Amber and I are adjusting pretty well to being back at home.
She seemed not so keen on being home the first couple of days and still does not like being left alone. She was spoiled having someone by her side 24/7 in the hospital. She's been extra adorable lately! I think she's feeling so much better not having her intestines pushing up on her lungs all the time! She's also healed up nicely. We were worried about her g-tube site because of some bleeding but now everything seems great and she no longer needs any pain medication!
For the rest of us adjusting is harder trying to get on a good schedule with her feedings and medication. I'm trying to not let it all rule and stress out my life but at the same time I don't want Amber regressing at all. We have four hours of bliss when Amber is not hooked up to her g-tube and I would like the time to increase not decrease! I've found a pretty good way to organize all the feeding bags and g-tube paraphernalia. Now I just need to figure out how to organize her new feeding things and all the information I'm supposed to record all day. On top of the new things I'm doing daily I need to get back to (well more like get into) a routine to take care of all the normal house things too.
There really isn't too much else going on. All of her follow ups are scheduled, not as soon as everyone was hoping for but that's what happens when you see really good Dr's. Amber starts back up with early intervention again tomorrow and then has her surgical follow up on Friday. We're beating the heat, having our air conditioners going all the time! Amber has a very hard time breathing in the heat so she is not going out side much. I hope the rest of you are beating this heat!