So, first off, sorry for the extended break, i can see how it is tough to keep up with the whole blogging thing... We took Jake to Cincinnatti Childrens Hospital today, which is well known for its neurology clinic. It begs the question though, why go to Cincinnatti when you have a perfectly good childrens hospital in Denver? Well, although Denver Childrens is good, Cincinatti has created a model of excellence in care for MD that I would love to see in Denver.
The trip there was a bit of a pain, after spending 2 hours on the runway in Denver, waiting to de-ice the plane through yet another one of our famous snowstorms this winter, i have to say Jake was a trooper. When we got to the hospital, we first met with a Physical Therapist specialist, who evaluated Jake, and gave us some exercises and stretches to do. All in all, i think Jake tested well in his evaluation. We then saw Dr.Brenda Wong, who is far and away the most knowledgable and helpful doctor we have seen yet with regards to MD. She has seen countless patients over the years, and her perspective on all the things going on in research, and in clinical trials will be great help for us. Bottom line is that seeing her makes the schlep to Cincinnatti worthwhile. After some comprehensive testing and videotaping Jake's walking, running, and jumping, we now should have a good baseline to evaluate him on a go forward basis. We plan on starting him on the steroids in a couple of weeks.
Next, we saw a nutritionist who told us about the changes we will need to make in our home lifestyle once Jake starts the steroids. Appetite increases about 3 times, and based on the way Jake eats now, i cant imagine what he will be like then. Because of that, we are going to need to change what he eats, and control his diet to healthy foods, to minimize his weight gain. The best way to do this, is to implement this policy throughout the whole house, so unfortunately for Lexi, that means that a lot of the junk that they enjoy is going to have to be curtailed. In addition, their frequent trips to McDonalds are going to have to become fewer and far between.
Finally we went to the cardiologist, who will also continue to evaluate Jake, and although there doesnt seem to be much concern now, there will be later on. After a quick blood draw, which Jake took like a trooper, we were off to the airport, and the trip was done.
In the future, we will be going back there either once or twice a year, all in all, it is worth the pain of the travel. Perhaps future trips will be made easier if we get one of these... something to consider :)
Hey Brian, are there any news already??
mimi
Posted by: mimi | January 23, 2007 at 10:26 AM
I would love to hear about your experience! Glad to hear Jake is getting the best care possible!
Ang :)
Posted by: Angela | January 24, 2007 at 09:11 AM