EB Conference

We had a wonderful time at the EB conference in Florida and we would like to share with you our adventures.  

Please ignore all the formatting errors in this post.  I am trying to post a lot of pictures and the site doesn't want to work correctly.  It's late and I'm not going to fight it.  

We were able to fly to Orlando, thanks to the fact that airline prices dropped to the point that it was very close to the cost of driving.  AJ loves to fly and loves turbulence even more (me not so much).

The conference was held at the 

Gaylord Palms Convention Center.

We had a very nice room overlooking one of the large interior

 climate controlled areas.

This is the daytime view from our balcony. 

This is the evening view

AJ can show you that they even had live alligators!

The conference went beyond our expectations.  DEBRA had top researchers and medical specialists.  We heard about protein and gene replacement therapies that will soon begin human trials.  They had sessions on EB related surgeries, eye involvement, bone and anemia problems.  We had the opportunity to talk with a Ear, Nose, Throat specialist that recommended that AJ have his tonsils out.  We really didn’t want to have that information, but in the long range picture we understand why it would be a good idea.  We also came home with the much needed information on new bandage technology to help with healing AJ’s wounds that he has had since birth.  Debra provided some of our meals and allowed us time to talk with and encourage other families living with EB.This is Katie at the conference table.  She and Kim were a great help in allowing me to attend the conference while they entertained  AJ.

AJ was able to spend time with other children with EB.  

His first comment that he made when seeing another child in bandages was,

 “Hey, he looks like me!”

The hotel brought in Disney Characters to meet the families.  

Here is AJ and Kim with Shrek and Fiona.

Each night AJ loved to swim in the splash pool.  It started with a Disney splash party with the Madagascar characters.  The pool had a huge media screen and after the party they played a Disney Movie.  AJ loved sitting in the water while watching a movie.  

     

                                                                                           

One of the conference sponsors provided us with an evening trip to Planet Hollywood for dinner.  

After dinner we were treated to, “ La Nouba”  with Cirque du Soleil.  It was an incredible show and a great ending to the conference.

After the conference we took AJ to Disney World to meet Mickey Mouse.  This is something he had been talking about for six months.  What we did not expect was to meet ALL of the Disney Characters.  Shortly after we arrived, the Disney Staff invited AJ to a private, “meet and greet”.  Needless to say, AJ was overwhelmed.  

After the Character meeting AJ went on the rides.  

(Wow did he enjoy them)  

Disney was very kind to AJ.  They shortened his wait for rides so that he did not have to spend a lot of time in the heat.  Between the air conditioned areas and his cooling vest he did very well.  In fact he just kept going and going.  Our last stop at Disney was to say goodbye to Mickey Mouse.

Our next stop was a visit to Rick and Martha’s home.  Their daughter, Emily is married to our son Aaron.  We spent a great day with them.  We visited Tarpoon Springs and we enjoyed some shopping before taking a boat ride into the Gulf of Mexico.  The boat stopped on an island and we went out in search of shells. 

After an evening of swimming, visiting and a good night’s sleep, the time came to say goodbye and head back to Minnesota.  We left Rick and Martha’s home and drove down to Clearwater Beach.  Kim and Katie took a quick walk on the beach while AJ and I visited the pharmacy.  

AJ struggled with extreme car sickness and we went out in search of medication.  It turned out to be a very good decision that we flew to Florida instead of traveling by car.  Especially now that it is apparent that he has a serious skin infection.  I doubt we would have made it home without visiting or staying in a strange hospital.

 Katie wanted to make a quick stop at Chick-fil-A. 
By then AJ was feeling better and he enjoyed some time in the play area.

 Thanks to many of you that donated funds to make our trip possible.  We all enjoyed the conference immensely.  AJ had the opportunity to experience Disney World and thanks to the Glombs we were able to experience another part of Florida.

 

Barbara and AJ  T

Home but sick.

We are back from the EB conference but AJ has another infection. Here is my quick update. No IV Vanco this time. Will try oral and wait for culture. Most likely MRSA again. Swelling around gtube split open skin on abdomen; likely internally also. Switched out to longer tube but damage is done. 


Thanks for your prayers. 


Barbara