Meeting, meeting (disney) and meetings

    Ok so yesterday was really pretty much epic! Today though we have a lot of MPS conference activities. So after we all got up and started to get ready we made our way to the breakfast area. Once we sat down we got to chatting with a fellow MPS society member who was actually from the UK (I believe). It was their first Family conference. Shortly after the meetings started.
    First thing was the Welcome which was only about fifteen minutes. The first meeting we saw was hosted by Dr. Muenzer (This is the man who led the clinical study on the drug that helps keep me alive), and it went over Potential new therapies and treatments for the different forms of MPS, they are currently looking at ways to enhance performance of my treatment for patients with mental problems, and the need to get past the blood brain barrier, and they have some upcoming trials in motion.
    The following meeting was updates on research led by Dr. Matthew Ellinwood, and in my opinion it expanded a little more on the research parts of MPS, while still explaining the need for future therapies.
   Then we listened in on the Orthopedic issues meeting led by Dr. William Makenzie. Honestly it wasn't exactly what I was expecting. When it started dealing with MPS2 though it did mention the carpal tunnel hand surgeries, even showed a picture of the hands cut open (I'd never seen that part..). I guess I was hoping on info as to what I can do to further improve.  Got remember just how far I've come already though.
    So after three meetings and getting up at seven am I decided to sneak out and have a little break. I grabbed triston, and we made our way to the bus stop. We were headed to Downtown Disney for a very important errand, and grab some lunch. While waiting for our bus he was a lifesaver and dug out of his bag some candy! We discussed the meetings, and he seemed to sound like he was learning stuff and enjoying it too. Finally our bus came. Triston was surprised to see how accommodating the bus was for handicapped people (for those that don't know the bus will tilt, and has a built in ramp, and designated chairs that can be folded up to make room for wheelchairs or scooters. Once we are all loaded up we headed off, we had about three hours until we needed to be back.
    Once at downtown disney we made our way just looking around, priority was food. We ended up choosing planet hollywood seeing as how he had never dined there before. We got walk in seating which again blew my mind. Overall lunch was pretty good, I know I enjoyed it. Plus its fun to see all the hollywood memorabilia. After we were done we ran into D-Street (Vinlymation store) I didn't buy anything though I wanted to haha. We were running low on time so we started to head back, luckily our destination was on the way. The Art of Disney store. It is one of the few locations that has an embroidery machine. We were getting Mickey ears! (My first pair if you can believe that). We both decided the classic black, with our names on the back. We started to have them shipped to our room, but found out it wouldn't be delivered till the next afternoon (we'd already be in the park by then) so, we ended up waiting for them to be done. Now racing to the bus as we were running late donning our new ears.
    We made it back a little late but, we didn't miss the meeting that was being led by Dr. Muenzer Management of MPS and other related diseases. From what I could tell it was mostly a question and answer round with him form the audience, people asking specific questions. After that meeting let out the next one came in. Shire updates. They basically told us what they could of future studies,a nd what they were looking for in the near, and distant future.
    Now that the meetings were over we retired back to our room until the banquet started. Once we were all ready, we made our way. I'll just say this upfront the food in my opinion was a little too fancy for my taste. Luckily our waiter snagged us a plate of tater tots haha. Throughout the meal they acknowledged members and accomplishments other society members had achieved over the year. Several people were dressed up for the after Prom event. Honestly it was a nice ceremony all in all though, plus the dessert by far made up for the meal in my opinion. Then it turned out they had one last small surprise for us over in the next room while they set up for the prom. Before we went to the room i got a picture with Barbara (who was head of the society and knew me back from when I was first diagnosed). In the other room waiting for us was CHARACTERS!! in total there was about nine I think they start out as four and then switch out with a new group. We ended up getting to meet Goofy, I managed to get Triston to see Cinderella (seriously owe him for that), and lastly we got to meet Chip & Dale. That was an awesome surprise the society pulled out of their sleeves, and a great way to meet characters outside the park.  After we got the pictures we voted on skipping the prom and just heading back to the room as I had to have to get up pretty early for the SPIRIT young adult meeting in the morning, and he will get to sleep in some. So while there were a fair amount of meetings today we did get some disney experiences!

