Friday, July 5, 2013

2013 PMG awareness Convention

Last week we all packed up and headed to Jacksonville, FL for the first PMG awareness convention.  Annabelle did amazing on the flight down, all smiles and she played on the iPad and read books the entire way.

The convention was an amazing experience.  When we first got there we were not sure what to expect.  We headed down for registration and immediately were greeted with smiles and welcome words.  Everyone was so open and friendly, almost like we were all old friends.  We stayed for the meet & greet then dinner heading back to our room around 8:30 (late for Miss Annabelle since she didn't nap all day).

Our second & third day consisted mainly of seminars to learn more about things like drooling, feeding, PMG genetics, horse therapy, CMV, disability rights, and more!  There was so much great information I'm still sorting through it and remembering things we were told.  They even had a child watch room that Annabelle went in and played a few times to give us a break during seminars.

We were fortunate to get an appointment with a genetics doctor who is familiar with PMG at the convention.  After examining Annabelle he confidently told us she will walk soon, before her 3rd birthday!!  He's also confident she will live independently someday and could have children (depending on further genetics testing when more is known).  He also said from what we told him that he doesn't think she will have seizures, if she does it will probably be around puberty then she should grow out of them.  We were in tears with happiness after talking with him, it was the best news we could hope for.

Friday night we had another dinner with the group along with a very touching video of all our PMG kids including ones who are no longer with us.  I don't think there was a dry eye in the house after that!  We took Annabelle for a late night swim with some of our new friends, we were out till 9:30 that night and she went right to sleep when we got back to the room.

Saturday was an early morning, 7am in the lobby of the hotel to go to a horse farm for Equine Therapy.  Annabelle enjoyed riding but wasn't a big fan of standing still.  I don't really blame her, she was up high.  Her horses name was Mandy :-)  We are going to look into getting her enrolled at the Equine Center here in Rochester to hopefully improve her upper body strength and balance for walking.  In the afternoon we headed to the Jacksonville Zoo.  It was a really nice zoo and we had lots of fun!

We were supposed to travel home on Sunday but our flight was delayed so we would have missed our connection so we stayed an extra night at the Hilton Airport.  Annabelle enjoyed "swimming" in the jacuzzi tub after a long day.  We finally made it home Monday afternoon.  Before we took off we were grounded because of traffic in NY.  The pilot came on and said it was going to be about 20 minutes.  About 1 minute after the announcement I realized Annabelle pooped . . . and boy did it smell!!  I couldn't stop laughing, it was just one of those moments you had to laugh about.  I called the flight attendant and they allowed me to go to the back of the plane to change her quick.  We took off shortly after.  Our flight back was great, after we took off Annabelle sat on the floor and played for the 1 hour trip from Baltimore to Buffalo.  She was so happy and made lots of friends on all the flights with that beautiful smile and cute wave.

It was such a life changing trip, we met so many wonderful people, learned so much, and got information that gave us more hope than we ever had for Miss Annabelle's future.  I wish we all lived closer but thanks to Facebook & email we will be able to keep in touch and see all the wonderful things our PMG kids are doing!

Speaking of wonderful things, after we came back Annabelle crawled up the stairs from the living room to dining room.  It was so great to see her getting so strong and confident!  I hope to have many new updates of the amazing new things she is doing all summer.

Sorry the pics are not all in order, some are from my camera and some from my phone.

Brian showing Annabelle the view from our room

Down on the River Walk
Playing in our room
Our new PMG friends :)

Cake donated by local bakery
"Uncle" Glenn, the oldest known survivor of PMG - 55
Getting ready to swim
Ready to ride!

Jacksonville zoo - touching experience

Annabelle, Bubba and their daddies

Moms & kids watching the penguins swim
Fun on the playground

Two of Annabelle's new friends - Sean & Elijah
Some of the PMG moms
Last day, playing after breakfast

Annabelle & Charlie, he came all the way from Australia with his mum 
Annabelle and sweet Brooklyn 

Going over the bridge to Jacksonville Landing

Annabelle all ready to go on our trip
On our way to Florida

Our new PMG bracelets 

Annabelle and Sean on the way to the zoo

Ready to get up!
TruSpeed put all the kids names on the top of their car.  Annabelle is on the right :)  They raced at Watkins Glenn last week, unfortunately we were in FL so we missed the race.

Sleeping at the airport, such a sweet little girl!
Sitting on the floor of the plane playing, happy as can be

Swimming in the jacuzzi


Annabelle said...
This comment has been removed by the author.
Catrina said...

What a wonderful post! I really love the pics. I'm looking them ony phone at the moment, but if one of the pics of her on the horse is clear enough, I hope you will give us permission to use it on our website. Annabelle is too cute for words!

I'm so happy you all made it for the convention and that it was a great experience for you. We are so happy to have had the opportunity to meet you all!

Hugs :)