We came home from MN on March 5th. It will be about two months until we find out if Raul is approved for the trial. If he is approved, we would likely head back to MN in the Fall. On the 11th he got an iron infusion. We had discussed whether to do iron or blood as he was a bit symptomatic (tired and tachycardic), but we want to hold off on blood as much as possible if transplant might be in his future. So he got iron, and will start to get iron more regularly to try to keep his levels up. While he doesn't like getting poked, Raul likes the infusion center because they always have good toys and crafts!
Getting his iron infusion
On the 18th Raul got his new power chair! His power chair has a seat to floor function so that he can scoot in and out himself and not have to be transferred. He does a great job driving it, and is now using it exclusively at school. It is very exciting for him to finally have this sort of independence! We are looking into getting a wheelchair accessible van so that we can take it more places.
Singing the weather song
The night of the 19th we spent several hours in our local ER having Raul's hip looked at. He has osteopenia and abnormal hip joints, so is more likely to have serious hip injuries. His hip had popped while we were doing bandages, and he was complaining of pain, but luckily by the time it was x-rayed it was not dislocated and there was no fracture. The ER doctor said he may have partially popped it out and it popped back in. On the 31st he was seen by ortho. and had repeat x-rays. He was fine with them moving his legs around, but did scream when they touched the area. They said the popping could have also been tendon or scar tissue, and that at this point it may be more of a muscle issue since his hips are tight. We will follow up if he continues to have pain.
Raul asked me to make a tent for his bed
Raul has not been able to take full baths regularly in a long time due to how traumatizing and painful it is for him, so we usually just use soaks on individual wounds. I tried a bath in September, and it was just as bad as it used to be. I tried again on March 21st, and it was actually a bit better! He still screamed and was unhappy, but it wasn't as bad as before. I'm not sure if I just got the timing right with his meds. or what, but I am happy it wasn't too bad! I put him in with his bandages on, and took them off as we went. He watched Mighty Machines, splashed a little, and popped some bubbles I blew.
Splashing in the tub
At the end of March Raul started to get a bit more tired and pale. He started to have fevers, and it was hard to tell if it was viral or infection, so we went to the ped. They ordered a blood culture to be added to his labs with his iron infusion, and started him on Bactrim. They thought he looked pretty good for all the fevers he had been having, and luckily his fevers improved quickly with the antibiotics. His blood culture was negative, but he was quite anemic on the day of his infusion (April 1st). He continues to become anemic more quickly, and is not always producing red blood cells properly. His next iron infusion is scheduled for April 27th.
Showing off his crafts he made during his iron infusion
Playing with foamy soap at the infusion center