Wow - Thanks Guys!

Thanks for those of you who have been reading and commenting, it really means a lot to me! Sometimes I feel like the online community are the only ones who understand. I know that's not true, but the EDS community seems so much bigger online. It's so much easier to find others who have been there, done that. So, thank you for helping me feel not so alone!

Not to many big updates here. Bug and I have been practicing her relaxation exercises, and she's done really well with them. She doesn't enjoy them, but said she has been doing some at school "to herself". I figure that means that they must be helping her some, or at least I hope so! We've had her brother practicing with us, since it's a technique that we could all use, and to also keep Bug from always feeling like she is being singled out. We attended our second therapy session and it also went well. In fact, Bug said at the end of the session she was excited to return in two weeks. Yippee! They worked on identifying emotions on faces, talking about what made you feel those different emotions (they are working up to getting her to talk about the Dr's) and they introduced breathing exercises to our relaxation arsenal. It was neat to see her walking up and down the halls blowing bubbles and then chewing gum and blowing gum bubbles. It was really apparent she was working hard on the breathing and exhaling while engaging in other activities. Amazing the things they have thought of to work with kids - she was having fun while learning to breath properly during other activities. It really reinforced the decision to make the drive to see someone who deals with children and Dr. phobias.

Nothing new is happening at school. We finished our first quarter and Bug got pretty much exceeding standards on everything. She is still doing a great job at making it through the day, so hopefully things have improved for her and our winter will be better too!

One thing that I just can't figure out is why her rings are still not fitting. Not the new ones from August, or the ones from a couple of weeks ago. Out of all 20 that were made, only 4 are fitting. Still, even with the weather cooling down some. All fit at the time they were made, and several hours after. The only thing I can figure is that her joints are actually swollen, not just her fingers. I'm not giving up on these recent splints yet (we've just been wearing less splints) - I'm going to wait and see what happens when it gets a bit colder. If they still don't fit, I'll call and see the hospital OT again. At this rate, I'm tempted to see about having the silver ones done, as everyone says you can adjust the sizing about 1/2 size up to accommodate swelling. Our rings have cost thousands of dollars this fall already ( I think $3000 between both fittings) so I can't imagine the silver ones being that off. Maybe we should start with one or two silver ones and see if that works and go from there... I'm thinking out loud. :)

Bug continues her swimming lessons weekly now, and also vocals. She is enjoying both, and we seem to have them spaced out enough that they are not tiring her out. She seems really happy and for that I am thankful.

Thanks again for your support and feedback!


Girl, Dislocated said...

I'm glad Bug is happy and doing well in school, and that she's making progress with relaxation!

I feel like there's more EDS support online too, probably because I've yet to meet anyone in person who has EDS.

Good luck with the ring splints!