Bladder Exstrophy Picnic

We had a great time this weekend at the Bladder Exstrophy Picnic in Cockeysville, MD, just outside of Baltimore. The festivities took place at Oregon Ridge State Park. We were able to finally meet Dr. Gearhart in person and it was an honor. He is such a great person that truly has his patients best interests at heart. He has seen over 950 exstrophy patients since he started specializing in this area 24 years ago. There were at least 50 of his former and current patients that made it to the picnic and every single one of them would rush up to say hello to him. His personality and dedication to his field are very impressive and you can see why people come from all over the world to have him work on them.

The entire picnic was very informational and interesting. We were able to not only listen to doctors talk about exstrophy, we were also able to sit down in small groups to talk about every little detail that goes along with exstrophy. Simple questions that we have had over the last six weeks, we were able to talk to parents and patients that have gone through it and see how they dealt with them. Robbie was the youngest one there with exstrophy and the ages ranged all the way up to a patient 40 years old.

Being able to just talk to individual families and listen to what they have gone through really made us realize that, although it is going to be very difficult and a life-long ordeal, we can and will get through all this. The great thing we saw at the picnic were all the teenagers that you would have no idea had exstrophy. We were actually trying to figure out who had exstrophy and who didn't. It really seems to be a close-knit community and we are very fortunate to have found Dr. Gearhart and all his patients.

On Saturday after the last speaker Dr. Gearhart gave Robbie a quick examination to see how he looked in person. While he was looking at him he told us that the part that was exposed was not all bladder. On each side of the bladder were polyups, that are not cancerous and will just be removed when the bladder gets put back in. Since the exposed bladder isn't as big as we thought, the surgery may be delayed now so his bladder can get bigger. Instead of now going to our appointment on July 6th he wants us to call on Monday and see when we can get in this week. He just wants to sedate him for about 5 minutes so he can get a good look at his bladder and determine when he should operate on him. If the bladder is big enough he worked out his schedule to get him in on July 14th to close up the bladder. We are hoping that the bladder is big enough to help both Saree and I save some days of vacation before school starts.

We are now just asking for prayers that his bladder is big enough so he can get closed up sooner than later. I will updated the blog again tomorrow and let everyone know when we are going back to Baltimore this week. There will also be more pictures added of the cousins with Robbie.