Welcome to Jeremy world.....

There was a song, can't remember who even sings the song, or the whole song not that I even care. I will on occasion when the mood hits do some radio surfing and occasionally land on the oldies, "What's going on in your world, it sure is lonesome in mine", that is just a small part of the song but I just want to say that is not the case in my world because I have a front row seat and live in Jeremy world....

We have this awesome thing with OU (Oklahoma University) and the request normally comes through the Oklahoma Family Network so me being the regional coordinator I try to help them find complex children, like Jeremy. The PT/OT students get assigned a child and they have to research that child, look at what resources are already in place, visit the child's home, visit a place the student goes, come up with a plan for the child and give a presentation. This is a requirement and it's awesome family centered practice. They are also going to get a front row seat into Jeremy world. It helps them to see what families who have children with special needs deal with daily. We always get a really good group and I'm excited to meet this year's group. They always want to learn about Jeremy, Jeremy the person and Jeremy the boy who has FG syndrome. It's always interesting since there is not much info on FG what they come up with. They always come up with interesting information and ideas.

I get an email from one of ours today, and we meet with them on Wednesday. I was explaining the recent surgery J had done to release the kyhposis and we had some setbacks so the spinal fusion would be done in the near future. Jeremy seems to be even complex than in future years. This is good, because they get to see how my world was recently rocked, how it's going to be continued to be rocked. They may not all become Pediatric PT or OT but the whole emphasis is to hope that they learn something that will impact the way they do future practice. It's all about family centered care.

I keep saying that I am going to write a book one day about living with Jeremy. Jeremy didn't come with a textbook and Jeremy has always wrote his own book, sentence by sentence, page by page, chapter by chapter. Welcome to Jeremy world, that is going to be the title of my book.