Waverly & I spent this past weekend at Disney World for the MPS Society's family conference. It was absolutely wonderful.
We flew down early Thursday morning and she was perfect on the plane. We took Disney's Magical Express to the resort and checked into a lovely room at the Coronado Springs. My friends were all coming in on flights later in the day, so we ventured over the Downtown Disney for lunch and a walk. We came back to the hotel and met my friend Laura and her daughter Julie. Julie has Sanfilippo. Laura and I have been phone/email friends for about a year. It was wonderful to finally meet and get to know one another. Julie is adorable! It was her suggestion that we attend the conference and I am so glad we did.
The MPS Society hosted a welcome banquet that night. I was totally impressed. They had a huge banquet hall in the convention center. It was filled with tables and a delicious selection of foods, including kid friendly fare (chicken, applesauce). Mickey, Minnie, Pluto, Donald and Goofy were also there to meet the kids. There was a professional photographer available for family portraits. They had a man making balloon animals. It was fantastic. Wavey loved meeting the characters. She was especially fond of Pluto this go around.
That night all of the Sanfilippo parents got together for a Q&A type session. There was childcare provided and I have to say I was quite apprehensive about using it. That is until I checked it out. It was staffed with some family and friends of a local Orlando family whose daughter has Sanfilippo, along with some professional child caregivers. They had a movie area with a huge screen and pillows scattered all over the floor, a craft area, computers, smaller tvs, music, hula hoops, tons of toys and every hour was a different activity. Ronald McDonald stopped in, clowns, magicians, etc. It was amazing!! Wavey loved every moment!
It was incredible to be in a room made up entirely of Sanfilippo parents. The atmosphere was one of understanding and assistance. Questions were asked and then parents were able to give some advice based on their experiences. All around the room I was able to meet people who I had spoken to immediately after Waverly & Oliver were diagnosed or I had been able to speak to them after their child(ren) were diagnosed.
Friday was filled with meetings and sessions. I have to say that I didn't come away with a lot of additional knowledge of the disease. Instead I felt energized by being around some many other families who just get it. I have never seen so many kids in MacLaren Major Elite strollers in my life!! The connections among the other parents was the highlight of my time.
Saturday we went to the Magic Kingdom with my friend Laura and her daughter, plus my other friend Cari and her family (her daughter Jessie also has Sanfilippo). All of the girls are about the same age. It was so cute to see them together. Wavey was so expressive on the rides - giggling the entire time. She also really enjoyed the electric light parade in the evening.
Sunday we slept in - 7:30, which is huge in Wavey World. We had breakfast, said goodbye to some friends and went back to Downtown Disney for a few hours. We bought Oliver a Tigger stuffed animal and Matt some sour gummy candies. Of course we went to Ghirardelli for a scoop of ice cream for Waverly and a sea salt caramel hot cocoa for me - YUM! Then back to the hotel to take a walk and play on the playground before heading to the airport.
Fortunately I had changed my flight on Friday morning. We were supposed to fly out Saturday night, but with the snow storm I knew the flight would be cancelled. The airline rebooked us for Sunday night, so we had a confirmed seat. Our flight was delayed a bit, but we were back home around 2 am.
Waverly was a super star. She couldn't have been better the entire time. I had a fantastic time with her. As much as I missed Matt & Oliver, it was truly a treat to spend so much time with her..especially in such a fantastic location. She was super happy and loved all of the attention given to her by the other families. She did a lot of walking around the resort and park, which tired her out each night. I am so proud of her.
(I will post some photos later. I forgot my camera, so I will have to wait for others to send me some pictures.)