I just wanted to take a minute and thank all of you who continue to post ideas, suggestion, and feedback in this blog. There have been so many good ideas that have come along, and I really do read and try a lot. Someone just posted a comment to an old post about Bugs mouth rash and how maybe it's from the container that she was drinking out of. What a great suggestion! That was too far back to remember what cup she was using, but I sure am going to pay attention from now on.
I also got tips about seating at school from comments in this blog. I used those to help convince our school to get Bug a better chair, and they did. This year she's had far less problems, and while I can't say it's 100% the chair, I do believe that has a lot to do with it. Extra arm, leg, and back support has to be helping.
Another thing that never fails to brighten my day are the comments from other "kids" with EDS. Granted, most of you are tweens or teens, or young adults, but to me you're still kids. LOL Anyway, it motivates me to keep trying and encourages me that I am doing the right things when I hear from you. It is also inspiring that so many of you are taking charge of your own health and well-being at ages that are far younger than the average person would. Kudos to you!
I've also had comments left from teachers and people working with EDS'ers. It's great to know that people are taking the time to try to understand what life can be like for an EDS kid. I wish there were more of you. If you ever have a question about something specific just let me know and I'll try my best to answer or give ideas. I am always behind in this blog, but if I see someone who needs help I'll try my best to get to it.
Finally, there was a PT student who wrote. Here I am guilty of not answering yet. I suppose part of the problem is that there isn't a specific exercise that Bug has taken to. We did a series of them that our PT gave us, but really it boils down to her loving the stuff that felt like play. She loves her mini-tramp and plays/jumps on it a lot. I made sure to get her one with a support bar to use as needed. She also loves the Bosu ball and jumping on and off of this. I also have found her sitting on it often which inspired me to research Balance Ball Chairs. I think I'm going to order a couple for our basement. If it feels that good to sit on a bosu ball I bet these chairs will be a hit too. I think I've mentioned before that she was playing the Wii while standing on the Bosu ball, but I can't remember. Anyway, while that looks like all fun and games I can tell you it isn't. Standing still on the Bosu ball is hard already, but doing that and playing Wii Bowling or Tennis is very challenging! LOL
She also loved the medicine balls that bounce. The thing she disliked most was the therapy band. Since then I've read that they aren't always the best thing to use with EDS patients. Some people can though, so ymmv.
Finally, there are so many parents and random people who post here and each and every one of you keeps me going. Thank you all!!!!
Thursday, March 27, 2008
what bug likes