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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.
Treatment Breakthroughs
How great would it be to stop sticking your child with a needle three times a week? All the options that will one day be available is exciting to learn about. See link below to Winter 2012 Hemaware magazine article, "Treatment Breakthroughs", written by Sarah Aldridge.
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Playing Factor
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| Laithan & Layla 2 years old |
After I have given Laithan and Marques their factor, Laithan likes to keep the syringes so he can play. He loves going around and pushing the syringe in all of us, to "give us" our factor. I just happen to catch him playing "factor" with Layla and they were very serious. I know that Layla is confused as to why Laithan gets to get factor and she doesn't. I try to have her assist me, by getting band aids so she can feel apart of the process. However, as you can see from the picture, she still wants factor too.
I know that growing up with brothers with hemophilia, she will be a great Prophyholic Hemo Mom....hopefully, it will be a cure and she won't have to!
No more free factor!
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!
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!
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!
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