Day Care, Feeding Tube, and More

Joshua survived his first days at day care =) They have worked with him on his PT and have done many activities with him. The experience has tuckered the little guy out . . . he doesn't nap more than 40 minutes at a time at day care. The first night he slept from 6:30pm until 5am the next morning! The second night he only woke to eat and so far tonight he hasn't woken up yet. I barely remember what my babies eyes look like!

Our care giver also started this week and she's great! Right now she comes over from 10am - 2pm, but once Joshua's time at the back-up day care ends she will start at 7am. She is able to lift me, which you wouldn't guess because she is a little thing. In addition to taking me to the bathroom and feeding me lunch, she does laundry, dishes, made us a casserole for dinner, cleaned Joshua's room, and more! It's frustrating that I am not able to take care of myself and we have to pay someone to "baby sit" me, but the extras she is doing for us will make life much easier for Bob and Tana which makes it worth while.

On Mon. I'm having a spinal tap for the drug trial. The trial requires a spinal tap before and after so they can look for changes. I will be starting the trial drugs at the end of the month, so more info to follow.

I go in Tues. for my feeding tube (PEG). I thought it would be outpatient, but I'll actually be admitted to Banner Good Sam and, if all goes well, will only be there one night. I can't press the call button on my own so Bob will be staying with me and Joshua will be going to my Mom's. Even though I can chew and swallow, I don't always get the nutrients I need so the PEG will ensure that I do. More importantly though, the procedure can become complicated once breathing (FVC) drops below a certain point and I'm at the brink of that point now. So, we're going forward with the PEG now because it will be safer for me. I won't have to use the feeding tube though, unless I am not eating enough.

That's all for now . . .