|March 19, 2002|
|April 22, 2002|
|May 15, 2002 (Tolerex)|
|May 15, 2002 (Physical)|
September 10, 2001
Just to share my joy for today!
Crystal has been off meat and dairy for about a month now. She began her new amino acid (not Tolerex, a formula I found locally) supplement 2 1/2 weeks ago. After a week of noticing no changes I began a new dosage for her and she has been doing that for about 5 days now. I hadn't really noticed too much til today!!!
Crystal was just full of life all day today. She shared a wonderful tricky attitude and just would be very mischievous. She got excited over everything we went to do together. And she even made a few efforts beyond her norm. She stayed busy all day today with or without me exploring new ways to play and move her body. She really played for a long time with her legs just moving them to the side of her and then to the front of her and then to the side again and several times I noticed her even crossing them and lifting her knee with her feet planted in front of her. Now keep in mind, she uses her arms to assist her legs quite frequently to move and get into various positions.
Every move Crystal made today was just so fast and spunky. Her endurance seemed to last longer as well. She played with her racetrack for an hour today where she has to put the car on the track reaching above her head and then it cruises to the bottom and she does it all over again.
Then she just totally made my night at the end during bath time!!!
For the first time when I laid her down to rinse the soap out of her hair she just out of nowhere started giggling and moving her entire body quickly. The water level was just below her temple. As her left shoulder and arm moved so did her right leg. And vice versa. Her head constantly going from right to left. If she had the skills and had of been in the pool she would have been swimming backwards. You should have seen the force she was putting behind her moves. And the big splashes that even got me wet.
Even several times today when I would be handling her I really had to fight her to her to get her to stay still. She would keep sliding off my lap or scooting down in her seat. And it wasn't her usual slow gradual slide. I really had a hard time several times accomplishing my task with her cause I had to keep repositioning her.
Okay! I'm not excited. Well anyway I am still going to be realistic and wait to see some more consistency. But some things I have noted consistently since I began processing this diet are:
1.) She don't have as many bad days. Before, every 3rd or 4th day, she would just be floppier than usual and unable to accomplish her normal activities.
2.) She has now gone 8 days without her Myrolax (script to help her bowels move).
3.) Her limb movements have been faster. Like when she swings her legs. Or shake her head.
4.) When I carry her in my arms I always let her sit on my arm and then I have my other arm on standby to catch her and I have also learned how to keep my balance in coordination with hers to assure that I don't overwhelm her with my movement: Well now I am noticing that she is falling to my shoulder less, and I am able to walk faster without it making her fall, and I can bounce down steps a little harder, and I can take turns a little faster.
5.) She had one day of skinny hands and feet, but overall the swelling is down from its norm.
6.) In her wheelchair she is able to cruise about 3-4 feet before she gets her hands down for another push, her tires just spinning freely.
Well that's all I can't think of for now. Thanks to all of you for your assistance and guidance. I am really excited to see the benefits of Tolerex once I get that ordered. It has been approved through Medicaid and my doctor is working on a script for it now.
Thanks again for all of your encouragement as well.
9/8/01 from Brenda Hanson
Hi everyone: MJ has been on Tolerex for 3 days now and we have already noticed a huge difference. It is truly amazing! MJ hasn't eaten any meat since last weekend. She is still eating small amounts of protein (cheese, chicken flavoring, margarine) but very little. She has lost almost 2 pounds, which for her is great. She has more energy and concentration. We haven't noticed any increase in strength but have noticed less swelling in her legs, less flushing episodes and less secretions and having to clear her throat. That is wonderful. We mix the Tolerex with a glass of Kool-Aid. The directions say mix with 8.5 oz. but we double the amount, which makes it less concentrated but tastes better. MJ is keeping track and will be doing this as her science fair project. We can't wait to see what other results await! Hope everyone is having a good weekend.