I can't believe this is what our lives were a year ago.  Getting him on the air-med helicopter.  I still can't believe I honestly thought I would just take him to the Brigham hospital and they would put some burn cream on him and we would go home. 

 When we finally arrived at the burn unit and got to see Tayton that night this is how he looked.  The swelling began.  I thought they had the wrong kid because it didn't look anything like him.

 His poor arms.  So much dead tissue.

 Other arm.

 So many medications just to keep him alive and this was only about half of them.

 I think at this point the reality was setting in that it was serious and he wasn't going to recover quickly.  The hardest part for me was trying to picture my life without him in it.  I couldn't have handled that.  I need my son.  So glad it wasn't worse. 

 I look back at these pictures and wonder how in the hell did we ever go through this.  My mind sometimes numbs it out because it really was the hardest thing I have ever seen to watch my son suffer and almost die.  I still try to process everything but it is too overwhelming and I will never understand "why" but now I am starting to see some amazing things that have come from it.
This was one of the worst days.  Look at how much fluid he had.  This was when the doctor was telling me his heart was having problems, his liver and his kidneys were shutting down, I was a wreck.  I'm not sharing these pictures because I want you to feel bad for us, or anything like that.  I am sharing these pictures because it shows how many miracles we have had this past year.  It shows how far this little boy has come from what he has gone through.  It is amazing that a year ago today he was like that and today he is so happy and full of life.  Here are some of my favorite things about the past year.

This is when we hiked up to waterfall canyon this spring.  It was in spring and it was so amazing to me to see him hike.  When we first brought him home from the hospital he couldn't even walk up the stairs without stopping because he couldn't breathe, and then a few months later to be able to go on a hike was a huge miracle.

The first couple of months when we came home Tayton was having a hard time emotionally.  This boy loves to draw and be creative and that entire side of him was gone.  He wouldn't laugh, he didn't smile, he wouldn't talk about anything from the accident.  Every night before bed I make the kids tell me three things, they say I'm special, I'm important, and my family loves me this much and I tickle them.  He would not say that for about three months.  I remember it all started to change during the Biggest Aggie fan competition.  I know it sounds silly that a little photo contest could help but something about that just made that boy smile.  He started drawing pictures again, he was dancing every time he got more votes.  The laughter and smiles came back, and I will never forget that first time when he said I'm special, I'm important, and my family loves me this much.  I cried my eyes out because I was so happy.  That photo contest was a huge miracle to me because it brought him emotionally back to life.  It didn't matter that we won anything (even though the football games are so much fun) what mattered to me is that my son healing from such a traumatic accident.

In fall he started flag football.  This is his favorite sport.  He was lucky to get the same coach again and he knew everything that was going on.  Tayton just felt like a kid again being able to play.  He mostly did a lot of blocking because he can't really run but he was beyond thrilled to be able to play.  Huge miracle for me to watch him play because I didn't know that sports would ever be an option again.

Same thing with wrestling.  Last year he was an amazing wrestler.  This year I knew he wasn't going to be anywhere like where he was last year.  It was hard to go to his first wrestling tournament.  He was so frustrated because his weak body couldn't do what he wanted it to do.  There were a lot of tears and he came in dead last, but just the fact that he is out on the mat was a huge miracle.  He did so much better at his second tournament.  Still weak it the body but he has the strongest heart.  He was more aggressive and I think he worked so much harder because that strong spirit in him wants to get back.  I don't know what the future holds, I don't know how his airway will be in a few years, I don't know if he will ever be a champion wrestler or an amazing football player, but that doesn't even matter.  He is so amazing and he is a champion!

All of this progress did not come without a lot of hard work.  So if there are 365 days in a year, that means I have done at least 361 wound cares, (he went to burn camp for four days and they did it there) which is treating all of his open sores on his arms, putting on lotion, burn gloves, and other medications on his arms.  He has done over 1000 physical therapy sessions.  They are easier now, but at the beginning it was so painful for him.  7 surgeries with another one coming December 10th, and I am just guessing but I think over 50 doctor appointments.  He has had over a million dollars in medical bills.  Now I can actually say my kid is worth a million bucks. My son is amazing and I am so proud of how far he has come this past year.

I will never say I was grateful he got burned.  I would never wish it upon my worst enemy to go through something like that.  But what I am grateful for is the blessing we have received from going through this.  I have met so many amazing people that I wouldn't have been able to meet.  I have grown so much, I would have never been able to look at things like I do now without going through that.  I feel like I am more sympathetic then I was before, every sad story that comes on the news just breaks my heart.  I want to help them, I feel so awful for them and what they have to go through.  Before I would just think, oh that's sad and move on with my day.  I am a better mom, I cherish my children.  I don't sweat the small stuff, if my house doesn't get cleaned because I wanted to hug and kiss my baby a little bit longer it is ok.

Last year in the hospital I was so mad at myself.  I kept saying, I wish I would have spent more time with him, I wish I would have played more games with him, read him more stories, taken him to the park more.  Nothing else in the world mattered.  I would have given all of my possessions, everything I had if it meant keeping him here.  I am grateful I get a second chance with him and I want to be better.  I want to spend more quality time with my children.  I still have a long way to go but I feel like I am improving and I want to be a little better every day.   

