Thank you so much to everyone who helped get us to the Costello conference in Florida! We are SOOO greatful and got so much invaluable information and created some friendships that I can see lasting a lifetime! I posted a few blog posts about what we learned down there if anyone is interested in the details or if your a fellow Costello person and want to copy my notes! I didn’t take many photos inside the conference itself because I was trying to respect everyone’s privacy, also I just wanted to stay focused on learning as much as I could… when i take photos I get carried away and snap lots of them and sometimes miss things going on! 🙂
Thank you thank you to board members who put together this conference! It was the most professional and organized event I have ever been to! It was a great family experience and learning experience! We plan to go to every conference from here on out. I have a new appreciation and respect for those of you who put these together! 🙂
Thank you to all the physicians who took time to fly down to the conference, who took time to meet me and Zane, who took time to research this incredibly rare and complex syndrome! You are our heroes! (And there were SOOOO many physcians involved)
So we arrived in Florida On Sunday July 28th in the evening! It was a long day! Check In, Security, everything went smooth… Zane got an extra seat on the plane so that was nice to not have him on lap 🙂 We arrived and it was raining! haha… we had to sit in the plane while we waited for the gates to open to park the plane… Zane was not having that! He hates when he’s buckled into a seat and the vehicle is not moving! But otherwise he handled his first flight very well! From there we got our bags and nothing was missing (it was quite the experience though carrying so much medical equipment on our back… LOTS of bags!) we rented a minivan which had me frustrated for a minute but when we finally got in the car… we headed to the hotel. We were blown away by how fancy the hotel was at such a great rate! Truely grateful for the location they chose for the conference!
Here’s a photo of Zane on the plane :
This is after I got him all settled in our hotel room. We arrived and the oxygen that was supposed to be waiting for us was not there so we made do with the small concentrator we had on the plane. Our special needs nurse from back home rescued us and made some phone calls and we were able to get some tanks by the second day there.
This is a view from inside of our hotel. The middle of the hotel had a very tall ceiling with restaurants in the middle. This is a view off the balcony for our floor to the center of the building. There were TONS of board rooms that we were able to use. On research day each doctor had their own meeting room and you’d go to each room with a “passport”. There were a few cousin syndromes down there as well Noonan, CFC, Multiple Lentigines and us (Costello Syndrome) everyone had their own section of the hotel. The hotel was perfect for how big this conference was.
We arrived on the 28th but the conference didn’t start til the 30th. So we had two days to hang out as a family and do fun stuff first! On the 29th me got to meet a lot of the Costello Syndrome families on a trip to Sea World! We attended an education program together then we were all off our seperate ways through the park.
I think Turtle Trek was probably his favorite. We got to skip everyone in line and go right up to the tank (they had a row in the front for disabled and then a whole barred off area where other people were behind us. They were very accomodating for disabled at Sea World) this is our little sticker that got us through every line and special seating in every single show:
This is Zane watching a 3D movie about a turtle’s journey. This was one of the highlights of our trip… the show was absolutely incredible. It looked like things were right in front of your nose and within reach.
The killer whale show was also one of the most amazing experiences while we were there!
The next day (30th) we didn’t have to check into the conference til 6pm for orientation. That day we took the whole family to Kennedy Space Center. We got to see the space shuttle Atlantis, that exhibit just opened at the end of June. We took a bus tour (Zane got to use the handicap lift to get in and out of all the buses. We couldn’t leave his stroller behind with all of his medical equipment – oxygen, food pump, meds- so we got special handicap treatment here as well) The bus took us to the Vehicle Assembly building, the observation gantry and launch pads then dropped us off at a building where they housed the Saturv V apollo spacecraft. This thing was WAYY bigger than I thought it would be! Our trip at Kennedy Space Center was a great learning experience for the kids and a lifelong dream of mine. We really enjoyed being able to go there!
Then the conference began right away that evening! We registered and everyone enjoyed a dessert together that was provided through the event. The next day was “Meet the Researchers day” I was given a passport and went room to room to meet several doctors who were collecting information from us to conduct their newest research. This day they collect information and by the next conference they share their results. They do this every other year and the new information is coming in rapidly as these physcians continue to work so hard for us Costello Syndrome families. I met a few genetcists including Dr. Karen Gripp, a cardiologist Dr. Angela Lin, endocrinologist Dr. Daniel Doyle (he is creating growth charts and curves specific to Costello Syndrome. For example… Zane’s height is in the 3rd percentile on the CDC chart for us “average” people. But when I put his information into the Costello chart he is between 50 and 95th percentile.. in the middle so maybe 70percentile? It gives a better comparison on if he is doing well for his age and specific syndrome.), we met Dr. Thacker, orthopedist, who gave me some of the greatest advice on what I need to do for Zane, we gave saliva samples from our whole family to Dr. Rauen who is conducting research on our genes including Zane’s siblings, we took part in a 3D Facial analysis where they took a 3D photo of Zane for their database and to study and point out features that are the same amongst people with Costello Syndrome…. there was also a doctor collecting data for Cognitive and Behavior who I didn’t get to that day (it was a long day and hard to get to everything), Dr, Katzenstein. We spent half of the day meeting the researchers and the other half with the family and other Costello families at the hotel pool! (We were split into two groups in order to fit everyone in)
Here is Zane cooling off :
We jumped right into Family Day the next day. We started with Yoga (Me and my son Jacob attending with one other Mother & daughter) , breakfast was provided through the conference then we had a little Genetics class. During the genetics class they helped explain in a fun way what chromosomes, nucleus of cells, where the genes are and how you make a specific strand of DNA to represent the specific mutation your child has and made bracelets to represent the strands. After that we went to Costello Syndrome craft fair… I bought two bracelets (one for me, one for my daughter) from a young man who has Costello Syndrome (he picks out the beads and strings them, his mom ties them together), i got an ipad case and a couple silicone wristbands that say “Fight for Costello Syndrome” on them. They also had someone from “Gatorland” bring in an alligator and we all took turns holding it 🙂
Here’s me holding an alligator (Im not looking my best here.. maybe its the lack of sleep and exhaustion hahah)
We all had lunch together then we decided to check out downtown Disney for some shopping!
