The title to this post says it all. Caleigh will have her first day of school tomorrow. Our ARD meeting went well and didn't even last an hour. We all agreed on a healthcare management plan and all of Caleigh's doctors are on board. I have to say that I am loving the school nurse and she is the reason I feel comfort in sending Caleigh at this point.
We are still having issues with Caleigh's bacterial overgrowth. Three days off of the Flagyl and things started to fall apart again with 12 stools in 24 hours. So we started the Xifaxin back up. We will continue that for 14 days. So far it seems to have slowed things down and Caleigh's pain level is lower. Just in time to start school.
For the past week we have been counting down the days with Caleigh. At any given time she can tell you exactly how many days it is until school starts. Depending on the day and her mood, when we ask her if she is excited, we will get a "yes" or a "I'm not sure." We tried boosting the excitement by doing something school related everyday. One day we went and bought an outfit. Another day we did school supplies. It's been a busy week preparing for the big day.
Caleigh and I also worked on a flip book portfolio to hang on her wheelchair. The first prototype for now. I've always heard about the student portfolio that you are supposed to pass around to all of the adults involved with your child. That folder holds your vision for your child, IEP copies and any reports that are important. It can also hold anything personal you want others to know about your child. That is all fine and good, but who is really going to dig around in your child's backpack looking for the portfolio that might be there in a passer by situation? I decided to do the flip chart version with more personal aspects of Caleigh's life.
I included things like her iPad, eating restrictions, vision tips, important phone numbers, glasses, AFOs, Likes & Dislikes, G-button info and on and on. The good thing about this little chart is that it is easy to change things out. When Caleigh's favorite color changes, I can just change the card. Easy Peasy. When another child or adult comes up to Caleigh they can easily start a conversation just by the info in the chart. This is my hope at least.
I've been asked by the school nurse to stay with Caleigh in class for the full three hours on the first day. This is so that she can get our language patterns with Caleigh down and understand exactly what it is we do. Academically, I've seen the units of study for the next 4 weeks and honestly Caleigh knows it all. The trick will be having her show them that she knows it all. In due time, I'm sure. Socially, I can't wait to see which way Caleigh goes.
It's a very exciting and scary day all at once. I've been wishing I had a crystal ball the whole week!