Wow - so much has happened in the last 24 hours! We had our meeting at the technology center on Monday and it was great. Bug was really tired that day, but she went and tried everything out like a trooper. We just took several rest breaks inbetween different technology trials. I'm going to have a separate post about that later, when I have my notes and can write names in case anyone else needs the information, but it was a great experience and Jim was a great help!
We also had our new ring splints made - all ten of them. It took about 90 minutes, and Bug was great for that as well. Everything fit wonderfully during that time, but after we left and got outside and walking around one by one her fingers started to swell and the rings came off. :( Since then we have been unable to get them back on, and the couple that will go on get stuck and make a suction sound when we pull them off. I am crossing my fingers that we can try lowering the temperature tonight while she sleeps and get her fingers down to where the splints will at least go on tomorrow. We'll see. If not, back to the OT we will have to go, although I don't know what to do to get them to swell while he's making them.
Yesterday was our IEP meeting. We left the IEP as it stood from last December, but brainstormed a lot to get data for the upcoming meeting. It was almost 3.5 hours we all talked. We had our 1st grade teacher, 2nd grade teacher, principle, OT, PT, gym teacher, gym student teacher, and school nurse. Things that are worth mentioning are that we are going to try allowing bug to go to lunch early with a different student (drawn from a hat) each day to allow her more time to eat, she will also be allowed to go to the library or computer lab as available (has to have an adult present) during resting recesses to read or practice typing, she is going to be given round stickers with numbers on them to put on her math worksheets so she won't have to write them until our technology is in place, the school is looking into getting some benches outside at the playground (we have none) so she can rest outside and be social with the other kids even if she is tired. Until then, chairs will be brought out as an option. She also will have an aid for state testing to fill in the bubbles on the test, and for multiple choice in the classroom she can use a marker to put a dot on the correct answers. Her bean bag chair is back in the classroom with a lapboard for if she needs to be in a different position while working. A camping pad is in the nurses office to go on the cot as a trial for when she needs quiet rest, in hopes of keeping her in school. I also was allowed to leave a pillow for her to use with it. Technology was discussed, but again, that will be in another post. :)
We also are going to be able to paint the special chair they got her, to dress it up. I'll take before and after pictures when the chair is finished being worked on. It's interesting!
And finally, the request for an air-conditioner went fine, we just have to wait for our medical note to get here. (hope it's soon!) :)
The first day of school was fun, and so far Bug hasn't crashed. I suspect tonight will be early bedtime though. She did work hard, and not being able to use any ring splints means extra work for her. But she was *very* happy, loves her teacher, and enjoys most of the kids in her class.
All in all, it's been a good couple of days!
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!
I can't believe that "bug" will be 7 in a few short hours! My how time has flown!!!
We are celebrating with family (grandma and papa are here) on her birthday, and then will have a party with her friends when school starts. Believe it or not, that is less than two weeks away as well. My do I have a lot to plan, research, and prepare for before then! Our IEP meeting is on the 22nd, and I have *tons* of notes to put together with ideas, thoughts, and suggestions before then. We also have an appointment with the OT who makes her ring splints on the 21st, to get an entire new set. Her hands have grown that much that every finger needs a new one. Wow!
More later, but for now, a weather report as we have hot feet. (treated with children's advil tonight, cold packs would not work)
|Wind:||From S at 7 mph|
Temp: 82 (feels like 91)