This is hard

John has been home for 9 days. Exactly the same amount of days he was home after his Allo transplant before going back to the hospital for 20 awful days. Everything is going ok. It is just hard.

John is super weak and tired. It totally wears him out to come up the stairs. He is slowly gaining some strength though. Yesterday he made dinner. It was hard and very tiresome for him. It is funny how I never thought about stuff like that being hard for anyone. He starts out patient physical therapy tomorrow. That should help a lot. He is trying to walk every night - at least one mile. Earlier this week he went with us to Silver lake and walked that one mile trail. And today we drove up the canyon to make s'mores. He went too.  This is a picture I took of him with the kids today up the canyon.

John's mind is still slowly clearing. He still has some issues. He doesn't remember everything. And has trouble sometimes figuring out how to say something's. Yesterday he was talking to someone and said he never had GVH. I was like WHAT ??? And had to tell him he has (has) GVH of his stomach while in the hospital. I had told him before and he had read it. But some how that fact did not stick in his brain. 

He is on a lot of steroids and those are making him irritable. He tries but is not very patient these days. His blood sugar is high from the steroids so he still has to do insulin several times a day. Can't wait to be done with that. Luckily no nausea and he is eating pretty good. Not gaining much weight back but he is definitely eating. 

He is at day 52 post transplant. At day 100 they do a bunch of tests to see how well the body is responding to the transplant. Can't believe he is half way there. 

Sometimes I can't believe how much our lives have changed. It is hard. We are half way through summer and haven't done anything. My kids so badly just want to play and go camping. But we can't do that yet. It sucks. I am really trying to plan fun little things while we can. But I am having a hard time helping John, taking care of the kids, taking care of the house and yard, shopping, errands, cooking, cleaning, and taking care of me. I'm having trouble sleeping which makes for long days. It is so nice to all be home but it is just hard.