To my surprise, I called to order my son's factor from the South Carolina Department of Health and Environmental Control (SCDHEC), as I have been doing for over the past year, and they tell me I can not get their factor from them anymore. I was told that I should be able to get factor from my insurance company and this was discovered when they went to submit the bill for the factor. This is news to me. I tried to get factor from my insurance company pharmacy and no one knew what hemophilia was or who to send me to to discuss what I needed.
To my luck and surprise this time I was only transferred around twice and a representative from CVS Caremark special pharmacy department was able to help me with no problem. After two weeks, I was approved and the factor was delivered and I also received a visit from a CVS Caremark Customer Relations representative.
I don't know whether to be relieved or disappointed in myself for not getting through to someone at Caremark the first time. I was fortunate enough to get both my sons set up on the free factor program and SCDHEC was great to deal with. I now have a $50 co-pay for each of my sons when I order factor, but all supplies are included. I know we are still fortunate because some people pay more than this. After further research, I noticed CVS Caremark advertisement on a Hemophilia of NC newsletter with the contact names and phone numbers of the individuals that are helping me now. Too bad I didn't read this newsletter before. I consider myself lucky that this transition was easy!
The random thoughts of a Mother dedicated to taking care of her sons with hemophilia, staying involved in the hemophilia community and continuing to learn about hemophilia.
Happy Father's Day!
He used this talent in the hemophilia community as an Outreach Specialist for The New Jersey Hemophilia Association of New Jersey. His goal as an Outreach specialist was to educate, enlighten and empower the total hemophilia community, regardless of culture, socioeconomic, or gender difference. He wanted to make sure the next generation of hemophilia patients did not go through the pain and suffering that his generation went through.
I was blessed, as a mother of a child with hemophilia, to have him as a reference and to make sure I was connected to the right people and information to care for my son. I know he would enjoy seeing his Grandson's running and playing pain free, but I know he is watching!
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.
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!
Finding Love Being a Hemophiliac?
Finding love being a hemophiliac seems stupid when I write it, because we wouldn't have so many hemophiliacs if no one loved them, right? My son, Marques (9), is starting to talk to me more about liking girls...every year now he seems to find a girl in his class he has a crush on. For the first time though, I started worrying about some girl saying she doesn't like him because he has hemophilia and wears a helmet to play.
I expect it is normal for all boys to get turned down by girls for one reason or another...I use to turn guys down for being short...until I met my husband L.O.L. When I was starting to date and felt the relationship might be serious, I would tell the guy about the possibility of me having a hemophiliac child...I first did this at 17 and the way I was crying probably scared the hell out of him. I always thought me having the possibility of having a hemophiliac son would be a deal breaker. I don't want to raise my own kids to think that way. I want my daughters to be confident that any one worthy of marrying them would stand by them to raise a family regardless what God put before them. (I pray there is a cure for hemophilia before they have kids) I hope my sons choose their spouse the same way.
So I guess I have to be strong for Marques when he comes home that first time and says, "She doesn't like me because I have hemophilia". I need to be ready for what I am going to say to him so that he doesn't let the fact that he has hemophilia hinder him from being the "Mac Daddy" he thinks he is.
I expect it is normal for all boys to get turned down by girls for one reason or another...I use to turn guys down for being short...until I met my husband L.O.L. When I was starting to date and felt the relationship might be serious, I would tell the guy about the possibility of me having a hemophiliac child...I first did this at 17 and the way I was crying probably scared the hell out of him. I always thought me having the possibility of having a hemophiliac son would be a deal breaker. I don't want to raise my own kids to think that way. I want my daughters to be confident that any one worthy of marrying them would stand by them to raise a family regardless what God put before them. (I pray there is a cure for hemophilia before they have kids) I hope my sons choose their spouse the same way.
So I guess I have to be strong for Marques when he comes home that first time and says, "She doesn't like me because I have hemophilia". I need to be ready for what I am going to say to him so that he doesn't let the fact that he has hemophilia hinder him from being the "Mac Daddy" he thinks he is.
Raising a Want To Be Athlete
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?
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| 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.
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?
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