Ben lost another med today! Woohoo! The APN called and said the results of his holter looked good, so we can take him off of propranolol. This is exciting for many reasons. First, losing meds is always a good thing. It means he is getting better. Also, losing this one means we can go down to giving meds only 2 times a day. He has 6 meds he needs to take daily. 4 at 7 am and 5 at 7 pm. Before, we were giving meds at 6 am, 7 am, 2 pm, 7 pm and 10 pm. But, even that was a drastic improvement from when he was first discharged to Kohl's House and we were giving meds pretty much every 3-4 hours. Ben is also making great improvements with his gross motor skills. He is able to stay on all 4's for a few seconds (if we put him in that position) and he is able to sit for about 5 minutes on his own now before plopping over. Today, he started imitating Abby when she was bobbing her head along to a song in the car. It was the cutest thing to see his little head bobbing along to music! His sisters love him so much and he seems to love them right back.

Our next cardiology appointment is not until September. But, we will be going for labs in 2 weeks. At his next cardiology appointment, they will do another 24 hour holter just to make sure his heart is staying ok without the propranolol. But, they don't think there will be any problems. They are also going to keep checking his hemoglobin levels. They have been a little low the last couple of labs. This may be due to him being on Valcyte which he just came off of 2 weeks ago. They are hoping with the loss of that, and the addition of iron drops, that his hemoglobin will go back up. If it doesn't, he may need to go off of Bactrim. Which, normally I love losing the meds. But, most transplant kids stay on it for a year post transplant. So, we don't really want to have to lose that one. Otherwise, everything is going better than his transplant team even expected. :)

Benjamin is doing VERY well these days! We are down to only 7 meds now and they are given 4 times a day. We are also down to cardiology visits every 2 months now. We do still have to go for labs about every 2 weeks. Since Benjamin is growing so quickly, they have to make sure his Prograf and Cellcept (2 anti rejection drugs) stay at a therapeutic level. Benjamin is also doing very well with his physical therapy. He is sitting up on his own now and is learning to side sit so he can safely get down on the floor from that position instead of just plopping over :) He also will stay on his hands and knees if I put him in that position. He can stay there for about 15 seconds. We are so pleased with his progress! Ben had a holter monitor done last week and we are hoping that the results will be great and we can get him off of propranolol. Just losing that med would mean we could go down to meds only twice a day!

I am still just as nervous about germs though. We don't go around people that we know are sick, we try to only go out to eat when it is not peak hours and try to be seated away from others, if possible. I also bring sanitizing wipes everywhere. I even sanitized the swing at the park when I wanted to put him in it and I always use a shopping cart cover. It can be exhausting sometimes, but it makes me feel better to think that I am doing whatever I can to keep him safe. One of those things includes getting his vaccinations next month. He will be starting with the DTaP. I am anxiously awaiting this one since there are outbreaks of whooping cough in our areas :( Whooping cough could be deadly for him. So, it really makes me feel better to know he will be slightly more protected against it.

Ben's next appointment will be in September and Abby will be going with him as well. She has a follow up for her PDA procedure. The new Children's looks amazing, but the parking is a bit more expensive and it's a little confusing to get to. But, other than that, it is a really great hospital!