NHF Washington Days - Video Thursday

    

    
     The National Hemophilia Foundation annual Washington Days is planned for Wednesday, February 27 - March 1 to continue to advocate for the bleeding disorder community.  I've never attended Washington Days and wanted to this year, but financially I can't.  However, I am going to participate for the first time in my local chapter State advocacy day next month!  I'm registering for that today and will take my oldest son Marques, so he can begin to understand what goes into him having access to medicine.

     Obama's health reform has really put our community in a better position with insurance companies to continue to provide our son's with a "normal" life.  I watched a hemophilia video before that reported that it could cost as much as $10,000,000 for a lifetime of factor since hemophiliacs are living longer and need to take factor at least 3x per week!  Hence the term, "Million Dollar Babies", my Dad would use.  I know insurance companies will continue to fight that and Medicare will not want to keep covering that cost in their budget. 

Being A "Normal" Boy





Swimming Safe Rating

    As a Prophyholic Hemo Mom, I consider myself fortunate because I know my Father's generation did not have access to factor in the home for major or minor bleeds or prophylaxis treatment.  I feel like with my boys being on Prophy, they have a "normal" life like other boys.  Until..., Marques (9..for another 5 days) comes in AGAIN and tells me he wants to play a sport like his friends. 

     Unfortunately, my son's sport of choice is football which is a huge No, No number 3 on the National Hemophilia Foundation Sports Ratings by Activity Chart.  Recent studies have also shown that football is dangerous for all boys, regardless if they have hemophilia, due to head injuries.   With the National Center of Sports Safety reporting that 23% of boys ages 5-14 playing football get injured, I think football with be on our family No, No list as well.

     With football taken off the table, Marques next choice is basketball.  Basketball is also high on the ratings list as a Moderate Dangerous 2.5!  I did talk to his Dr. about this prior to the summer and she said we could work his treatments around his practice and games.  I really haven't been aggressive in finding a place for him to play, but now he is pushing me. 

     I know that I am scared for him to experience a painful bleed in his joints from an injury.  He has been on prophy treatment since he was about 1 1/2 years old, so he does not know what  a bad bleed feels like.  I remember seeing my father hold bags of ice on his knees or elbows when he had a major bleed in his joints.  He had to get two knee replacements because his joints were destroyed and it was painful for him to walk.  Yes, I know we are a long way from that...but I still worry if Marques will develop a target joint bleed from a major fall on the court.  I have to come to terms that getting involved with a sport, I am opening him up to injury.

     He has joined his after school Archery group, which is a Safe number 1 on the ratings chart.  I think he joined so he could shoot something, since I won't buy him a Nerf gun.  I know Archery is not going to be enough for an active boy like him.  He is also getting bored with Boy Scouts, so we just made a deal to do it one more year.

Horseback Riding Moderate-Dangerious Rating

     I know that times have changed in the hemophilia community and there are many precautions that I will have to take so he can have a "normal" boyhood.  In a few years, Marques will be in middle school and he will want to play on the schools Basketball Team.  Who knows, maybe he will be the Star Player and I will be his biggest Cheerleader!

     Does your son play sports?  If so, were you worried? ...Or, are you worried for you son to play a sport?

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!

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?

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