We had Jenelle's "IEP" (Individualized Education Plan) meeting yesterday with the Tustin Unified School District. The meeting went a little over 3 hours, and there were 15 people in attendance, 8 from the District, and 5 who were in attendance at our invitation (Jenelle's PT, OT, Pre-school Teacher, our Regional Center case worker and our Advocate from the Epilepsy Alliance.) On Thursday I had the opportunity to read Jenelle's Assessment results and tour some different school programs. It was tough, and took me a little over an hour to read the results. A friend commented that, "knowing something in your heart and seeing it in writing are two different things." and that couldn't be more accurate. Overall, Jenelle is more than 75 - 80% delayed in all areas with scattered skills. Most of the IEP was discussing these results and potential goals for Jenelle for the coming year.
Although Brett and I have not signed anything officially, we pretty much have come to an agreement with the District that the best placement for Jenelle is a program at Heideman Elementary in Tustin that is provided by the County of Orange Department of Education. The program is 5 days a week from 9 to 3, with transportation included. This program has all sorts of equipment that can benefit Jenelle including standers, position seats, visual equipment, etc. They also have a full time nurse who is well trained in using Diastat and feeding through the G-Tube. The District wants to add speech therapy and continue Jenelle's physical therapy with her current therapist. There are a couple of things to "fine tune", but other than that we have a good idea of how things will change for Jenelle come October 24. It sounds like Jenelle will be getting lots of intense therapy to work on things like sitting up and using her hands. We will be sad to lose her therapist at Blind Children's, but this will be a great change for Jenelle.
In other news, Jenelle got her bath seat on Monday and has been enjoying her bath now that she can sit safely in the tub. We did not have to travel to UCLA on Thursday like anticipated. She continues to remain seizure free since last Thursday, and Dr. Shields does not want to see her as long as she remains stable. I also got the call late Friday that Jenelle's new AFOs are in, and we'll be picking them up on Tuesday.
Thanks for the continued prayers. I'll keep you posted!