It's always something...

List of updates since my last post....

First off, tomorrow night is the long awaited (not really, but it feels that way!) airing of Ehlers-Danlos Syndrome on Primetime's Medical Mysteries show. Woo-hoo! I can't wait - let's just hope that they show what most of us look like, not just the extreme cases. Check for air time in your area, most of us will have it either at 9 or 10. Don't worry, you can still see American Idol and learn about EDS - all in one night! Can't beat that, can you!?

Next up - last Thursday brought more tummy problems. Another early day out of school. Ugh. However, after posting to one of my online support groups, I came away with some wonderful ideas on things that could be contributing to the problem. Everything from fatigue, to her chair, bloating that makes her clothes rub, lighting, and more. I'll try to compile the suggestions here at a later date in case they are helpful to others.

Friday brought the OT - and my daughters first lesson in tying shoes with ring splints. How exciting! The OT also spoke with her teacher about getting her rolling with an ibook to try. They selected the ibook as the first piece of technology because the keys are the easiest to push. Great thinking! :) The only drawback is that no one believes she can type, (ok, her teacher does, but no one else) so no one wants to put time into teaching it to her. So, even if she takes to the ibook, it won't do her too much good because there will still be an expression barrier.

So, I have a new goal, to teach her to type. I'm going to prove everyone wrong. There is no reason that she can't be taught to type, kids her age can play the piano and it's the same type of thing. (no pun intended - hehe). I am determined to show the world that she has at least one strength for each of her weaknesses, and that we need to spend more time looking for and encouraging them. Just like blind children learn to read with braille, I'm sure my daughter will embrace a way to do her work and express herself as long as a reasonable way is shown to her and encouraged. She loves to learn, loves school, and is bright as the rest of them.

Other highlights...

Trip to the hospital OT on Friday to get new ring splints made.

And equally important - I found another pair of pants that look "normal/stylish" that are without zippers or buttons! This time they are from Old Navy, and are part of the spring collection. Lots of different colors to choose from too. The verdict is still out as to how easy they will be to get on and off after washing, but provided they don't shrink too much I think we'll be in good shape.



Ioma (a fellow EDSer) said...

Your daughter CAN and WILL learn to type, I know she can!

I was 5 when I learned to type on a computer (back then it was just DOS, and I learned a little programming as I was learning my ABCs and 123s).

My 6-1/2 y/o brother is learning to type, and I'll ask Mom how he's being taught. :)

I had, and still have, tummy troubles - I have to eat in a reclined position and stay reclined or lying down for at least an hour, then roll over on my side gradually, or everything'll come back up. I haven't found a real solution yet, and I'm now 23, but my advice would be:

Try having her eat in a reclined position.
Make sure she eats slowly - don't rush!
Eliminate as many sensory stimuli as you can during and just after she eats.
Try having her eat soft foods, and foods that are "packed-down" or don't have a lot of air in them (like popcorn has a lot of air in it, but pudding doesn't). This might help cut down on The Dreaded Vurps (vurp=vomit burp).

BugsMom said...

Thank you so much for your suggestions and hope! :) It means a lot to me to hear what others have accomplished, and their suggestions and experiences on what is happening with my daughter. THANKS!!!