Have a Magical Day

It has been a busy summer for us so far. We spent the end of June and beginning of July in Orlando, FL for the annual FSMA Conference. Anyone who has ever traveled to Walt Disney World knows what a magical (& expensive) place it can be. Our kids literally explode with excitement when they hear they are going there and the fact that they were going to be there with some of their friends and family made it even better. The Conference was great. I always enjoy seeing some of my old SMA friends and meeting up with some new ones. I have also always enjoyed getting to speak one on one with so many SMA Researchers and SMA Doctors. This truly is like going to a family reunion. Last year's conference was in California and I didn't take Dylan. Besides the fact that I missed him terribly, the conference just didn't have the same feel for me without him being there. Having him with me not only puts my mind at ease but it is also a blast to watch him interact with the other kids with SMA. Heather jumps right in there too. Both kids did a lot of fun things while we were there. Dylan built a remote control Mater (character from the movie Cars) at Downtown Disney. Heather and her BFF Emma went to the Bibbidi Bobbidi Boutique and were transformed into Rapunzel and Princess Tiana. There was "Pixie Dust" everywhere...I mean everywhere, but it was worth it to see how happy it made them. We became very familiar with what the kids called Poncho Time during the Thunderstorms or as I called them, Mini Hurricanes. Dyl actually used to sing It's Poncho Tiiiiimmmeee every time it rained and gave me a fist pump. I think I need to ease up on my Jersey Shore watching. I paid $60 in wands at Harry Potter World which did nothing to stop the torrential rain that occurred. My best spells didn't work. I guess I was having an off day or maybe I just drank too much butterbeer.  In addition to seeing our SMA family, Ron's parents and his brother, Andy came up to visit us. We also were able to spend some time with our friends, Jackie & Sal. Gen and I actually met up with them one night and we stayed at Magic Kingdom until 1:30am. I think we rode almost every ride in the place. I got to go to the Outlet stores with Gen. Ron got to golf (twice I might add). Ron and I went on a wonderful date night where someone (not me) had one too many Nutty Irishmen. We also celebrated my birthday at Bongos which was a great last night to our trip.
On this trip I learned:
1. The Disney buses are slower than the Pony Express.
2. I need to take a Valium or drink a full bottle of Wine before entering Harry Potter World.
3. Everything in Disney costs at least $10 and that a bottle of water is considered a "snack" (Heather didn't care too much for that!).
4. At the Grand Floridian they say "Have a GRAND day!" instead of "Have a MAGICAL" day!" Maybe that is because of the GRAND prices they have there.
5. Disney Ponchos cost $8.50 (I found something less than $10!!!!!).
6. Bon Jovi cover bands while good, are just not Bon Jovi.

Now it is back to reality and getting back to eating something other than Mickey Ice Cream Bars, Mickey Rice Krispie Treats, Mickey waffles, Mickey Popcorn, etc. I think if I would have eaten one more thing shaped like Mickey Mouse I would have sprouted a tail and some mouse ears. Back to yogurt and salads, although maybe I did sneak a couple of those rice krispie treats home.

Bibbidi Bobbidi Boutique!



MJ, Peg, & Dyl



Heather & Madison

Dyl & Kiley

Kevin & Ron thought highly of the Theme Parks

Meeting Rapunzel and Flynn

Arthur & Dyl at the Boma

More Butterbeer!!!!!!

Meeting Phineas & Ferb

Magic Kingdom at 1am!!!



Last Night Celebrating at Bongos



Best Buds at the TRex Restaurant



Some of the Greater NY Chapter Families


When we got home, Ron surprised me with tickets to the Yankees/Rays game on Saturday, July 9th. Just by luck of the draw this was the game when Derek Jeter hit his 3000th hit. I have been to many many many Yankee games but this one by far was one of the most special. The Stadium was just electric. Dylan kept saying how awesome it was. When the game was over a man came over to us and gave Dylan a limited edition pin to commemorate the day. It was nice to see someone do something nice for Dylan. Heather was just excited that she was able to have pink cotton candy. I was glad it wasn't shaped like Mickey Mouse. Truly a magical day.