Great vacation and great memories made on the kid's first trip to Disney World. We are excited about how accessible Disney is for people in chairs. Maya can truly have a wonderful time there and not worry about getting on rides. We can’t wait to go back in a few years! The FSMA Conference flew by this year, but we still enjoyed being around other SMA families.
Here's what we did....
Day 1: Wednesday, June 22nd – The Drive
Drive to Orlando. Nani and Papa drove with us and Maya sat in their car. Kaden stayed with Gigi and Papaw and flew with them Thursday. It rained pretty much the entire way to Tallahassee but we finally made it there around 11. Maya had her bouts of asking repeatedly if we were there yet and I literally spent the entire drive planning out our days at the parks and which rides to ride. That a way to spend 12 hours!
Day 2: Thursday, June 23rd – FSMA Conference starts
We finished the drive to Orlando and arrived at the hotel (The Swan) around 1. Charlie left to get his parents and Kaden from the airport and the rest of us stayed back and just unpacked, rested, etc. We walked around the hotel area and saw the pool (the first and last trip to the pool actually).
The FSMA Conference Meet n Greet was that evening and Maya had so much fun in her powerchair this year. It was a carnival like scene with pizza, popcorn, cotton candy, nachos, and ice cream. They had Mickey ears and balloons everywhere. A real treat for everyone! The Disney characters were there also but Maya wanted nothing to do with any of them. In fact, when she saw Mickey, she started crying hysterically and wouldn't let me even stay in the ballroom with her. We had to leave the room entirely before she calmed down. Maya loved the bubble blower table the best. Kaden got some cotton candy from Papaw. This year Maya even participated in the relay race. It was good to see some of the friends we have made and Charlie and I were able to hang out with some friends that evening.
At this year’s conference we sent Maya to the Kids room. We were able to find a buddy or two to stay with her. There were two rooms – a toy room and a craft room. Maya spent most of her time in the craft room as this is what she loves to do the most. We put Kaden in the baby room and he did great as usual. We always get comments on how good a baby he is. After the usual sessions, we grabbed some lunch on the Boardwalk with our friend Angela. Some more classes and then off to Epcot.
We took Maya’s powerchair to Epcot, but it was the last day we would do that. She would either a) stop at every single corner to look around, 2) not drive because she was scared, or 3) drive so fast that we couldn’t keep up with her. It was way too crowded to deal with a 3-year old in a powerchair anyway. She was so scared of EVERYTHING that first day. We managed to get to one ride at the Land of the Living and see the Finding Nemo show. And then it started to pour down rain and we were literally stuck in a café the rest of the evening. We never made it to the FSMA Dessert Party and the fireworks. Instead, we were teaming up to find the best rain gear. Not the greatest way to start our Disney adventure! Unfortunately, the forecast wasn’t looking good for the next few days.
More crafts for Maya and sessions for the rest of us at the conference. We knew it was going to rain again, so we decided to skip out on the afternoon sessions at the conference (we were at Disney World after all!) and head straight to Magic Kingdom.
Another park, another scared little Maya. This time we took her in the stroller. Much better option! It started raining as soon as we got off the Monorail. I think we stayed under the entrance for about an hour before getting enough guts to head into the park. So goes all the pictures with the ponchos! First ride, Peter Pan. She was scared and needed someone to hold her the entire time. No smiles this round. 2nd ride was the carousel – something Maya wanted to do because in no way shape or form did she want to ride Dumbo (because it was an elephant). We somehow convinced her that there was a “bumpy” car ride like at ITZ and she was excited. We didn’t tell her it was Dumbo until about half way through the ride. She LOVED it. Then she continued to tell us how much she loved Dumbo and he didn’t scare her. Made it to the Pooh ride before heading to Maya’s princess appointment. All the while, it rained off and on. Kaden was just watching it all and laughing, smiling, eating, sleeping. Just being a great baby.
Maya started having more and more fun as the day went on. We were able to get Maya a guest assistance card and we were allowed to go through the alternate entrance for each ride. It’s not intended to let you skip ahead but that is exactly what they let us do. Sure, we felt bad about skipping the lines, but really, if this is what we “get” to do for all that Maya has to go through on a daily basis, it doesn’t make you feel so bad anymore. Most of the rides we had to transfer her into the ride, but there were a couple here and there that she could stay in her stroller.
