I'm A Recovering "Bad Consumer", Part II

    In Part 1, I confessed to not staying up with the NHF updates and not knowing about the Standard of Care to expect for my son.  I always depended on my Father for information.  After he died, so did the information.  My father was my resource and my first call if I thought my son had a bleed. 

Hemophilia of South Carolina Symposium meeting 2012

 

     My father was very involved in the Hemophilia Association of New Jersey, so I went to events with him, but never joined as a Mother of a son with hemophilia.  When we moved to SC, I attended my first family weekend Symposium with him and took my family.  Now that I reflect back, it was still as his daughter but not as my son's Mother.  I don't know if that makes sense, but he was my source of information and my guidance of how to care for my son.  So, when my father died...so did my information as well as my relationship with any hemophilia Chapter. 

I'm A Recovering Bad "Consumer" - Part 1

       At the Hemophilia of South Carolina 2012 Educational Symposium Family Weekend the fact hit me that I was a bad "Consumer" in the Hemophilia Community. First let me say, I've heard the term "Consumer" before, but I thought it just meant I was a consumer of blood products.  But the word "Consumer" means so much more!

     Michelle Rice, Director of Public Policy NHF, explained how to be a "Good Consumer". At the symposium we learned: A "Good Consumer" is educated and informed, not only about their bleeding disorder but about the rules and standards that apply to the various members of their care team (pharmaceutical companies, specialty pharmacies & medical professionals).

     Now, I was knowledgeable about the care I needed for my son: factor, supplies and doctor appointments.  That is all I thought I needed to know about!  

Encouraging Your Child With Health Issues- Video Thursday

     During the Hemophilia of South Carolina 2012 Education Symposium Family Weekend, we had a session presented by Lisa Greene, BS CCP - "Winning with Hemophilia; Raising Happy Healthier Kids".  Lisa is a mother of two children with cystic fibrosis.  She co-authored a book called,"Parenting Children With Health Issues". 

     Its funny, I never thought about seeking out information on how to parent my children because they have a health issue!  During the session, some of the things Lisa discussed hit home with the things we were dealing with; even with our teenage daughter who has asthma.  Since I didn't win the book in the raffle...dang... I went to her web page to get more information.  My son is getting older and getting back to learning how to self-infuse and we'll be retiring the helmet for gym/recess next year.. yikes.  I need for him to take more responsibility with taking care of himself.

Marques practicing 2 years ago (8)..should of never stopped!

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. 
    

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!