Pulmonary Hypertension Conference 2012

Parker and I spent this past weekend in Orlando, Florida attending the 10th International Pulmonary Hypertension Conference. It was a whirlwind trip that included meeting many new friends and learning more about Pulmonary Hypertension. 

We stayed at the Renaissance Orlando at SeaWorld, which is across the street from SeaWorld.

While I attended the sessions during the day, Parker enjoyed participating in the Kids's Room where he played games, did crafts and made new friends, including several kids who have PH. It was so good for Parker to meet other kids with pumps and/or oxygen just like him.

It was amazing for me to be able to speak face to face with other Moms and Dads and discuss our children and PH. We shared stories, advice, and tips with each other.  We also met doctors and nurses from all over the country who specialize in PH. They led several sessions where we were able to ask questions about all things related to our kids and PH.

On Saturday night, Parker was able to participate in the PHA Fashion Show. This is a tradition of the conference where attendees show how they wear their IV pumps and/or oxygen and make a fashion statement at the same time. I think Parker stole the show as he showed off his Spider-man backpack and then spontaneously shared some Spider-man moves with the crowd.

As many of you know, Parker is a major Spider-man fan, so it seemed very appropriate for him to make a fashion statement wearing his Spider-man backpack, which he loves and wears all the time.

Isn't this an awesome "Spidey" pose?!?

Parker and I truly enjoyed the PH Conference and we are so grateful for the scholarship that we received so that we could attend. It was a wonderful opportunity for both of us.

The most important thing that I took away from the conference was renewed HOPE. The first day of the Conference I remember feeling a major surge of hope when I saw a young adult in their twenties who had lived with PH since they were a young child. Over the next few days, I discovered that there were several young adults there who had lived with PH for 15 or more years and that was amazing to me. It brought tears to my eyes every time because I could only think of my sweet Parker and his chance at a long, fulfilling, active life. When Parker was diagnosed 4 years ago, the prognosis we were given was very grim. So, seeing these young adults doing so well and living so long with this condition filled me up with hope for Parker and all children who have PH.