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Sunday, May 10, 2009

Back home from Salt Lake City and Dr. Swoboda

What a trip. The babies were dreams on the flights. Our GPS actually got us to where we needed to go, and we were on time for everything! The babies slept at night, mostly, though they didn’t nap hardly at all (oh joy). The weather was gorgeous—chilly chilly chilly! I cursed myself for not bringing long-sleeves to wear—I guess being the desert rat that I am, I forgot that even though it was 102 degrees the day we left Phoenix that it might be colder at our destination. There was snow on the tops of all the mountains, and everything else was green. It looked like a different country altogether. We half-expected Julie Andrews to come prancing over the hill in a long dress followed by a gaggle of singing children. And Salt Lake City itself is perfectly charming. It reminded me of Alexandria, Virginia—the streets lined with red brick homes and large trees, plenty of pedestrian walkways, many local shops and restaurants. The place was adorable. Not to mention that it’s the home of Rodizio Grill, a place we highly recommend to all non-vegetarians who like to eat a lot of food.

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:

And our friends the Ervin family were a huge help. They rounded up two strap-on high chairs and two Bumbo seats for us to use during our stay. Since the babies don’t sit up on their own, it would have been very challenging to feed them or leave them to play independently without the highchairs and Bumbos. It was so, so nice of them to round up those seats for us (they had to ask around to everyone they knew in order to come up with it all), plus they brought us a home-cooked meal. It was almost dinnertime on our first day there and we were dreading the idea of taking travel-weary babies out in public to eat, but we didn’t have to, thanks to Julie and Michelle. We had a delicious three course meal in the convenience of our little condo.

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 and her staff put the babies through the ringer—in a good way. They were sedated and had EMG’s done on their hands, to measure nerve/muscle reaction ability (or something like that). They had extensive labs performed in order to examine their dietary deficiencies. And we’ll find out about how many SMN backup copies they each have when the results come back in a couple of weeks. They had their weight and all kinds of measurements taken, to sort of act like a baseline against which we will measure future progress and physical development. They met with a physical therapist, who had some suggestions on areas to emphasize with our own PT back home. And Chris and I both gave our own blood samples to the cause, so that it could be fully analyzed and the results stored in some big database where they house information like that on SMA families.

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!


  1. Wow, it looks really pretty there! And nice that you guys actually had to wear jackets. Glad your appointment went well and you were able to see this specialist. It's too bad they don't have something like that here in AZ...