I'll admit it, I've had some avoidance issues. :) I've known all summer I needed to get a lot of research and ideas down on paper to plan for second grade, but I've just put it off. It was so nice to be kind of "normal" for a bit and not having the pressure to have to seek answers right then and there. Now that school starts in less than a week, and our IEP meeting is even sooner than that, I've been hard at work getting my thoughts in order and picking lots of brains for new ideas and suggestions.
First of all, I just don't think I would be where I'm at in this process without the ideas and support of the various Ehlers-Danlos e-mail support groups I'm on. Reading about everyone on the lists and having other adults with EDS to bounce ideas off of has been a HUGE help! I've also relied heavily on our Parent Training Center called Ask Resource, as well as Iowa COMPASS. Today I learned about another technology group that has offered for Bug to come and try different assistive technology out in their office on Monday. I am beside myself with excitement - it's like a kid in a candy store! :) He has voice activated programs, touch screen, mouse driven programs, and lots more. So many things to test!
We also will be getting 10 new ring splints that day. Fun fun!
Today I also spoke with our AEA's OT, and kind of got a basic meeting agenda together. On the list are to discuss options for PE inclusion, creating a good comfortable and quiet place to rest, assistive technology options/implementation, seating and desk size/organization, getting a basic speech evaluation (and see if we need a more comprehensive one), medical update, plan for missing school due to pain, and I also let her know we requested a medical note for an air conditioner for her classroom. The heat is bad for her fatigue, as well as it causes her fingers to swell to the point where her ring splints don't fit. It was a good conversation and I am looking forward to our meeting on Tuesday!
On another note - our GERD has not gone away. We are still having frequent stomach aches, feeling of fullness, throw-up burps. Our GI called our Prevacid script back in and scheduled an Endoscopy for in a couple of weeks. I'm afraid, but I know that it's best we get in and actually look at what is going on. It will allow us to treat her better in the long run. But still, it was hard to make that appointment.
That's about it for now! If anything earth shattering happens before our meeting I'll post it, otherwise, 'till then!