Memorial Day 2010
June 1st, 2010 Posted in Daily News PostSomething just hit me today. Most of you who have been providing meals think you are just helping out Dana, Colin and, sometimes, me. However, the reality is that Chloe has been taste testing every meal you have brought to the house. And she has loved every one of them. She can’t swallow any of it yet but she does get a plateful of food and sits down with her fork, suction machine and spit cup. It’s quite the site and makes a very unique display of ABC food. Colin gets grossed out… that’s just a side benefit of it all according to Chloe.
It’s acknowledged often here that the food help is so appreciated. One reason I feel it necessary to thank you publicly is that when you arrive in person it is often during a time that Dana is just going 100 MPH or is completely wiped out. Yesterday for instance… She had a few hours break and decided all she wanted to do was separate herself from the world. I stayed home in order to help with that. It almost worked, with just one visit and no phone calls. She hopes she wasn’t too bad to the one visitor, but that’s always a concern of hers.
This weekend didn’t pan out just the way we planned but it wasn’t a total washout. Chloe did have her friend over to practice the duet they will be doing for the talent show. And today, Dana and Chloe went to Trader Joes and Albertson’s for quite a bit of walking and some shopping. Chloe had an idea of some deserts she wants to make so they got the ingredients. For Chloe to want to go out in public it’s big, very big.
Unfortunately, Dana is getting sick today, sore throat, etc., so she asked me to help with the CremBrule (Sp?). Oh shucks, I had to help Chloe… We had a ball. It was much more fun than working on the deck. She did a lot of the work. All I had to do was the lifting and pouring. She separated the egg yokes, even the double she found. She added the cream and heated and stirred it until it was ready to pour into the egg yolks that were on the mixer. What she hadn’t factored in was the wait time before eating… Guess it will be breakfast or lunch tomorrow.
With Dana sick I’m on night duty tonight. Chloe was pretty bummed about that as she really looks forward to having Dana spend the night with her. She was quick to point out it wasn’t about me… Glad to hear I’m still in her favor. However, with Dana sick, Dana didn’t really want to be laying there breathing on Chloe and getting her sick. So, Kitty is inside and has food and water, and I’m available to be here overnight. It was a no brainer.
Chloe is talking more and more now. It’s so cool to have her say hello to me when I come in now. I’m so used to “the voice” that it’s a pleasure to hear. And then we have full conversations together. She spoke to me with the Pasi-Muir valve off and just her, somewhat, normal nose on. Then Dana told me she is even talking with her cuff inflated. This is big as it means her vocal cord is working better and better. The left may even come into play soon. And one more thing… she had a very successful swallow tonight with some sherbert. When Dana told me that, I said to Chloe “you may just get your ‘before school starts’ wish.” She said, “Before Colin’s Birthday. We’ll see…
Tomorrow we will be back at Doernbecher’s for OT with Beth. Steve is on vacation so we won’t have that pleasure, but Beth does a great job motivating Chloe to get going, especially when we enter the gym. I think Chloe is more starved for working out in the gym than the two of us are. God knows we all need it!
Time to get the boat ready… you’ve seen the weather report I’m sure. When you come for a visit we won’t be hard to find. We’re the house with the arc in the back yard.
Be well,
Ron
3 Responses to “Memorial Day 2010”
By dana watts on Jun 1, 2010
Its true. Chloe’s homework each week is to have 10 swallows per day(as tolerated) of sherbet, liquids, yogurts or puddings. plus tasting anything. We do have to thin out the yogurt/pudding. This wakes up the muscles and reminds the brain”oh yeah, I remmeber how to do this”.
Thanks to everyone. Its not really about the food. Its about the return you are giving her towards a regular life and for her, yeah ok, its all about the swallowing, eating. She has visions of cheeseburgers dancing down her throat. Thanks again for the help on that ….everyone matters. Go Team Chloe.
Thanks Ron for staying an unpredictable night for her care. Sick wasnt in my plan today.
By dana watts on Jun 1, 2010
PS TODAY JUNE 1 IS JEREMY’S BIRTHDAY!!!!! HAPPY BIRTHDAY ALL MONTH NEWPHEW!(HE MADE THIS WEBSITE BTW)
Auntie loon
By Kat~ on Jun 7, 2010
I’m so happy to hear this good news !! Seems like things are happening for her now, one step at a time, but isn’t that how most everything gets done ? The foods Chloe is tasting and making sound sooooo good, wish i could come and help taste test 🙂
So sorry you’re getting the yucks Dana, hope by now it’s getting better !!
Love to you all !!