Our place of residence during our trip was a gorgeous cabin-slash-condo in Park City. It could not have been more convenient—just 30 minutes from the airport and the hospital, a parking space right in front of the door, three levels with plenty of bedrooms for us, gorgeous kitchen, luxurious bedrooms, gorgeous views, and a golf course in the backyard. Many thanks to Julie Hudson and her family for making it available to us. It was ideal for our needs. And I can’t help but post the link to the property, should anyone else be looking for a rental in Park City: http://www.vrbo.com/187246
Between the freeway and the condo, in Park City, sits the Utah Olympic Park. That name sounds a little dull to me, because wow, what a place. It was extremely cool to see the vast expanse of mountain and the ski jumps and the bobsled track and so much other stuff that I couldn’t check it all out (hello, cold and windy up on that mountain). It was cool to imagine all the people and TV crews and athletes swarming that deserted mountainside. We spent a lot of time discussing where the athletes stayed, where the “Olympic village” was during those 2002 Olympics. Park City is a little small to house that many people. Does anyone else know where they all stayed? Anyway, I’ve never been anywhere related to the Olympics, and I was impressed. Chris was, too. The babies, alas, were less than thrilled with the scene—though that may have been more related to them being tired, hungry, and cold up there.
Dr. Swoboda agreed to start the twins on the drug combo vaproic acid and carnitine. One side effect of those drugs is that it can cause increase in appetite and weight gain—which actually is a move in the right direction for the twins. They charted below the 5th percentile on the growth charts, so we look forward to these drugs improving their size, as well as help their overall strength and abilities. Our fingers are crossed.
Basically, the benefit of meeting with the doctor and her staff was for them to evaluate the twins current status and health, and to provide us with sort of a manual for their care, based on the staff’s extensive experience with SMA patients. We took oodles of notes, but look forward to seeing the information that Dr. Swoboda’s office sends to our doctors here, too. The information we obtained regarding their daily and long-term care is really like gold to us. But it’s overwhelming. It’s been two days and we’re still trying to process everything.
So now we’re back home. It’s over a hundred degrees F today. Boy, we miss Utah in a big way! I’m glad we went, but I’m also glad it’s over. It was so much work, I need a vacation now! Thankfully, it’s Mother’s Day, so maybe I’ll get an hour or two to myself to finish rereading Harry Potter and the Half Blood Prince. Happy Mother’s Day to my mom, and all my mom friends!