We decided to skip the parade and fireworks at Magic Kingdom that evening and headed to Downtown Disney to eat at TRex. I think it was 10 pm by the time we sat down! Maya stayed at the entrance with Charlie for quite sometime contemplating whether she would go in to the restaurant. It didn’t help that there was giant TRex in front of her! She found an octopus that she liked and it calmed her down, but she would not sit in her chair the entire night and had to sit on someone’s lap. It was a neat place – similar to Rainforest Cafe.
Day 5: Sunday, June 26th – FSMA Conference and Hollywood Studios
The last day of the conference usually has a summary of the research meeting. Pretty informative meeting for highlights on the progress of developing treatments. It’s amazing how many people are taking a part of making these treatments. It’s frustrating for the families, but I can see similar frustrations in the eyes of the doctors and researchers who work on SMA treatments every day. So here’s the update: Not much going on in stem cell world. Not good to hear. Gene therapy is pretty far away and will likely not help Maya ever stand or walk. There are some promising drugs out there going to trials soon that should stop or slow down the progression of the disease. Now I know why so many families skip this meeting. Its great at first, but year after year, to hear that your kid “may” stabilize but it is likely that they will never get better is a tough message to hear over and over. As Maya gets further and further away from the initial diagnosis, it will become that much harder for any of these drugs to help her. WE WILL NEVER LOSE HOPE. We continue to pray for a cure, a better life for her – rather a more adaptive and accessible life. Until then, we enjoy every minute we have with her. We are continued to be amazed by women with SMA who get married and have kids. At the same time, we try not to get too ahead of ourselves. Let’s just tackle potty training at this point and getting Maya into the right school.
Switching gears – back to the fun part.
Maya had to say bye to Nani and Papa and she just cried to see them leave. Nani did some “I feel guilty” souvenir shopping for Maya and let her buy whatever she wanted. I think Maya ended up wit a Disney juice cup, some pretzels and a Goofy golf club cover that she thought was a puppet.
We headed to Hollywood Studios for a few hours. We had a few rain showers that morning, but actually made it to this park with no rain. The only day at a park with no rain! Charlie and I rode Aerosmith, the g-parents were too scared to go to Tower of Terror. We watched the Little Mermaid show and this was Maya’s favorite show. Or at least top 2. Headed over to Toy Story which she LOVED and so did all of us. One of the best rides/attractions at Disney. We tried to make it to the Muppet Show or anything else, but Maya wanted to ride Toy Story again. Some of the lines were pretty long so we didn’t get to do much before having to leave the park for our dinner show. We said we would head back to HS another day, but never did make it back there. However, this was the ONLY picture we got with Mickey – a picture with a picture of Mickey. She wouldn’t dare have a pic with a live character!
We decided to skip the parade and fireworks at Magic Kingdom that evening and headed to Downtown Disney to eat at TRex. I think it was 10 pm by the time we sat down! Maya stayed at the entrance with Charlie for quite sometime contemplating whether she would go in to the restaurant. It didn’t help that there was giant TRex in front of her! She found an octopus that she liked and it calmed her down, but she would not sit in her chair the entire night and had to sit on someone’s lap. It was a neat place – similar to Rainforest Cafe.
Day 5: Sunday, June 26th – FSMA Conference and Hollywood Studios
The last day of the conference usually has a summary of the research meeting. Pretty informative meeting for highlights on the progress of developing treatments. It’s amazing how many people are taking a part of making these treatments. It’s frustrating for the families, but I can see similar frustrations in the eyes of the doctors and researchers who work on SMA treatments every day. So here’s the update: Not much going on in stem cell world. Not good to hear. Gene therapy is pretty far away and will likely not help Maya ever stand or walk. There are some promising drugs out there going to trials soon that should stop or slow down the progression of the disease. Now I know why so many families skip this meeting. Its great at first, but year after year, to hear that your kid “may” stabilize but it is likely that they will never get better is a tough message to hear over and over. As Maya gets further and further away from the initial diagnosis, it will become that much harder for any of these drugs to help her. WE WILL NEVER LOSE HOPE. We continue to pray for a cure, a better life for her – rather a more adaptive and accessible life. Until then, we enjoy every minute we have with her. We are continued to be amazed by women with SMA who get married and have kids. At the same time, we try not to get too ahead of ourselves. Let’s just tackle potty training at this point and getting Maya into the right school.
Switching gears – back to the fun part.
Maya had to say bye to Nani and Papa and she just cried to see them leave. Nani did some “I feel guilty” souvenir shopping for Maya and let her buy whatever she wanted. I think Maya ended up wit a Disney juice cup, some pretzels and a Goofy golf club cover that she thought was a puppet.
