HSC Educational Symposium and Family Weekend Review

     Let me just start of by saying I had a good weekend!  The weather was foggy Saturday, which was okay since we were in meetings all day, but Sunday morning made up for it.

     My family has made a commitment to attend this meeting every year so we can "check in" with the Hemophilia community.  This year, I have to say it was a good check up.

     This year theme was "Today and Beyond".  The Weekend Agenda was full of education sessions for parents as well as the children followed by a Holiday Buffet Dinner and Christmas Celebration.  There were several good sessions that I will break up into a few blog post.

     One of Saturday Morning sessions presented by Michelle Rice, Director of Public Policy of NHF who is responsible for coordinating NHF advocacy efforts at the state and federal levels, provided everyone with a Personal Health Care Insurance Toolkit created by NHF to help you decide which insurance plan is best for your family.  Of course it's the end of the year and time for insurance changes.  My husband always just picks the one that seems to be the best choice to take care of our hemophilia needs.    The toolkit walks you through a worksheet you complete based on information from your own insurance plan.  You can compare dollar for dollar which plan is best for you.  I'm almost scared to check to make sure we did pick the right plan. 

    
     If you were following me on Twitter this weekend at @Prophyholic, you know I had an enlightened moment about the importance of supporting your Chapter, which came up during this session.  Now, don't get me wrong.  I knew it was important to join a Chapter, but I did not understand the correlation between being involved and showing up to events with how much funding your Chapter can receive from drug manufactures and insurance companies to donate to the Chapter.  I guess my ignorance came from always seeing pharmacy providers at events when I attended with my Father and just thought they were part of the package.  Back then, pharmacy providers paid for trips, provided helmets and everything else to keep you as a customer. 
    

Goals for attending HSC 2012 Educational Symposium and Family Weekend

     I should be packing for this weekend, but I also need to write this post because I’m packing to attend South Carolina Annual Educational Symposium and Family Weekend.  It's like a local/mini version of NHF annual meeting held in Mrytle Beach, SC.  This year went by so fast…last year’s meeting is still fresh in my head. 

2011 Educationl Symposium pictures

     I wanted to make sure I wrote a post before I went to hold myself accountable for a few goals I wanted to accomplish this weekend.  I’m already disappointed that this is the only hemophilia event I’ve been able to attend this year.  I almost made the decision to back out of going to this one because Maree’ (oldest daughter) is competing in the State Middle School Mock Trial Competition this weekend.  I’m double booked, but we are going to attend the first day of the competition Friday then head to the Symposium.  Thank goodness the competition is on the way and will break up our 4 hour drive.  My daughter knows how important it is for us to attend the meeting and she is also disappointed she's will miss out on spending time with friends she made last year (Thank goodness for Facebook!)

     Like my daughter was able to do last year, I want to come away with people I can continue a relationship with.  It would be great to stay in contact and “know” (not just a Facebook or Twitter know) someone local.  So, that is goal number one. 

     Goal number two is to continue to learn something new or learn another best practice from another family.  In the same respect maybe I can offer a new family a best practice.

     Goal number three. Have fun.  We are at the beach for the weekend…this is an easy goal!  We are in meetings all day, but during the breaks I take a moment to go outside and appreciate where I am.  Hopefully, the twins will sit on Santa’s lap this year at the Holiday Dinner.

     I plan on Tweeting from the meeting this weekend to share our adventure and pictures!  You can follow on facebook or twitter…wish me luck!

Where Have I Been?!

     I started this blog thinking I would write on it more often!  What happened I guess I could always blame it on the twins running around all day, keeping up with housework or any of the other million things that distracts us through out the day.  I have to blame it on good old fashion laziness.  I need to get my butt in gear earlier in the day or during nap time to make sure I stay up with this blog.  It does feel good to write and let things out....yes I'm having those feelings right now!! 

     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!