This years vacation was different than most years. This year we made arrangements for Christian to stay with Todd for the week, Katie to stay with her cousins and Colin to stay at Grandma and Grandpa's house while Mommy, Daddy and Cameron headed out to Phoenix. Every other year the Joubert Syndrom Foundation holds a conference for all the families to meet other affected families and meet with the leading research doctors and specialists in the world, as well as participate in various research studies on Joubert Syndrome. This years conference was in Phoenix and since airfare is a bit too pricey for a family of 6, we opted to only take Cameron this year. It was an amazing opportunity to spend some quality time with just Cameron, as well and giving Dan and I an amazing parenting break and a chance to fully enjoy a vacation together.
I was pretty nervous about how Cameron would do on his first airplane flight... and my first time taking a kid on an airplane... and dealing with the stricter TSA requirements. But I was trilled to find that Cameron did great through the whole process. It was a super early morning for a super early flight, but Cameron didn't complain a bit. He watched downloaded TV shows on his tablet for most of the flight. Then fell asleep for about an hour till we landed.
We got out to Phoenix a day and a half before the conference started, so we rented a car for a day and tried to squeeze in as much sight seeing as we could into one day. The First thing we did was go out for Breakfast at Matt's Big Breakfast, a place that Dan found on line. It did not disappoint! Then we got checked into the Conference resort, checked out the place, then headed for Old Town Scottsdale for some souvenir shopping for the other kids. While there we decided to treat Cameron to Ice Cream for lunch. After that we roasting and exhausted, so we headed back to the resort for some down time in the pool! The pool water was like bath water, it was amazing and perfectly relaxing! We spent a ton of time in the pool while we were there! Before returning the car that evening we went to In and Our Burger, then drove out a bit into the Desert to take some pictures for the kids. Katie specifically requested pictures of Cactus. After that Dan dropped Cameron and I back at the resort, then returned the car to the airport and took an Uber back to the resort.
The next day we spent the morning in the pool, and I finally worked up the nerve to talk to another JS mom in the pool. Her JS son was 10 (Same age as Christian) and she has a "typical" daughter slightly younger than Katie. We made plans to meet up for lunch at the hotel restaurant and ended up spending almost all other free time together. That afternoon officaly started the JS Conference and we had the option of attending various seminars and small group discussions about every aspect of life with Joubert Syndrome. A lot of stuff was not new information for us, but some of it was new and very educational. We got an Orthodontia evaluation for Cameron... it wasn't great news. We learned about financially planning ahead for a dependent adult child, various types of therapy, liver and kidney function.... and lots of info about the current research developments, stem cell therapy and discovering/diagnosing of new JS genes. As of now Cameron is still considered undiagnosed at the genetic level. Though there is a chance that his gene has been diagnosed, but not yet published.
Each evening of the conference there was a special event held. The first evening was a Pineapple Pool Party, then Dad's Night out and finally Mom's Night Out. During Dad's night out Cameron and I had a little Mommy/Son date night. We headed downstairs to the restaurant and split a desert.. During the conference all of our meals were provided, but they never had desert and apparently my sweet tooth has stronger urges than I realized. By the time Dad's night out rolled around I had some serious sugar cravings! Desert was just what was needed!
As part of the conference we were able to enroll Cameron into various research studies. Once took skeletal photos of Cameron's skull to look for common features among JS individuals. Another was looking at growth rates and small stature among JS individuals. And finally the last one was a skin biopsy that is used for genetic testing and research. Cameron was far from fond of the skin biopsy and I must admit that it was a deeper section of skin than I was expecting. It was a small spot, but it took weeks to heal up.
The last night of the conference was a fancy banquet with a sit down meal and a dance. At the banquet they announced that the next conference in two years (2019) will be in Baltimore MD. Since it is within driving distance of us I think we will try to take the whole family to that conference. There was a decoupaged display of all the kids photos that spelled out the word HOPE... the theme of this years conference.
During our last day at the conference an old high school friend of mine, Christina Ash, commented on one of my FB photos of Cameron's skin biopsy. It turns out that she works with the doctor that took his biopsy over at Phoenix Children's Hospital. We ended up making plans for her to pick me up at the Resort after the closing Banquet. We headed to Old Town Scottsdale for drinks and desert. I was expecting it to be a bit of an awkward reunion since we hadn't seen each other since high school and there has been a lot that has happened in both of our lives since then. But as it turns out we laughed so hard that night and had the best time together. I think we enjoyed each others company more that night than we did even back in high school when we were best friends.
The flight home was uneventful and Cameron slept almost the entire way. From the airport we went and picked up Katie from Aunt Laura's house. Took them out to dinner for watching Katie all week, then headed home where Gandma met up with us to drop Colin off to us. Christian got dropped off the next morning. It was a whirlwind of a vacation, but extremely memorable. A true experience of a lifetime.
No comments:
Post a Comment