Glycogen Storage Disease – StarchWars

Florida Trip

Posted on 04. Apr, 2008 by Jillian in Glycogen Storage Disease

I’ve been a blog slacker since we started preparing for our trip to Dr. Weinstein, but things are starting to get back to normal now, so there goes my excuse.

One of my favorite parts about being in the Clinical Research area of Shand’s Hospital is, obviously Dr. Weinstein. Next in line would have to be the staff- they are all so wonderful. As soon as we arrived Laurie Fiske (Glycogen Storage Disease Program Coordinator) brought ALL of the boys amazing toys. The toys kept them busy not only during our hospital stay, but also for the 12 hour day we spent in airports coming home.

We were excited to see all of the same nurses again, I am awed by how good they are. We still have “Paula Panda” and “Betsy Bear”- stuffed animals from our first visit to Dr. Weinstein that were named in honor of two of our favorite nurses. They’re all just wonderful people with not only incredible experience, but compassionate hearts. It is the only hospital where I can let my guard down and actually trust that the nurses will be right on time for cornstarch- everytime. I actually slept better while the boys and I were in the hospital, than I do at home.

Aside from the amazing people that we have grown to love from our last few visits, we have to praise the toy room. Not only does it have board games, books and miscellaneous toys, but as many movies as our local blockbuster- although not quite as numerous as my mother-in-law’s collection. They also have an old school Nintendo that I’m sure the nostalgic parents appreciate just as much as the kids. The fussball table is always a big hit- especially tournaments with Dr. Weinstein. (Our 2 year old Jonny won this year). They even have a computer as well as a washing machine and dryer.

Every year we go back things get better and better. This year’s exciting new development is… drumroll please… a Nintendo Wii!!!! The boys (my husband included) got a huge kick out of it. While all of the games were fun, the best one is called Big Brain Academy.

I’ll have to blog more about that later….