My Hemophilia Awareness Month 2014

      Hemophilia Awareness Month of 2014 I have become one of them!  I never imagined I would be when I had my first son with hemophilia.  When I dated guys I felt the need to warn them that they never would be as well, if we were to have a son.  But now for the first time I am a “Sports Mom” or “B-Ball Mom”! 

     Now, some of you may have never had this thought or may have been a "Sports Mom" or parent since day one.  Don’t get me wrong, I did allow my son to play sports at recess and gym class.  I just never signed him up for a team sport before.  My Dad, who had hemophilia would warn me about the target joint bleeds and joint damage that could result from playing sports.  He would even have me grab his knee while he bent it and I could feel the clicking and roughness of the knee as he moved it back and forth.  I grew up watching him deal with chronic daily pain where just getting up to go to the bathroom was a battle.  Thinking about it now I get chills, so I was “scared straight”. 

     Also, 11 years ago they were not pushing kids with hemophilia to play sports…stay active…but not team sports.  The only sports I “knew” was Football, Baseball and Basketball and they were all rated 2.5 or higher on the National Hemophilia Sports Rating by Activity Chart, so being a “Sports Mom” was not something I imagined in my future.   

     So, this Hemophilia Awareness Month has been eye opening for me.  I am aware that my father’s point of view about having hemophilia and playing sports was based on him not having factor available at home or being raised on prophy and wanting to protect his grandsons from the pain he experienced daily.  I am aware that yes playing sports we are taking a risk, but if I keep them on their prophy regimen (like the prophyholic I am) and plan it around practice and games I can reduce that risk.  I am aware that I have to teach my sons that we are taking a risk of playing an organized sport, but they have to learn to listen to their body for warning signs of a bleed, which is hard because you don’t know the “normal” aches from a beginning of a bleed. 

     My son has told me he is paranoid about getting a bleed when he's playing basketball so he tries not to play as hard or get too rough.  It’s hard to tell him he shouldn’t be scared of a bleed when I’m on the sidelines just as afraid.  I’m hoping over time that fear will fade and praying at the same time he never has a joint bleed or develops a target joint bleed.  I am aware that they are having fun and that’s what living your life is about.

     It’s only been two weeks since I’ve become a “Sports Mom” and it’s exciting!  Laithan is doing great at T-ball.  He throws the ball so good the other parents joked, “We need to see his birth certificate to confirm he’s only 4!”  His twin sister, Layla, is getting over her shyness a little and slapping hands with the other parents.  The both of them are really enjoying learning how to play T-ball and being out with other kids. 

    

     Marques is loving being on a Basketball team.  He wanted to play because his friends were playing, but they didn’t get on the same team so I thought he would lose interest.  The opposite has happened.  He can’t wait to get to practice.  It’s almost like letting a caged bird out for the first time.  He said to me the next morning after the first practice, “Maybe I could be the first hemophilia NBA player?!”  I just said, “Maybe”. 

     I even see a new light in my husband’s eye watching his boys play a team sport.  He even decided to become the Assistant Coach for Marques Basketball Team.  

     This is a new beginning for us.  I’m ready to invest in some “B-Ball Mom” t-shirts!  I know I had fun shopping for all the equipment and sneakers.  I tried not to go too crazy getting the twins T-ball sports bags, but I may have to splurge in getting them baseball shirts with their names.  I know….. the newness will wear off…. and the running around trying to get everyone to practices and giving up my quiet Saturdays because of games will be taxing, but that’s the life of a “Sports Mom”, lol!

 

     Hopefully, you won't get too tired of me sharing my pictures on Prophyholic Facebook page!

Have you allowed your child to play a Team Sport rated 2.00 or higher activity rating?  Has the fear of your child getting hurt diminished?

Raising a Want To Be Athlete



Marques playing football at Boy Scout camping trip

     I know I am like every Mother that thinks about her son playing sports.  Even though my boys have severe hemophilia A, I still brought them the little toy basketballs and footballs.  Yes, at the time it made me sad thinking they could never play for their school sports team or recreational teams. 

