ChloeWatts.com

Wednesday, January 27, 2010

Dana had to do some business at the business office this morning so Chloe wasn’t as effective during PT/OT from what I heard. I’m sure she did okay but just didn’t push to her limits as when she has an audience and the comfort of Dana or me to be there as her safety net.

When I arrived at the room she was in bingo again. Today was special. It was the first day she only won two of the three games. Amazing! She ended up with two more beanie babies… not amazing. Pretty good ones though, a beaver and a dragon… I picked them out… (pat, pat, pat)

We had Eric drop by the room, per my request. Eric is the Nuero-Mon who monitored Chloe throughout the operation and was first to see the wave pattern change on Chloe, denoting something was amiss. Dr. D stopped immediately at that point. So we applaud Eric on a very important job, very well done.

After Eric was here we realized we had used time dedicated to PT… woops. Jewel was great about it though and came to the room. We all took a stroll around the unit. It’s the first time most of the unit had seen Chloe walk and it was like the Macy’s Day Parade! I was walking backwards in front of Chloe who was with her walker and Jewel for support, followed by the wheelchair walker and Mama. I was Chloe’s target. When she walked to me she was going to be able to kick me. I swore I would stand still… with a little moonwalking when she wasn’t looking. It was a LOT of fun for everyone. Sarah and Chris even showed up for the demonstration. Chloe made it all the way from the room to the nurses’ station, about 80 feet!!! Then she kicked me with her right foot and sat down.

Kate was next on the list for art therapy. Chloe loves this and is working on a cool box for Firebolt to hang out in when she finally gets to see him again. Unfortunately she needs the trach to be gone before that can happen. Just too many germs are possible with lizards.

Dana and I wheeled Chloe to the art studio and, as Dave was going to be there in 10 minutes, we left to do more business at the business office. We need to get the paperwork in for OHP by tomorrow and there were some paperwork questions we needed clarification on. We got back just as Katy was wheeling Chloe back to the room. Dave got hung up someplace but Chloe only needed a little suctioning it was handled.

Dana is getting some relief finally. She will do cave time until the birthday. If she doesn’t get some sleep soon she will cave in. Her desire is there but her abilities are being stretched past their limits. Between being sleep deprived, worrying about Chloe and a multitude of other things, and her tendonitis in a full flair-up, she’s been a mess. I hope this break will be very healing for her. Chloe and I will hold down the fort and do some heavy lifting and such. I just am not allowed to walk her to the bathroom and hold her on the toilet. I guess that’s a good thing for her. She’s had to give up way too much of her modesty.

Our day starts at 10 tomorrow so maybe she can sleep in. I’ll have a doctor or two to talk with in the morning but Chloe doesn’t need to be involved in that. We are trying to decide on placing a stomach tube in the near future. Dana and I would like to see the nose tube “life out” before putting Chloe through more surgery. Some of the decision will be based on if the speech therapy will go better with the nose tube gone or not.

The star of this story is sleeping soundly now. Talk to you tomorrow night. BTW I forgot my cell phone charger if you’re trying to call me…

Be well,
Ron