Kayla Quote: "I said the whole pledge of allegiance. I put my hand on my heart and I said it." - 6-year-old boy whizzing by on his bicycle
Short Synopsis: Kayla had a great day today. She was on the trach collar for 5.5 hours with a little bit of oxygen piping in, a record for her. She spent two hours in the chair by her bedside, another good sign.
Physical therapy comes by every day now. The goal is to get her up and moving and then her lungs will benefit by the activity and work better. It is a big process getting her out of her bed. There are usually 3-4 people involved. The main person is the physical therapist. She is the leader orchestrating. Another is a stronger man for lifting and helping with her body. A nurse and a respiratory therapist are also involved.
They get situated and Kayla sits up and puts her legs over the edge of the bed. Her cable lines to the machine are made straight - kinks could cause trouble. Her respiratory tubes are set straight as well. There are many tubes and wires to put in line as they get set to get her off the bed. You don't want the lines to get caught or tugged on.
Kayla gets up and out of the bed. She stands at the side and then she puts her feet back and forth and gets those muscles going. This goes on for 10 minutes. She is feeling pretty good but there is some pain in the middle. Best news is that the pain has lessened now - it's still there, just not quite as acute.
She then moves over to her chair and turns around to sit. The man is assisting her on one side and the therapist is on the other, each with a hand under an arm pit, ready to hold her up if her strength is not there.
She succeeds! She sits! She is on her way!
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When I wake up in Ridgefield, I am happy as a clam. I have finally gotten a really full night of sleep. I plan to make myself some eggs and have a relaxing morning. I am so happy I go to Mike and ask him if he wants some eggs - I will make them for him too! He says he has to leave for work right away.
Mike no longer does his incredibly healthy morning routine of eating a big bowl of grain cereals and soy milk topped with fresh fruit. He did this for years but now he is working hard with his growing company and does not have time for this good morning breakfast. He has a new shortened routine - he goes to the freezer and takes out different bags of frozen fruit and puts a portion of them in a container and runs out with it. Perhaps he also takes a glass of soy milk - not sure.
I make my own eggs and then Thomas walks in to the house...
"Want some eggs?"
Thomas is surprised and says with a slight hesitation, "Sure, Mom." He sits down to watch the news and write a list of car parts he needs.
I make him scrambled eggs, his favorite.
"I feel like I am on a vacation, Thomas! I know it's ridiculous, but it's a wonderful thing to be home for a few hours making eggs."
In the afternoon, I am scheduled for the second day of watching a 3-year-old girl and her 10 month old sister. I am ecstatic to be in the normal world of working, even for the few brief hours I am scheduled for. I feel like a grandmother cherishing little ones and getting paid for it. It is absolutely delightful to be with this mother and her small children.
The mother goes out and I am to take the girls on a nice stroll around the lake in their fancy strolling carriage. We see a little boy who is having fun biking. He follows us for a bit and I have conversation with him. His Dad is gardening and making their property beautiful for the Spring, putting in flowers and raking the earth. It looks beautiful.
"Dad! Dad!" he yelps, "I said the whole pledge of allegiance and I put my hand on my heart and said it. Whoa...I almost fell."
Yeah USA. Everyone in the country is patriotic over the last few days. Evil Osama bin Laden has been shot in the head and killed. He was hiding in a fortress in the middle of a city in Pakistan, right out in the open. Six years he has lived in this compound. After a decade long man-hunt, a small Navy Seals strike force goes in and kills him. They bury his body at sea, the Muslin way, and it's a good thing. There is no body for fanatical people to worship. The government is debating whether to release photos of his dead body.
After master-minding and killing thousands of our American co-patriots at 9/11, in New York City, the most wanted man in the world is dead. Everyone in America is celebrating this.
Even the small bicycling riding boy feels it...
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Kayla had many visitors today. Cousin Daryl and my sister Valerie came in the morning. Carlos came in the afternoon after a clinic visit for his lungs. My friend Barbara also came in the afternoon and met Carlos.
Deirdre and I came at 9 p.m. and stayed until midnight. I fell asleep with my face on the side of Kayla's bed. I could not stay awake. Kayla tries to wake me up. I could not open my eyes.
I wake up and at midnight, I am refreshed and ready to drive us back to Tarrytown...
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May 3, 2011
Hi Stephanie:
Yes, I extended my stay in order to be around for the procedure, which never took place, but now I must go.
I met the apple of your eye. She is a lovely girl and please tell her I'm rooting for her. The first time I went in with Beth and my cold compress with ice cubes spilled out all over her. The second time, Kayla motioned for me to stay, but one of the kapo nurses told me that I needed to go, so that Kayla would go to sleep.
Be strong and keep the faith.
Aaron
P.S. Your mom is a DOLL!
(Aaron must have gotten Kayla a washcloth full of ice to help her with the heat.)
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