Sunday, January 27, 2008

An Author or a Writer?

One of my favorite books is “Kitchen Table Wisdom, Stories that Heal” by Rachel Naomi Remen, M.D. It's one of those books you can pick up and read a chapter or two at a time, in no particular order, and over and over again. As you have probably figured out by now, I'm not one to read novels or fiction -- I like the real stuff .... information I can apply to my own life. You'd think I'd like escape every once in awhile into a world of make believe. But, I'm too much of a realist. In the preface of her book, Dr. Remen describes how, when setting out to write the book, she quickly discovered that she is an author and not a writer. She says writers are people who are born to write and an author is someone who was born to do something else and then writes a book about it. I'd love to write a book (or two) some day. Although, I'm not sure which category I fall into. But for my experiences with Jack, I doubt I'd have much to write about. So, I guess that makes me an author? Regardless, maybe ... someday ... I'll write that book.

We had a rainy and relaxing weekend. A friend of mine and I took Eric to the Arizona Science Center - a place I had never been to before. It was nice to be able to spend some time with just Eric, as that doesn't happen too often. He will tell you that he had a great time up until the end. When we went to the gift shop for the all important souvenir -- it was closed. He was deflated. It's so tough being a kid.

Action shot!

Kristi worked today and, unlike most Sundays, I didn't go into the office. Kristi had Jack up in his wheelchair playing with his computer. I grabbed my camera and shot a short video clip so you can see how Jack uses his switches in conjunction with his computer.

I haven't heard anything regarding the status of our appeal with UHC. I'm going to follow up with the attorney tomorrow. If I had done the appeal myself, I would have requested an expedited appeal. I'm not sure the attorney is going that route because he wants to get information from UHC. I also need to follow up with our Department of Developmental Disabilities as they should have approved the eye gaze system by now. I'm losing patience all the way around with this whole thing!

I was able to get Jack scheduled with his neurologist in October and she is also going to schedule a sleep study for Jack (since our pulmonolgist is no longer at SLCH). Jack's tune-up (as I like to call it) will involve appointments with 4 doctors, an overnight sleep study, a brochoscopy and likely a EUA (examination under anesthesia) with the ophthalmologist (done the same time as the broch). That is, if I actually decide to make the trip to STL.

That's the news from here. I hope you all have a productive and peaceful week. Enjoy the moment.


Anonymous said...

Hi Ann, I was talking with my sister about your funding delays ans she suggedted you try a local AMBUCS chapter. Apparantly their main goal is to get the right hardware/sodftware to the person with the disability as soon as possible, it couldnt hurt. G'luck, Deb

julie w said...

Great to see Jack playing on his computer - he's doing really great. And, Eric looked like he was having an awesome time. Sounds like a good weekend all round.
Hope you get the eye gaze system as soon as possible - and good luck with the 'tune up'!