The following day I attended medical lectures all day! Everyone talked fast (45min lectures each) and you had to choose between two lectures at each session. There were so many choices and it was hard to choose 1 between two… i wanted to hear EVERYTHING. I guess the next conference I will hit the opposite ones than I did this time. I can also copy notes from others. My pen could not write fast enough, I was getting so much good solid, factual information. It felt refreshing… like FINALLY someone was sitting down and explaining everything to me about our son. Instead of hearing so many “i don’t know I’ve only seen one other kid with Costello syndrome before” or “your going to have to bare with me as your son is the first kid with Costello Syndrome I’ve had as a patient”… we did get a lot of “I don’t know more research has to be done” but you could see they were actually conducting the research, and the information was coming in rapidly… this gave me so much hope! And now I have doctors we can consult with , with our home doctors to work as a team in the event we need them. If you want to see the topics I learned about go to “Categories” and look at the blog posts I made where I am sharing my notes from the conference… hit the category “2013 Costello Confernce” to see them.
The day after the medical lectures we had a “workshops” day. These were basically more lectures given by therapists or other professionals on topics not necessarily specific NEW information about Costello Syndrome. I saw a vision therapist who helped me better understand Zane’s visual impairment, I listened to a lecture from a dentist, saw a speech therapist who talked to us about communicating using the ipad and other apps great for special needs, and lastly I attended a Nutrition lecture given by a gastroenterologist who I am hoping decides to get on board and join the researchers to figure out why these kids have such severe feeding and reflux issues. We had breakfast, lunch and dinner on this day as part of the conference together with the Costello families. This was the last day of the conference and it ended with a big bang, banquet dinner with DJ and dancing, raffles and a quilt auction. The quilt auctioned off for $1000 ! It was handmade by one of the Costello mothers who collected quilt squares from all the families. My daughter won a necklace in the raffle, she was SO happy about that! And we danced our hearts out while feeling so sad the conference was ending and we had to say goodbye to our new friends. I really can’t say it enough times how many people we met who i see having long friendships with, watching our son grow up with some of the other kids. They are a very social, outgoing, VERY happy and friendly group of people.
The last two days a lot of families were gone, but we planned two extra days to do more fun stuff with the kids. We went to Walt Disney World! and then Legoland!
Zane was involved in as much as he possibly could at every single park. At Disney world he went on every single ride with us and to every show. This is a photo of us in handicap seating again… at the Laugh Floor , Monsters Inc. comedy show (which was hilarious!)
This is Zane on the Little Mermaid ride with me and my daughter, Caitlyn.
And of course, the Magic Kingdom… Cinderella’s Castle!
Legoland was less accomodating for handicap, but we did have a great time there as well. I paid extra and reserved a cabana in the water park. I knew Zane would need to cool off so that went well. I am glad I reserved it! He got to ride in the lazy river a few times over and he would giggle when my raft would bounce off the wall and spin around to face the other direction. He even tolerated these little things that would squirt water at you while you cruise down the river. He stayed in the kiddie pool with his Dad for probably a good hour, being in the water the whole time. Legoland was half regular park and half water park. The regular park waS HOT and it rained a lot this day which shut down a lot of the rides, but we did go to a 4D Lego movie while it was raining. During the movie they had it snowing from the ceiling during one section, a mist came out, smoke came out of the screen area at another point… it was a cool little show!
These are my crazy kids in the cabana :
And that was it! We went home, we packed and got ready to go home!
We woke up at 5:30am and checked out of the hotel, dropped off our mini van, dropped off the oxygen, checked in our bags, went through security (I got stopped because they thought my pulse oximeter machine was a bomb in my bag lol… they ended up checking almost all of our bags since i had so many machines on board) then we just sat and waited for hours in the airport, we were early but on time! We flew home, Zane slept on the plane… we got upgraded to FIRST CLASS and when we landed my Dad picked us up and we went in our own mini van. This was a depressing day… no one wanted to leave Florida! We loved the weather! We loved the hotel! We loved our Costello families! We loved everything and we wanted to stay! I am looking forward to the next conference ! I can’t wait til they announce where it will be so we can start planning our next trip!
Zane sleeping on the plane :
Again, thank you to everyone for making this possible for our family!