I have to pat myself and my family on the back because we did attend The Hemophilia of SC Educational Symposium Family Weekend/ Christmas Party in December. Anytime you can get to the beach you have no choice but to enjoy yourself. We did meet a couple of families we had a chance to talk to during the breakout sessions. I met one family who just found out their 8 month old has hemophilia and they are learning how to navigate health care being self employed. I gave them some information for getting free factor from the state, but I wish we would of exchanged numbers. I could of used a friend that had a son with hemophilia as I was learning how to care for my son.
I like the Symposium because they provide daycare/activities for all the kids. The twins (1) went to a daycare with their own age group. That was the first time they were left with a stranger. Laithan cried himself to sleep and Layla played quietly but cautiously. Marques (9) met brothers with hemophilia and got to swim around in the resort pools. MaRee (13) was able to make friends that she is still keeping in touch with on facebook. I look forward to us going back next year.
One of the new things we learned about was Arteriovenous Fistula, which is the veins in the arm can be put together to make a bigger vein that is always ready to access. This is a procedure that can be done in lieu of getting a port put in.
I never had this option presented to me for either one of my sons instead of the port. Luckily, we have had great results with our port but I would definitely take this option if Laithan runs into trouble since he only had his port a year. I had a chance to feel the vein in a child that had it done and you can feel the blood running through the vein and he was not bothered by the bigger vein at all.
We are definitely going back next year and not just only for the beach!