We headed to Hollywood Studios for a few hours. We had a few rain showers that morning, but actually made it to this park with no rain. The only day at a park with no rain! Charlie and I rode Aerosmith, the g-parents were too scared to go to Tower of Terror. We watched the Little Mermaid show and this was Maya’s favorite show. Or at least top 2. Headed over to Toy Story which she LOVED and so did all of us. One of the best rides/attractions at Disney. We tried to make it to the Muppet Show or anything else, but Maya wanted to ride Toy Story again. Some of the lines were pretty long so we didn’t get to do much before having to leave the park for our dinner show. We said we would head back to HS another day, but never did make it back there. However, this was the ONLY picture we got with Mickey – a picture with a picture of Mickey. She wouldn’t dare have a pic with a live character!
Another late night meant another late morning. We finally got to the park around noon just in time for another rain shower and afterwards a very humid day. We saw just about everything at Animal Kingdom despite the huge crowds. We began with a show – the Lion King. Maya was so frightened and had to sit in someone’s lap again! I caught her waving every now and again to the big fake lion that was behind us. We had front row seats and just about every 5 minutes someone was trying to “entertain” her but she wouldn’t flinch. Just plain scared.
After a short shopping trip for musical souvenirs from the Lion King show, we went on the Kilimanjaro Safari ride through a real safari, a few picture stops with the Tree of Life behind us and then watched the parade. Went for a stroll in the Maharaja Jungle Trek. While the kids slept, Charlie and I rode Kali River Rapids, where I got soaked and then we rode Everest twice. Great rollercoaster there. After Maya woke up we went to see a show – Finding Nemo which was pretty neat and she really liked it. Then onto Tricera Tops which is like Dumbo, but clearly not the same because she wasn’t nearly as excited. The adults took a last ride on Dinosaur before closing down the park.
We had dinner at O’Hana that night which is kind of like a Fogo de Chao on a much smaller scale. Unlimited food two nights in a row. We took a lot of pictures at the Polynesian hotel where the restaurant was and decided we wanted to stay there on the next Disney trip!
We decided to switch our free day from today to Wednesday and it was a great decision because it only rained intermittently Tuesday. Still had to break out the ponchos. The rain left us all very hot and humid. This was our full day at MK so we went to all the rides and shows pretty much – Aladdin, Jungle Cruise, Pirates of the Caribbean was a favorite of the whole bunch. Then I talked Gayla into riding Splash Mountain with Bill and I. She got wet and then swore to never ride another wet ride again cause of her hair! LOL! Charlie and I rode Big Thunder before we all headed to Haunted Mansion (Maya was surprisingly not scared here). Went back to Fantasyland for a must ride no It’s a Small World. Maya had great big eyes on this one – “like a dollhouse” she kept on saying! She kept telling me “oh look look, mommy…look look” Very cute. After this point it pretty much rained for the next 3 hours. We made it to Tomorrowland and rode Space Mountain while kids slept. I took Maya on the speedway to drive her own car and then we finished it out with Buzz Lightyear and Astro Orbiter. Whew! Rode it all, missed a few shows.
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Busy 12 hour day at the park…and a 1 am bedtime….
Day 8: Wednesday, June 29th – Free Day….Ice Cream buffet!
I think we all slept in til 10! We were going to go to the pool, but surprise, it was raining. No pool entire trip. So much for all the swimsuit shopping I did for everyone! We got ready and headed “off campus” to lunch near my cousin Sonal’s house. It was like tornadic weather all day. Good day to skip the park, but also our last day there so we were a little bummed. Sonal invited us to her Marble Slab store where we were all treated to whatever kind of ice cream creation we wanted. Maya didn’t want any of course and just ate some almonds! Kaden tried some ice cream as well….
Today turned out to be our last day at the park. Since we got rained out yesterday, we hurriedly packed up the car and headed to the park. Charlie had already taken Bill, Gayla and Kaden to the airport, so we were with Maya to enjoy a few hours before the next big rain! We went back to Magic Kingdom and rode Dumbo, It’s a Small World, Aladdin and Pirates. Then finished up some more souvenir shopping. It started raining much again, but those $8 ponchos sure did get their use! We started the drive home around 5.
Long drive home, but a great chance to catch up on pictures and blogging. Maya didn’t want to go home, but she missed Kaden. How cute. Maya did great on the drive home. She didn't fuss much. Spent alot of time on her iPad, coloring and playing with the toys I brought for her. She just talked and talked (and talked) about Dumbo and all her other favorite Disney things to do. She had a great time and we are just so happy she enjoyed it all - and Kaden too...
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