ChloeWatts.com

Thursday, Jan 21, 2010

Today started at 3 am with suctioning and cough assist. And, at 7:30 pm we are still going at it, just finishing up 45 minutes of beach ball. That’s one activity she’d rather never quit. She hits it with both hands and both feet. Her accuracy is quite good with everything, the right leg being the least cooperative.

This morning was filled with suction and fatigue. All throughout PT/OT she fought through it but was very sleepy. PT finished with a 60-foot walk with the walker and only one break. This was really the highlight of the day. When I asked her a little while ago how she felt about her walking she gave me the flat hand wave, indicating “ah… whatever.” I told her how much she had improved and asked her if she believed she would eventually be 100%. There wasn’t a hesitation with the yes head nod. If you saw the determined look on her face there would be no hesitation with you either.

Dana was able to get away for the afternoon and evening, finally. She left about 1 pm even though we had not received the word about an upcoming trach change sometime today or tomorrow morning. Dr. Cuyler dropped by and told us it would be 8:30 am tomorrow. We are so relieved that the doctor will be doing the change this time. We need our confidence rebuilt after the last change.

We were in the middle of speech in the room when Uncle Kevin came in. I think he was pleasantly surprised with what goes on during that timeframe. Chloe was able to gag much better and she is feeling cold easier as well. After Speech we went to School where she did math. She really understood it well and was able to write some of the numbers on a separate paper, with her left hand.

Next it was off to Psych with Margaret. Kevin was with us the whole time and he even showed Chloe how to use Spirograph to make some designs. She worked with that with high intensity.

At about 5 pm she was wheeled off for a bath. When she comes back from a bath she looks like a mummy… the nurse said Little Mother Theresa. I joked “Not” and Chloe laughed.

While we were playing beachball, Chloe hit a hard, fast one off to the right… just as Nurse Pat entered the room. Chloe fell back in the bed and laughed just short of peeing her pants. She loves it when she does something that cracks herself up.

We are hoping for a great night tonight. She should be tired enough. Now it just depends on how bad her secretions are.

Be well,
Ron