Character day, Ohana, and Pirates!

    Ok so i'll be honest the first day hit quite a speed bump lol, well after a night in the ER, and finally getting back to our room for a well deserved sleep it was time to wake up, and start getting ready for our breakfast at Ohana (A character breakfast). We were all kinda lagging a little due to the late night, but finally we were all ready, and on the monorail to the Polynesian resort. I was using my walker this morning since the scooter wouldn't arrive until later this morning after breakfast. Since I had made a reservation for this meal we didn't have to wait long for someone to get us and bring us to our table. Once we sat down we had a great view of the Cinderella castle, and some great sweet breads to hold us until the food arrived.

    The food finally arrived in a big platter, and honestly it was really good (I'm not a big breakfast eater, but I was really hungry at this point) eggs, sausage, bacon, biscuits, and MICKEY waffles. As we neared the end of our breakfast we had a visit from Lilo (from Lilo and Stitch) I had only seen her in the park one time in my life so I was really excited to see her, Triston wanted to know if he asked her if she would let him braid her hair. I just laughed and was like I don't think so. After she Left Mickey Mouse made his way over to us (You gotta love Mickey) and he was decked out in his Hawaiian shirt. 

    Once we got the pictures, our server came by and gave us two maracas, and said we were to be in the Ohana parade. Basically all the kids and characters march around the restaurant to the song Hawaiian roller coaster ride. Triston was really into it. After we made it around the whole place once, and got back to our table I hoped out of the line and sat down, not wanting to try making it around again without walker or cane. While we waited on the check Pluto came over, and shortly after him one of my favorites Stitch! (another character i'd never had the chance to meet in person so I was stoked about seeing him! After getting the pictures we made our way back to the monorail, so we could meet the guy who was delivering my scooter. As for Ohana I thought it was quite a nice place. 

    While was waiting on my scooter to arrive Triston decided to go to the hospital to get himself checked out. Turns out disney has a shuttle that will take guests to a Center Care from their resort so he called and scheduled one to pick him up with the next little while. While we waited for his shuttle I tried out the scooter, and it was pretty simple in my opinion, though it did go faster than I thought that it'd be able to. Once his shuttle got here mom and I headed back to the room to get some rest before the MPS conference activities began. I uploaded some of my pictures to my laptop, and just kinda chilled for a little while. 

    Triston then called saying that the center care had a three hour wait and wanted to know if we would come and get him (which of course we had no objection). So our GPS was not our friend it kept sending us to the wrong location. We didn't know which center care he had been took to, and the resort told us the one they sent guests to, well we got there ok, but he wasn't there. Then we tried his location, and we still weren't there. Finally i got the address to the Applebee's right beside the center care, and as we were pulling in i saw him heading outside. He wanted to get some med so we search for a Wallgreens and found one that had a walk in clinic however, it had about an hour wait. He wanted to just get over the counter med, but i decided that i needed to rest as to not strain myself and just sat in the chair. Mom agreed and told him he helped get me from the ER the last night, and that we could wait here for him.

    Finally he gave in, and we waited lol, once he went back they tested for strep throat, which came back negative, and he didn't have a fever, but they decided to put him on some antibiotics to try and help clear up all the sinus problems. Once we got his prescription filled we were on our way back to the resort. Once we got back to the room he decide to rest a little but before dinner, knowing I had planned a surprise for the evening after dinner. So mom and I let him rest, and went out to register for the conference.

    Once we had signed in, and received all our info packets, and our badges we looked around a all the conference booths, we did some surveys, and talked to a couple of people. Dinner was starting earlier than expected so I headed back to the room to change, and to see if Triston wanted to sleep or eat. I chose my new custom Peter Pan tee shirt I had had made for the trip, and a long sleeve button down over it because the nights tend to get a little cool. After I got ready I was about to leave when triston woke up, and said he'd go to the dinner. There were so many MPS patients at this conference and the banquet was packed! Upon arrival the music was blasting loud (this coming from a deaf guy). the food choices were great mostly i just remember the Mickey mac and cheese. 

