Calling all angels!

Calling all angels.........So I have been a little crazy lately and I want to do something about it. So whenever you are feeling discouraged I think service is the answer. So I am doing a project for the University of Utah Burn Center. These are some items that we would love to give them.... Legos,-small sets so the kids can take home, they can't re-use them. (We have 12 so far) Legos are so amazing for physical therapy and have really saved Tayton. Crafts for the kids, the days can be long and extremely painful and anything to take their mind off of that would be great. So far we bought scene stickers, bead crafts, and some other misc items from Oriental Trading. We still need more. I would also love to donate crayons and coloring books. If you can think of anything else kids would love in the hospital, please feel free to donate. Then also for the parents we are looking for hygiene kits. Toothbrushes, toothpaste, shampoo, conditioner, hair brushes, things like that. Some of these parents live states away and come with their loved one on life-flight and don't have anything and the last thing you want to do is leave your child to go to the store. Thank you and please contact me if you can help!!!!!!!!!!!!!!!!!!

Valentines Day!

Happy Valentines Day everyone!  We started Valentines Day a little early.  Wednesday night our ward had a party and it worked out nice because Levi had to work on Valentines night.   It was a fun night, here are a few photos.

Girls only picture.

 Blakeli had no desire to wear the hat.

Family photo

Boys only photo

So I had to take Tayton out of school because he kept getting sick and it made it really hard for him to breathe.  But Valentines Day is important when you are a kid and he really wanted his Valentines.  So thankfully Taytons teacher took his box to school for him and he was able to get his Valentines.  Here is his fun box.  Lego's all the way.  Tanna made her own bag at Kindergarten, I forgot to take a picture.

So our day started out going to Tanna's school and helping with her Valentine Party.  She loved it!  Here is the picture of her hair on Valentines Day, she loved it and kept posing.  She loves her hair done and it is just fun to watch her look in the mirror.

So then after the class party we headed down to Primary Childrens again.  We had all ready been there on Tuesday this week, but Taytons right wrist had a huge bump on it and I could tell it was infected.  I couldn't touch it or he would scream and he can't even move his wrist.  So first we went to the plastic surgeons office to see what she thought, then she sent us over to primarys to get an ultra sound done.

 Tayton was not happy.  He wanted nothing to do with it.  Here he is in the ultra sound room.  He just kept screaming and saying he wanted to go home.  Well, they did the ultra sound and found a bunch of fluid and infection underneath his right wrist.  So they had to get it out.  Tayton was crying and mad and was done.  He wouldn't let them touch him, but then I think we had an angel nurse come in.  She went and got her I-pad and asked Tayton is he wanted to play Minecraft.  That boys eyes lit up and from that moment on he was fine.

 So after the ultra sound they took us back to the "Jazz Room."  This is a room that I have never been to.  Sadly I know that hospital too well.  This room had all the jazz signatures on the ceiling, pictures all over, the cabinets were made to look like a locker room.  They had Jazz memorabilia everywhere.  Tayton thought it was pretty neat.  So they put some numbing cream on his wrist and then we talked about doing some sedation medication but because of his airway problems they wouldn't.  So poor kid just had some numbing cream put on his wrist and that was it.  Then they stuck this huge needle in his wrist and drained nasty infection out.  I felt so bad and I wish this could all be over for him.  It has just been a really hard week.  I am just mad.  I feel like this isn't fair.  How does one bad decision of watching older boys play with fire result in a life sentence of medical problems.  I don't get it.   He was seven, he didn't know it was wrong.  Why does he have to suffer the rest of his life because of one mistake at 7 years old.  I have been feeling so guilty.  If I would have been a better mother none of this would have happened.  If only I would have picked him up from school that day.  If only I would have taught him about fire and the dangers of it.  I know it's not my fault but it is really hard to watch your son suffer and knowing that it could have been prevented.