So today, instead of crying and being depressed, we are choosing to celebrate.  I still have my son and my daughters and a wonderful husband.  What else in life matters?  They are my miracles.  I asked Tayton what he wanted to do and he said have a family game night with a pizza party.  I couldn't have picked anything better to do.  So every year on the 15th of November (and hopefully more days then just that)  I am going to remember the important things of life and try to not get stressed over small things that don't matter.  All that matters is being together and enjoying life.  Can't imagine what my life would be like without these little miracles, I love them so much.  Thanks to everyone for all the support you have given to me and my sweet family.  I know I wouldn't have been able to make it through all this without your help.  Thanks again.

Some days are harder then others

So yesterday was a lot of doctor appointments and I'm not going to lie, it was rough.  We first started with physical therapy at the burn center.  They were pretty busy just making Tayton new splints to sleep in at night because he destroyed all of his other ones.  The thumbs were falling off, they were cracked everywhere.  It was time for some new ones.  He can bend his fingers and wrists better now then he ever has been able to since his accident, but he still has a hard time doing some simple things such as, opening a door, buttoning up his pants and things like that.  He has absolutely no grip strength but hopefully over time he can get some of that back.

So after two hours at physical therapy, it was time to see the burn doctor for his clinic appointment.  She told me that Tayton needs another surgery which we all ready talked about, but this time she explained exactly what would happen.  First they cut off his scar tissue, then they put "integra" a plastic like substance to help with scars.  Then they have to let that heal for 10 days then they will do another surgery and have to do skin grafts over the integra.  I'm not going to lie, I cried a lot.  I am still crying.  I feel like we have come so far in a year, but now we are going back to do more skin grafts and it is like starting this entire process over again.  His first skin graft surgery I didn't know what to expect, but now I know and I don't know how to get through this.

How do I explain to Tayton we have to start over again?  How do I tell him he will need two more surgeries when he has all ready had 7 in a year.  This is heartbreaking to me.  I can't do the painful physical therapy all over again, I can't see him cry like that any more.  It's just too overwhelming to think about and it will take me a while to process everything.  But really the only choice I have is to do it.  I have to be strong for Tayton.  There is no other option.  Somehow I just need to find that extra strength because I have to be strong for him.  I just don't know where that is going to come from.  This has been the hardest year of my life and it is never ending.  How much can one little boy take?

Then after that fun visit we headed to his ENT.  His doctor said he needs to be there for the surgeries to protect his airway so we are trying to see if they will do another airway surgery at the same time.  The problem is at the U of U they don't have child sizes for Tayton so we are going to see if the burn doctors will  operate at Primary Childrens.  It is a long shot but if that means one less surgery for Tayton, I am all for it.
Dr. Smith does think his airway has improved so much so at least we had some much needed positive news.  He still has a long way to go before his airway is stable but he is improving.

So that was our fun day yesterday.  Like I said earlier, just give me a few days to process all of this, and then I should be better.  Just avoid me for a few days because I am pretty down right now.  But we did have the best vacation ever so I will post about that when I can find a minute.  It was so much fun and I need to keep looking at the positive.  Also our house is coming along, I didn't realize how much work it was going to be.  My parents have helped a ton and my in-laws have been a huge help with watching my  kids.  I couldn't do this without them.  We still have to tile and carpet then we can move in.  It will be nice to be in our own place again and I am getting so excited to have a place that it ours!

First day of school!

I know I am a little late posting these pictures, but better late then never!  The kids love being back in school.  On the first day back, Tayton said he didn't want to leave.  He loves school and it was such a blessing that he is healthy enough to go back to school.  I am planning on taking him out of school during the horrible winter months, but if his airway is stable I will try my best to keep him in.  We will just have to wait and see how he does.  So far he is doing great!

 So exciting.

 Ready with his Indiana Jones hat.  Can't get sunburned during recess.

 Waiting for the bus.

 Talking with some friends that he missed.

 It's finally here!  Didn't even turn around to wave goodbye.  He was to embarrassed and wouldn't even kiss his mom goodbye.

 Once Tayton was off to school it was time to get Tanna ready.

 She wasn't scared at all and couldn't wait to ride the bus to school.

 I love her pose.

 Had to show off her backpack.

 Her favorite thing about the first day of school was riding the bus and running the gold medal mile.

 This is the only pictures we got at the bus stop.  It started raining when the bus came, so we didn't get any pictures.  It was so cute, she just hopped on and waved goodbye.

So with two kids away at school I thought I would get a bit of a break.  The first day of school I ended up going to see a Orthopedic doctor and spent the entire time why Tanna was gone waiting in the office.  The 2nd day of school I had to meet with the nurse and principal to discuss all of Taytons medical issues.  The 3rd day of school I got to go get an MRI at the Brigham Hospital for my knee and guess what, I get to have surgery.  I tore my meniscus why I was running with my husband.  Apparently I tore it really bad, and if I don't fix it, it will only get worse and it will eventually just break and it would be a lot worse surgery.  So that will be October 7th, fun I know.  Sometimes I wonder if it will ever end, but I guess I just have to count my blessings that it is me and not my kids.  I would do a million surgeries if it meant Tayton didn't have to go through any more.

Also if I don't post on the blog a ton it is because we are in the process of moving.  Now I know what a lot of you are saying, why in the world would they move again?  Well, we BOUGHT A HOME!!!!!!!  Finally, we found a house in Perry that was in our budget.  We have been deciding what we were going to do, and we even talked about moving to Tremonton or out further north in Box Elder County, but we were hoping something in Perry would come up in our price range so we could keep Tayton in the same school.  We are so blessed that we found a beautiful home that hopefully we can spend the next 50 years in.  We are starting lots of projects and I will post some before and after photos.  I really feel it was such a huge blessing to be able to get this home.  I am so excited!

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!!!!!!!!!