Jack being home is wonderful- I do know that. But it really hard, and very scary. With the history, it is hard to be like "oh good, we're home, life can get back to normal" because that is not the case. Jack is home, and wants to do "home" things, like eat macaroni and cheese, slide down his slide, go on trips, go up and down the stairs without cords chasing him. Sleep in his room without something that sounds like a generator running constantly next to his bed.
Sometimes he seems so sick that I feel like he is worse than when he was in the hospital. He is SOOO skinny, even his pajama's don't stay around his waist. He is so frail and weak, he looks like a malnourished little infant. It's really scary for me to watch him barely eat anything and then have to force down medicines that make him feel horrible.
However, there are good times. He wanted to swing on the swings today and really enjoyed it. We had a "picnic" outside our house by the stream and we fed the ducks. I took him to the store upon his request and he told me "Mommy! I feel better!" which REALLY makes me feel good, because it's straight from the horses mouth.
Sometimes I feel totally lost like I can't tell what is supposed to be happening, whether things get worse before they get better, or if he IS getting better. He's had a slight temperature around 99-100 today and I'm sick thinking about taking him BACK to the hospital, and experiencing his devastation to return there. I have to do that on friday for x-ray and labs...I'm not looking forward to that either. I think that this time around it is more of our heads that have been worked on than anything else. I'm hoping that all we need here is time, and that I can make it through however much time it is going to take.
Thanks to everyone who is helping, and everyone offering to help. I know it's frustrating when there is nothing you can do. I feel that everyday.
I'm hoping that friday comes and we have nothing but good news, and that we can go down on his med's. Because each time we take them he is reminded of the hospital, and I want him to feel safe at home.