We have internet!

Finally after 3 months we have internet!  I am excited to be able to blog again.  This is what we have been up too lately.  First I will start of with the medical issues, On December 10th, Tayton had his 8th surgery.  This time it was at the burn center and we had three surgeons in the OR at one time.  The ENT, Dr. Smith came and did another airway dilation.  Taytons airway was smaller then it was in July at his last surgery, so basically the airway surgeries are not working, they just buy us time.  His airway is good for a while then it scars right back up.  So our options are to keep doing surgeries every couple of months for the next 5-10 until he grows, tracheotomy, or a huge surgery called a sleeve resection.  The problem with the sleeve resection is if he scars, (which I am pretty sure he will) there is nothing more they can do for him and he could end up on a tracheotomy the rest of his life.  I'm not all that excited to jump into that one.

If we do a tracheotomy right now it would be temporary maybe for 3-5  years until he grows and his airway gets a little bigger, but the problem with a trach is he can't talk and any sickness would go straight to his lungs.  And also it is a lot of surgeries to get the trach out.  I'm not feeling this one because his quality of life in between surgeries is amazing and he is doing great, so until it's not I feel like we should just keep doing what we are doing and just have surgery after surgery and hope that maybe one day he can outgrow his airway problem.  He will still have a lifetime of airway problems, but hopefully it won't effect him as much when he is full grown because his airway should grow too.  It is hard because I want it fixed right now, but I am trying to look at the big picture and what is best for him in the long run.

So after the airway part of the surgery, we had a plastic surgeon come and the burn doctor.  The did some laser treatments to Taytons scars on his arms and on his donor sights where the took the skin from.  They also injected the scar tissue with a steroid and hoped it would be less inflamed.  They told me to not get my hopes up too high that it might not work because his scarring is so severe.  Well it worked!!!!!!!!!!  For the first time in 7 surgeries we had a great outcome.  Before his surgery his skin was so tight that if you stretched it, it would break open and bleed like crazy.  Then the wound would never heal because the skin wasn't there to heal it.  So he has had open sores on his hands for five months now.  The sores have healed so great, still hard in a few spots but he is able to bend his hands and fingers now without tearing skin.  And after 14 months of physical therapy he has full range of motion now, something I thought we would never get too.  I seriously cried because I was so happy to see such a good outcome.  Here Tayton is crossing his fingers and praying that it worked.

He still has really bad scarring on his wrists, which he will need skin grafts done again, probably this summer, but at least it won't be as much skin grafts as before.  We are doing more surgeries with the laser and steroids.  One at the end of this month, one in March, and one in May.   Hopefully during the March or May one we can get the ENT to come and do another airway dilation.  Oh, the scariest part of this surgery was when he was recovering.  He had to be back on the ventilator because his airway was so swollen from the surgery.  His aiway is the size of Blakeli's, so they have to put an infants size ventilator tube it.  Well it was too short and he just slightly turned his head and the ventilator tube came out.  Luckily the doctor was right there, and one of my favorite nurses Erika caught it like that.  So Erika hit the code Blue button, which makes everyone come running and 20 people are in your room.  They were all working on Tayton, making sure he kept breathing.  The hurried and called anethesia and it took a while but they got the ventilator back in and he was ok.  Still one of the scariest moments to see that many people rushing to take care of your child.  Anyway, not to the best part about the surgery was his roomie from burn camp, Noah was there.





   Noah had to have another surgery too, but when you have a buddy in the hospital life is good.  Noah was anxiously waiting for Tayton to get off the ventilator so they could play.  So once Tayton was off it was the cutest thing I ever saw.  First I tried the game Guess Who, not a hit.  It was almost Noah's birthday so we brought him some Lego's and Tayton got some new Lego's.  So they built Lego's together and then it was Wii time.  They played Lego Batman and just talked about the game and normal 8 year old kid stuff.  It totally took his mind away from the iv's, surgeries, hospitals, it was the sweetest thing.  They talked about burns and their scars.  Then they watched some cartoons and just had a ball.  That is all you need in life is a good friend who knows what you are going though.  Noah gave him this box head and Tayton wore it why we were walking out of the hospital.  It was so funny and we got some good laughs.  Who said hospitals can't be fun?

Then the other person who makes him smile is this little girl!  You could tell they missed each other.  I love the burn unit because Blakeli can come in.  She can't go in the PICU at Primary Childrens.  So it was nice to be able to be with both of them.  Plus you all know how much I love the staff at the burn unit.  It was so nice to see my "burn family" again.

 Blakeli is growing up way too fast.  She is 9 months old.   She is into everything, she army crawls all over the place.  She knows how to crawl but she isn't as fast and sometimes she falls, so she prefers the army crawl.  She stands up on things and now needs toys to keep her entertained.  Her absolute favorite thing is the bathtub.  She doesn't like it with water though.  She will crawl over to the bathtub, pull herself up and babble until I go put her in.  Look at how happy she is when I give her what she wants.  Then she yells when I take her out.  It is so funny.  She gets terrified if it is filled with water.  She is such a funny girl.  Still the best baby ever.  Just what we needed.  She finally got her first tooth.  

Tanna has been so much fun.  She had her first dance recital last week.  She danced to Katy Perry's song Roar.  She looked so cute, and she loved being up on stage.

  At dress rehearsal she wanted to watch all the other girls dance.  Maybe the dance teacher in me is coming out and not the mom, but she has some work to do on her dancing.  I try to tell her to point her toes and things like that but she tells me I'm not her teacher and I don't know how to dance.  I think it is funny.  What is my little sassy tiger going to be like when she is a teenager.  But it was so fun watching her and she did great for her first time!

Last night we got to go to Hope Kids Super Hero Bash.  It was so much fun.  There were tons of super heroes and villains.  

 Hanging out with Darth Vader.

 Then we all danced with the Storm Trooper.  Who knew Storm Troopers had awesome dance moves?

 Taytons favorite was the Joker.  He was so fun, he gave Tayton a playing card and wrote on it that Tayton was his hero.

 Tayton was mustache man and his super power was strength.  Tanna did not want any pictures with the characters, but she went as flower girl, and her power was she could make flowers grow anywhere.  She had a really fun time.

In December Tayton and Tanna got to go shopping with the Jazz Bear for Christmas and they got to meet the real Power Rangers. This was right after Taytons surgery and he wasn't feeling the best so he looks pretty grumpy but I know he had a great time.

The Blue Power Ranger, it was so much fun and the kids got spoiled rotten.  We were able to do this because of Hope Kids.  I love that organization so much.  It has made such a huge difference in our lives and it is so nice to meet other families who have been through such hard trials as well.  It makes ours not seem so hard.  Sometimes I get a bit discouraged and get pretty angry after a surgery when they tell you, you have another 5-10 more years of this ahead of you.  But then I go to a Hope Kids event and meet amazing families and then my trial seems like nothing to what they are going through.  My child will recover, and some of their kids never will.  Last night I met a mom and her 8 year old son has MD.  (Muscular Dystrophy)  Eventually all his muscles will slow down and he will never recover from it.  The average life expectancy is in their 20's.  I asked her how she deals with it, and she says we live every day to it's fullest.  We are just grateful for the time we get with him.  I need to be more like that and realize that I should be grateful that my child can recover.  I bet most of those parents would give anything they could to have a chance that their child could recover.  So today I am feeling so thankful!