Anyway, so after 7 hours at the hospital it was time to go home.  I realized I hadn't done anything I wanted to get done that day, and I hadn't done anything for Levi.  So if any of you know me, you know I hate fish.  I hate it with a passion.  I hate the way it stinks up my house when it is cooked, I hate the look of it, and the taste of it.  Levi on the other hand loves fish.  So if you bought salmon at Harmons on Valentines Day, some of the proceeds would go to Burn Camp.  I thought it would be a win win situation.  I can show my husband how much I love him by cooking fish and supporting burn camp at the same time.  So here is my very first salmon dinner.  I hope Levi realized how much I love him.  I went way out of my comfort zone for him.  He had to work that night, but at least I got to see him on his dinner break.

So that was our Valentines Day.  I am grateful I got to spend it with the ones I love, even though it's not where I wanted to be.  I hope everyone had a Happy Valentines Day!

Surgery #9

Last Monday on February 3rd, Tayton had his 9th surgery.  This picture is before surgery and we weren't isolated in our corner room.  He loved playing the Wii.  This time it was another laser treatment and steroid injection on his arms, hands, and thighs.  They did the thighs because it is where they took the skin for his skin grafts and it scarred pretty bad.  I was a bit nervous because his airway doctor wasn't going to be there for surgery and I wanted his airway to stay safe.  Every other time he has had a surgery he has always been on a ventilator after.  I was nervous that if he was under anesthesia he wouldn't breathe very well and the plastic surgeon wouldn't know what to do for his airway.   I always plan on the worst happening because of his history and it is easier to deal with emotionally when you plan on the worst happening.  But no problems at all.  The surgeon came back and said it was a really boring procedure and everything went as planned.  Not one complication.  I seriously couldn't believe it.  Not one complication for my sweet boy.  That hasn't happened in 15 months.  I was so happy and I think everyone in the recovery room thought I was a little nutty because I was so happy after a surgery.   Seriously how could you not be happy to see him like this after surgery, instead of on a ventilator.

So we went home in a few hours.  And I couldn't believe that on surgery day we went home.  It was pretty nice.  His next surgery is March 17th, (St. Patrick's Day) apparently we are making it an annual thing to have surgery that day.  It will be another laser surgery on his arms and hands.  They are just trying to break down some of the crazy scars so they won't have to skin graft as much this summer.

The only problem with  this surgery was he seemed to be really tight after and now he can't bend his hands that great, so back to weekly physical therapy up in Logan, and twice daily with mom.

Sooooooo now to the fun part.  We went to the only other airway doctor at Primary Childrens that we haven't seen today.  I wanted a second opinion on what to do for his airway.  This doctor was nice and professional, but it wasn't the news I wanted to hear.  Basically summed up in a nut-shell, Tayton will never fully recover from this, ever.  It is because the scarring is right on his vocal chords.  If it were below, they could do other surgeries that would fix it, but Taytons not even a candidate because the damage is too high in his airway.     He said Tayton will need to have a posterior cricoid graft surgery eventually because you can't go in every 3 - 5 months the rest of your life for surgery and the airway dilation's should have worked by now.  The posterior cricoid graft surgery, they laser off portions of your trachea and replace it with rib cartilage.  It is a very extensive surgery and you are in the hospital for quite a while.  He said he would have done exactly what our other doctor has done.  He said he felt comfortable doing the surgery but Dr. Smith has more experience.  I asked how many kids there are at Primary Childrens with this problem.  He said about 7 - 8 kids come in with subglottic stenosis, but Tayton is the only one with the vocal chord problem.  So they don't deal with it all the often.

It just seems like there are these small surgeries we are doing, or a major crazy surgery.  I feel like there should be something in-between.  He did say that Cincinnati Childrens Hospital is the top hospital for reconstructive airway surgeries in the world.   He thought it might be worth a try to consult with them because if there is a new procedure coming out, they would know about it.  I all ready checked with my insurance and they wouldn't cover any of it to go out there. I am going to try a lot over the phone and talk to them and see if it's worth looking into.  I am praying they give me some other options.  But one thing I know for sure is that I am doing my very best to help Tayton recover and I want to know all the options before we make any major decisions.  I just wish there was such a clear choice.

But everything else is going great.  I'm sorry all I post about is Tayton and his surgeries, but it pretty much consumes our world.  We just love our little boy so much.  I love my sweet girls too, I'll be sure to post about them next time.