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~Updates 2004 to 2008~
  March 6, 2004. Caressa did something new today! She's twenty-eight years old. I put a few tiny squares of cheese on her wheelchair tray, like I do, and put one in my own mouth, looking somewhere else, like I do, so she won't respond by throwing hers on the floor. I chewed noisily on my cheese, peeking out of the corner of my eye at her. She was watching with a half-smile on her face. She watched me eat the second, and third squares, and then she picked one of hers up in her hand, and reached it toward my mouth! I leaned toward her, and she put it in! I ate it, noisily, with great gusto, and her eyes sparkled and she held her hand against my lips! I could not believe it! "Num, num, num!" I exclaimed, smiling at her. "Thank you, Caressa!" Then she picked up one of hers, and threw it on the floor, grinning at me. I walked away then, recognizing this game. A little later though, her remaining piece was gone. She must have eaten it. I never found it. That was the FIRST time she ever tried to feed me! These are things a mother never forgets.



  March 8, 2004. Lest I make Caressa sound like too much of a peach to take care of, I'll share this evening. Caressa was a little pill tonight. She did everything mischievous that she knew how to do. After I got her all tucked in to bed, I went to get her night medicine, and she pulled the plug out of her tube, and her feeding emptied itself out all over the bed. She was splashing happily in it when I came back in. So I put warm water in her tub, undressed her, and tried to put her in it ... she stiffened her legs out straight so I couldn't. (Usually she curls up in a fetal position, and its easy.) I put her bottom in, and then put her legs in. While I was stripping the bed and putting clean bedding on, she splashed all over the place, laughing. (She usually settles down to play with bubbles calmly.) I got her back in bed, and she fought hard against getting a clean nightie on. Laughing like a hyena, she thrust her arms every way against me. When I reached in the sleeve for her hand, she pulled back. (She usually sits fairly passively, though wiggly, while I dress her.) I finally got it on, and she fought the diaper. Each way I rolled her, she rolled the other way quickly, her eyes glinting with teasing. I know she noticed I was not smiling, so finally she thrust both her index fingers into her nostrils, and slowed down. I was slightly out of breath when I tucked her in the second time. I turned her music on, gave her the medicine, and turned the lights off. I'll have to give her another feeding later, while she sleeps.

  I went out thinking about how normal babies do the same exact thing. But they don't weigh a hundred pounds, and they're not so strong. I stood outside the back door getting some fresh air, and listening to the creek run. It was sunny today, and a lot of snow melted. The creek is lively. These things are really such very tiny problems, and she doesn't do it very often. I came in and sat down to write.

  I'm thinking now about all the times in my life I have done exactly the same as Caressa. I did what I wanted to do, and ignored what God wanted me to do. And He loved me anyway. What great and pure love He loves me with! And I see that these little problems are good for me, if only to remind me of how immense God's love is. And to humble me a bit.

  June, 2004 - My darling daughter will soon be twenty-nine. Cassie is thirty-eight, and Joey is twenty-one.



  My three helpless children truly enjoy being together. I am so happy, on this sunny day in the mountains. So grateful to God.

  It's September 22, 2007. Caressa is 32 years old. She has fallen in love with the DVD called "I'm Your Man" - about Leonard Cohen. She glued her eyes to the screen immediately, rocking back and forth, and smiling. She's crazy over his songs. They're love songs, and slow, with a strong, passionate rhythm. She holds the bed rails, and rocks her self back and forth in perfect time! I think my girl is musical!

Cassie is 41, and Joey is 24. It is a good and peaceful life here in the mountains.



  May, 2005 - It's been nearly a year since I updated here. Caressa will be thirty years old soon. She is still exactly the same sweet little girl. Last night she shared my fried chicken with me, with great gusto. Just a few bites, as always. But it's always good to see her enjoy eating something, to supplement her tube feeding. Cassie is thirty-nine, and Joey is twenty-two.

  October 22, 2006 - Now Caressa is thirty-one. I discovered one more thing that she likes to "eat" this year. If I cut a piece of pizza, and pick off the good stuff, she will turn it upside down, so the tomato/cheese flavor is against her tongue, and she'll suck on it for the longest time, like a baby with a teething biscuit. (If I leave the good stuff on, she'll pick it off and throw it around the room first.) I am positive now that she has Angelman's Syndrome. She's not diagnosed, but I am sure. She's my happy little girl, and I love her so much.

  July 27, 2008 - Caressa is 33 years old. Last February, I began experimenting with adding some baby food fruit, then vegetables, to Caressa's canned formula. It did not cause her to have any additional gagging. Instead, she WAS able to cope with a few additional ounces per feeding. This was remarkable, because she would be flung into gagging and vomiting whenever I tried to increase the volume of canned formula at a feeding. So I began reading about nutrition, and experimenting more. Little by little, I tried more food, and less canned formula when I had replaced the protein, etc.

Now, Caressa has been on complete blended formula diet for about four months. She receives all her nutrition from my cooking, and I give her supplements, vitamins, cod liver oil, etc. Here is the most amazing thing. She can consume with no problem at all, 50% more than she ever was able to before. In other words, instead of her maximum tolerance of 16 ounces at a feeding, she takes 24 ounces. On top of that, she is off all of her stomach medicines! I eased her off the medicines before I started trying to increase her volume. I was ready to reverse all my efforts at the least sign of trouble. There never was any. I am truly astounded.

I have not dared mention this to her doctor yet, because I can't run the risk of having her insurance stop paying for her enteral supplies. I'm still kind of expecting her to start gagging again, and I'll have to back off, and start her stomach medicines again. However, there is a chance she will continue to digest mom's cooking, and that is very exciting. Her stomach really knows the difference. I tried feeding her formula two days ago. Before the first can was in, her old screwed up face that means nausea appeared. Before the end of the second can, she began gagging, and vomited. This was the story of her life, before. I tried it, to see if it would still happen. It was warm, and given at the same rate. Her body did not want it. It truly does make her feel sick! I feel so sorry for her! Oh, I hope she continues to digest my food. She does not look nauseated while I'm feeding her real food. She does not gag, or vomit. I'm stunned by this.

I use lots of spices, so her food will smell nice. In her hot cereal, I put lots of pumpkin pie spices, (nutmeg, cloves, cinnamon), in her peas, mint, and etc. I've never used so many spices before, in cooking for my other children. I read that it is possible that a person can taste what is fed them by tube. I never dreamed this! Caressa has lived decades on vanilla. No wonder her body is sick of it! I offered for her to smell the cup of food, but she does not sniff food, because she grabs, and wants to play in it before I could get it to her nose. She can't stand anyone to put food close to her face.

I located a net group of parents who are doing this too, and joined it. There are nearly 350 parents on this group! It is absolutely fascinating to discover that I am not the only one. I am doing this with my son Joey also. One interesting thing to note is that on the exact same diet, Caressa has gained weight, and Joey has lost some. Joey is also off his stomach medicines, tolerating a larger volume, and not gagging and having reflux any more! I am giving Joey higher calorie additions to his diet, and watching him closely. He uses up an enormous amount of calories for someone who barely moves!

This is a very exciting thing to have discovered.

I'll be back with more news later!

(C) 2008 Rosemary J. Gwaltney