     Of course I felt guilty because their fathers (twice married) love sports and I know they would not have imagined having a son that could not play.  But still hemophilia does not stop my son Marques (9) from thinking he is an athlete.  I know he is at school during lunch playing football with his friends, which is why I still make him wear a helmet.  I remember (laughing), when he was about 6 I went to pick him up from his after school program and he was in the playground playing football and when he saw me he was trying to act like he was just watching...whatever.  We tried to get him involved in Boy Scouts, so he does have some outlet, but even at Boy Scouts they play sports at camp or sometimes at the meetings.  What can a Prophyholic Hemo Mom do but make sure he is treated and ready to give an extra dose if needed.  All the fathers make comments about how he should play football and we have to give the speech....he has hemophilia a bleeding disorder...yada yada.

    
     But now, I don't know if the old rules apply anymore about hemophilia and sports.  Of course there are different levels of sports you should and should not play.  I don't think we will see a famous hemophiliac playing football...but maybe basketball.  I read an article in Hemaware, a bleeding disorder magazine, that studies were done and proved that high impact sports like basketball did not increase the number of bleeds versus lower impact sports for boys on prophy treatment.  All these studies are so new and contradict everything put in my mine by my own father and information I was given when Marques was first born. 

    
     But times change, medicine gets better and more available and just maybe my son can play for his school basketball team!  I did check with his Hemophilia doctor and she just said we would look at changing his prophy days to practice days and go from there.  I will be cheering from the stands with my ice bags ready to go!

     Does your son play sports?  Why or Why not?

Insurance Not Making It Affordable!!!

     For the last 7 years I have had it easy being a Prophyholic HemoMom.  My ex-husband had great insurance!  When it was time for Marques (8) to get his port, I didn't think twice about it, getting his factor or at the time having nurses come out to the house....no problem, we paid nothing out of pocket.  I knew not having "good" insurance was a problem for some hemophiliacs like my Dad, so I was grateful for the insurance my ex-husband had. 

     When I had Laithan and Layla (1) with my current husband, he did not have any insurance.  He was working a temp to perm job at the time, so we were hoping he would get hired before I had the twins.  Unfortunately, that didn't happen so I tried applying for Medicaid but was denied.  Laithan's first few hematology appointments I still owe for today....Luckily, Baxter had a free sample program so we were able to get 6 doses of factor free.  I just prayed we wouldn't need them or it would last us until we had insurance.
    
     After some guidance from the Hematologist Clinic Social Worker, I was able to find a program in SC called the Child Rehabilitative Services (CRS).  They provide free blood products and supplies to children with Hemophilia.  When we were approved for that program, I was jumping for joy and proud of myself for researching, driving down to the health office, completing the paperwork and getting approved.  Finally, when the twins were 7 months old my husband was hired permanently and we finally had insurance.  The insurance now paid for the Dr. appointments, but I was still getting the factor through CRS. 
    
     After thinking, "okay I have this all under control!" My ex-husband has decided to move closer, which means that Marques no longer has the "good" insurance.  My ex-husband job has a co-pay for the factor which will cost me about $200 month (so funny, UPS just rung the door bell to deliver it).  Still, I know for some families they pay more than $200 month, but since I am now a stay-at-home Mom I don't know how to stick this $200 in our budget.  However, I do know I can get his factor for free like Laithans.  I will be going down to my County's CRS and adding him onto the application.  I also now have a co-pay of  $65 to see the hematologist verses the $10 and $130 emergency room co-pay verses $50.
    
     Thank you to all the hemophilia health advocates, hemophilia associations and families that fight for these state programs!!  I am now dealing with the true realities of how expensive being a Prophyholic HemoMom really is.

Prophyholic Hemo Mom

     No, the term prophyholic does not exist....yet.  I just made it up as I began to think about what I wanted this blog to be about.  I did not want to base this blog just on problems I encounter raising hemophiliac son's because I would not have enough content (knock on wood and praise the lord).  That led me to think about how much easier things are because both of my son's are now being treated prophylaxis.  I guess I need to define a couple of things before I continue:

    Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
    Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
    
     I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old.  Marques has been on prophy since he was 16 mnths old.   He fell out of my bed (what a heart break that was for me...I'll discuss in another post).  Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.

     So, three times a week I get my assembly line together so I can factor them up.  Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health.  I've seen the pain my Dad experienced from target joint bleeds and how it crippled him.  I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!

 

Marques listening in on Laithan and Layla