I had planned to do the update on Palm Sunday, because that was the day we got the call last year and found out that Jaxson had a possible donor. But I got sidetracked that day and due to Easter moving around, I guess April 5th was really the date, so I am not even really late. I think his surgery was the next day on the 6th if I remember right. It has been an awesome year and he has progressed so far now, way more than we ever expected when he left here a year ago.
He still has the trach in as well as the broviac and stoma but all that should be removed soon. He was supposed to have a one year check up in Pittsburg a couple weeks ago but Katie and her fiance' split and she had to postpone it because she could not afford the rent alone and had to move.
She took Jaxson to an appointment with the GI Dr a couple months ago and asked if the trach could come out and he said he was not sure, it was up to the ENT Dr. That appt. was a month later and and she asked him and he said he did not know, it was up to the GI Dr. She told him he said it was up to you and asked can you call him and work this out because he has had hiccups for months now which means his diaphragm is working again.
Transition to real food is proving difficult... Awhile back she had him try baby food bananas and he loved them but that is all he would eat and next time they did labs, his potassium was way high because they have him on a regulated amount already so they asked her to stop the bananas. She had not found anything else until recently my wife gave both him and his sister a black raspberry ice cream cone. He ate some of the ice cream but not the cone. A week later he was asking for more of it so we went and got more of it for him and he has had it a few times now.
He had a nurse that was coming to the house daily and staying with him (somebody trach certified has to be with him at all times while he has the trach in) but a few months back, she split with her husband and moved back to Utah. My wife filled in so our daughter could keep working and they never replaced the day nurse, it just became my wifes job and now she watches him and helps him with his online virtual school. His progress really is nothing short of amazing to me just being active and getting stronger. He had a growth spurt and shot up a couple inches and thinned right back out. When I mentioned that the other day, Katie said most of that was swelling from the steroids he was on at the time.
Here are a few current photos... The last one is our Easter photo of him and his sister. For reference they were almost the same height when he came home from the hospital a few months ago. Jaxson will be 8 on the 25th and Paislee will be 5 next month on the 24th.
