He was happy because it was an out patient and we got to go home that same day. And we don't have tv at home (too many other medical bills) so he loved watching the Disney Channel. I think that is why he was mad in the video because he was glued to the tv.
Oh root beer slushies, how we love you! Too bad outpatient doesn't have chicken tacos. But we stopped at Taco Bell on the way home and he got some tacos.
Then the next day we were at physical therapy, getting right back into the "swing" of things. He loves it there. We ended up going back to weekly apts because he is so tight again and doesn't have full motion any more.
He was going to do another laser treatment on St. Patricks Day, but that has been cancelled. Basically the doctor says he keeps getting infections because his skin is so unhealthy. Your skin is your biggest organ, could you imagine if your heart looked like his hands. He just needs new skin. So we were going to wait until summer to get skin grafts done, but now they don't want to wait that long. So it looks like April. He will be in the hospital at least 2-3 weeks. It is hard because I don't know which kid to take care of. Do I leave my little Blakeli and Tanna that long, but I can't leave Tayton there all alone. So I guess we will figure it out. I am so glad I have amazing family and friends to help me out. I don't know what I would do without them.
And since he will pretty much be missing school all of April and May, I decided to put him back in school. So we start school Tuesday. He is so excited. I am too, homeschooling is not my favorite. But I am a bit nervous, there is a big outbreak of whooping cough in Weber County. He has been vaccinated, but he just can't get any serious respiratory problem or it could be bad. He needs school though. I guess I am a pretty boring teacher.
I am scared for skin graft surgery because last time I didn't know what I was in for, this time I know and I am wondering how do we do that again? But I am excited because I feel that this time it is going to go so well and he can finally start to recover. It might be another year in compression garments, and another year of physical therapy, but after that he should be doing great and then we can really focus on just his airway and getting that healed, instead of his hands and airway. And then we can work on his airway and then, just then, there might be a light at the end of this very long, very dark tunnel. I am hoping! One thing I have to keep reminding myself is that when Tayton was soooo sick in the hospital, I kept praying to Heavenly Father to keep him here. I said "I don't care what it takes, or what I have to do, just keep him here." And he is here and I have to keep my end of the bargain. Sometimes I wish I would have been more specific :)
Everything else is going good. I have spring fever so bad. I can't wait to go outside and ride my bike, or go for a walk. I love spring, I love summer and I am so excited! I am also pretty happy that Tayton doesn't have to spend all summer in the hospital. This summer we all ready have so many fun plans. We want to do swimming lessons, summer camps, picnics, park days, burn camp, camping, hiking, we are going to Bear Lake with my family, hopefully a river trip in all of that. I am just looking forward to fun!!!! Tanna's goal is to learn to ride her bike with no training wheels. Tayton still wants to do the monkey bars, and I am guessing Blakeli's goal will be learning how to walk. She is growing up too fast, I don't know if I am ready for that but it is fun to watch her grow. So I hope spring and summer come quick, I am sooooo excited! Here is our little Blakeli, and this is what dinner time at our house it like.
1 comment:
Post more videos!!! Love them! I hope all goes well with Tayton. We pray for him every night. Love you.
Post a Comment