    There were some breakout meetings after the dinner but we had other plans after saying goodbye to mom, we headed over to check in to The pirates and palls firework voyage! We got a bandana, and a scavenger hunt to do while we waited for the event to start. It had clues to things you could find at the resort (you can find nearly all of them on the 4th floor of the contemporary) and they said we did it in record time. Finally the doors opened and we were ushered in to first part of the event. cotton candy, cake, ice creams, pretzels, chocolate coins were piled in the center of the room for the taking. Also in came Captain Hook, and Mr. Smee for photos. We chose to eat some treats and let the line die down for the photos.  When it was our turn they were not a fan of my shirt, and refused to take a picture unless I covered it up lol. Right after we were done a nice woman came and took us ahead of everyone to the docks since with the walker they let us use the elevator. 

    She got us to the boat and we took our seat, we got a great seat thanks to the walker we were on the side that would be facing the magic kingdom later on. Finally the rest of our group started making their way down to the docks and loading onto the two boats (we were on the the Mr. Smee boat). Finally we were setting sail. We had a pirate captain, and he gave off some funny jokes, and had all the families introduce themselves. Soon enough we stopped and got to watch the electrical parade from the boat as all the floats were so close to us, it was truly something to see. Then as soon as it started it was over and we continued on our journey, this time parking in front of the magic kingdom, and we got waterside viewing of the Holiday fireworks show with the sound from the parks! the fireworks were awesome, even Triston loved them! The ending fireworks were awesome they were shot off from all over the park and I seriously think the best view was right where we were. Then our boat headed home. Along the way there was some pirate trivia, I won a sword from the question which land in the Magic Kingdom is the attraction Pirates of the Caribbean located? (answer is adventure land). 

    Finally we were pulling back into the docks when we heard something CROW! Who else but the one, the only Peter Pan!! That's right here to greet us back was Peter himself. So of course we got in line to say hello. We had an awesome Peter he was in high form tonight. I even heard him say to one girl "well get on with it girl" lol. The second he saw my shirt his eyes lit up and he was all over it, wanting to know how I had "flattened him".(Characters love to see themselves on the guests, it shows a deeper interest).  We posed for some photos and he chatted back and forth with both of us, then we had to say goodbye and he told me to make sure I kept him clean, or have a girl wash it for me. Was so happy to get such a fun interaction with my favorite disney character! 

    On the way back to the room Triston said he was glad we went and that he was starting to feel better thanks to the med. Was really glad we didn't skip it myself, but I had told him if he wanted to rest I would have been fine with not going.  Back in the room mom and David were asleep, so we got changed for bed and hit the hay. Have a full day of meetings tomorrow! Tonight was really fun.

First ride in WDW to the ER...

