ChloeWatts.com

Thursday, Jan 28, 2010

January 29th, 2010 Posted in Daily News Post

Chloe had a great night last night. She slept through all the suctions I did starting at 3:15 and running through when she got going at about 9 AM. So I guess I had a night like Dana has been having. However, I haven’t been doing it night after night.

In the morning the gastro doctor came to discuss the procedure of putting a stomach tube in vs the nose tube. It’s another surgical procedure and they had it scheduled for Monday. However, we were only in the discussion stage and didn’t mean for anything to be scheduled yet. He was great about it and said it just takes three days to set it up. He cancelled Monday. He also told me there were two different procedures, one that was done from the inside out and the other was more surgical and was from the outside in. The former is supposed to be the least invasive but it also means that it will be a two-stage procedure. The first would be a tube and would stay in place for six weeks. Then a plug would be placed. If we went the surgical route the plug would be placed right away but the procedure would take more healing time and has a few more risks.

I think we are going with the former but we are letting Chloe be a part of the decision. We also want her to understand the procedures and the benefits of each.

PT/OT was about an hour and a half and went well, although I believe Chloe was a bit distracted. She was in thoughtville throughout the workout. First up was paddleball with a beach ball. Next it was weight training while standing at her walker. That was going okay until she dropped a one pound weight on her toe. That set us back a bit but we did recover. After that her feet were covered by two layers of pillows. She didn’t drop another weight on her foot… but did on Michelle’s.

Then we were off to a set of stairs in the gym. She walked first to a chair at the base of the stairs. She rested a moment and then climbed the stairs. She did very well, although she thought she was going to fall over backwards at one point. There was no risk of that with Michelle right there.

She went on a scavenger hunt to finish the session. She walked out of the gym and down the hall. When she found something on the list she’d have to stop and mark it off the list. It ended at the bathroom. How convenient.

We were upstairs for speech and schooling. Speech is showing more and more signs of sensation every day. She actually said the coke was too strong today. And her gag response is coming more forward in her mouth. Every bit forward is a great thing.

School also went very well. She is doing very well in her math and is spending time writing her own answers. Her writing is getting a little bit better daily as well. Of course she won’t be satisfied until she has her pretty handwriting back again.

Dana stopped by for a little while during the end of PT/OT as she had a little more to take care of at the business office. Chloe sure liked seeing her. So when it came time to leave again Dana picked a busy time to say goodbye for today. Then tonight I noticed Chloe was emailing with Dana. Even though Chloe says Dana has to leave and get some sleep, she really would rather she stay all the time.

She has been on sterile room air almost all day with just a little change to oxygen before going downstairs for her hour with Margaret. All of her bathroom breaks have been on foot! She still won’t try it without her leg wraps but I think that’s coming soon. She is really moving quite well, all things considered. She can almost sit up by herself. And she motors right along with minimal support from behind. Still can’t get on and off the bed by herself but that’s probably because she really doesn’t know where her right foot is going at any given time.

We are hitting the hay a little earlier tonight to see if we can get a full night of sleep. She did pretty well but I’d like to see a little less suction needed. She’ll be on oxygen overnight. She will wake up tomorrow an eleven year old! Of course we all know she is actually Twenty-Nine.

Be well,
Ron