Tuesday, November 4, 2014

We have come so far!

I was just looking back at some old videos of Tayton where he was breathing horrible and he could barely put together the big Duplo legos.  
I am just so amazed to see how far he has come.  This boy is amazing!  I am one proud mom.

So here is what we have been up to the past couple of months.  Tayton had his final skin graft surgery on May 5th and it was hard.  The donor sights were the most painful part for him.  There was a time there where his skin was black and it looked like the skin grafts failed and we would have to do it again.  I was heartbroken because I didn't want him to have to go through another surgery.  But after three months it finally took and he has been doing so much better then I ever expected.  Getting new skin on has helped him so much.  He is getting his grip strength back where before he didn't have any.  He can bend them so much better.  He is happier which makes me happy.  For the first time in two years we don't have a surgery scheduled!!!  Life is going good right now.

The end of October I got to take Tatyon to World Burn Conference in Anaheim, CA.  It was so much fun and we met so many amazing people.
 We had some extra time before the conference started so we went to the Lego store!
 Tried on some fun Darth Vader Mickey hat.
 Then it was time for the conference, first they had a walk of remembrance for those who did not survive.  It was pretty touching.
 It was neat to see all the firefighters, they had the bagpipes and it was a very touching ceremony.

 Tayton went to a program called U Belong and he loved every minute of it.  His favorite activity was making a Lego movie.  His was called "Evil, Flying, Alien Crocodiles."  Sounds awesome I can't wait to see it.  He made so many new friends, none live close but we got some contact info for a few and I know we will keep in touch.  I went to some really good classes that gave me some amazing advice on what I can do to help him through this and take care of all the other needs of my family.  I as so thankful we got to go to this conference.

We did get a trip to the beach in.  It was so much fun and I am glad I got to go.  I love the ocean.  I did find myself in a rip tide and didn't do so good in it.  I was riding the body board and I wasn't really going anywhere except towards the peer, so I hopped off the board to try to swim better and I heard a voice over the loud speaker telling me to get back on my board and the lifeguard was coming to help me.  So the lifeguard helped me get back to shore.  Kind of embarrassing but I was happy I didn't know anyone at the beach.  Good times.  
 We also got a quick trip to Disneyland in.  We went at 4:00pm and stayed until midnight.  It was fun but so crowded.  It wasn't really the highlight of the trip.  I didn't get to many pictures because it was dark and my camera phone doesn't have a flash.

Tanna has been wanting an Elsa dress for a long time now, so I waited to give her this because I didn't want her to feel left out that me and Tayton got to go on a trip.  I told her this was from Disneyland but really it is from Walmart.com.  I just didn't want to pay $60.00 for a dress.  She is loving it and so thrilled.  I think the timing on it was perfect.  Blakeli doesn't really play with toys but she does love candy.  So we got her some jellybeans and I think she was super thrilled with that. 


But I am so happy with how well things are going physically for Tayton.  He is doing so great and I feel like I can finally relax.  It felt like it was this huge uphill battle, and we are on the downhill.  The hardest part is over.  I know we will still have more surgeries ahead and other trials but I am enjoying the good times.