    Ok so a lot actually happened on the first day of this trip, surprisingly I'm in the ER at the moment... How I got here is kinda my own fault I guess. I'll be honest I probably overdid with the walking, but I'm getting ahead of myself.
    Today really started after we finally arrived at our resort (The contemporary) after a long drive I was more than happy to finally see our room. Sadly we were on the second floor, all the way at the end of the resort, so it is kind of a walk to get to anywhere from our room. The room though itself I thought was really nice though! After unpacking we decided to go and ride the monorail to see the Polynesian resort that our breakfast would be (Ohana breakfast). Once we found that and figured that we'd be able to find it the next morning we made our way to the bus stop, deciding on going to downtown disney, so mom and David could get some dinner. I decided on waiting on Triston who was flying in a little later. (Kinda wish I had ate a little bit more than what I had looking back lol).
    Once we got off the bus we walked around looking for somewhere to eat, and David led us to the rainforest cafe, I was kinda against it expecting a long wait time, but we were seated upon walk in. They ordered a couple of appetizer platters, and I ate some off of their plates. While we were eating I called and checked on Tristons Magical Express reservation making sure everything was set when he landed. Of course the moment i get someone on the phone the restaurant comes to life with noise and sounds making it almost impossible to hear, but finally I managed to get everything settled, and when I hung up the lady told me to enjoy rainforest cafe.
    After dinner I made a quick run through the Days till christmas store, but mom was getting cold so we walked back to the bus stop and made our way back to the resort. Once we made it back to our room, Triston called and said he had landed.. however said that his luggage had been put on a late flight, so he was trying to see how he would get his luggage. Finally though he was on his way to the resort, so I made my way back to the resort Lobby to wait for him. So far crowds were actually pretty nice not a lot of people, but I knew as it grew closer to christmas more, and more would arrive. I went over to the front desk while i was waiting and made sure my magic band was linked to my debit card, and they got it all straightened out.
    Finally he arrived, and we hugged and chatted a couple minutes. I could tell he wasn't feeling one hundred percent well, as he was telling me last day of his ski rip he started feeling little rough with sinuses. Finally we started to make our way back to our room. Along the way we ran into one of my MPS friends Samantha who was also here for the conference. As you can see thats a lot of walking with just the cane for one day. Seeing as he was hungry, I got my mom to drive us to the main building to look for something open we could have for dinner. Here's where things started to go bad. The second I got in the car, my heart went off. An SVT attack. Honestly I felt like crap, the literal instant he gets here and my heart has to go off. What an awful welcome that must have been. (While this has happened before to me its not common and usually i can convert back on my own.) I told mom what was going on she had me lay down. I told Triston to go get some dinner and we'd be in the room which he was so nice about and understanding.
    We tried everything, she tried throwing ice on me, breathing, all the tricks. It wasn't converting back. He comes in the room asking if i was ok as he had saw an ambulance in the parking lot, and was scared it was for me. Mom went out looking for the paramedics to see if they could help, luckily she found them, and they came to me. They gave me an IV with a large tube, and told me what they were about to give me was gonna feel funny, I just looked at Triston as they argued over little things. The whatever they gave me technically is supposed to stop the heat so that it stopes the SVT. It worked however, in my opinion it made me feel very heavy as if I was being buried. after they checked the monitor and made sure my heart rate was getting to normal they loaded me onto the gurney, and whisked me away to the ambulance to the ER for observation. Which is where I am now. Honestly I'm ok now heart beat is back to normal and they have done bloodworm and X-rays, they've cleared me and we're just waiting for the doctor to sign us out.
    Im getting a little stir crazy as we've been here a good while David and Triston are on their way to get us. Mom has told me i'd be getting a scooter for the rest of the trip, at least for park day. Honestly I'm really glad I scheduled the breakfast for 10:45 am will give all some time to rest. Well this was definitely a rememberable first day at Disney, especially first ride to the ER in celebration.
    You know even though I'm in the hospital I looked back, and it was still a pretty good day. Just needed to take it a little bit easier here on out.

The night before Disney

    The day has finally come, the one I've been praying for, for so long. Within the next seven hours will begin our trip to walt disney world! I'm as excited as I should be while trying not to be too overly excited, but with me and disney not always that easy. The car is loaded (well at least with my bags and walker) my books are selected for the drive however, upon looking at my battery life all electronics could use a good charging.
    I can't really seem to fall asleep, but honestly i'll have nine hours to in the car, I'm just ready to be there. Triston will be flying in, and hopefully arriving at the resort around 8-9pm (Kinda hope he's as excited as I am). In the car on the drive down will be Mother, David, and myself. On the way back will be adding one more.
    I have to admit there have been a lot of... setbacks? Leading up to this trip, so hopefully for the most part we will have smooth sailings ahead. I've planned a few disney surprises along the way for us to enjoy leading up to the day we get to go to magic kingdom, along with the conference activities. Praying that this trip goes over well, and everyone has a blast. Looking forward to spending this holiday trip with a friend, and family.