No School Missed Due To Hemophilia!

     Well, in less than 30 days the kids will be back in school.  This summer went by so quick; yet not quick enough.  I am starting to schedule the kids doctor appointments so they can get their factor levels checked.  I think Marques has not been to the Hemophilia Dr. in over 6 months and Laithan has not been to the Dr.'s since January.  I'm hoping that is a good thing.

     One thing I never mentioned was, Marques made it through the entire year only missing one day of school.  The one day was maybe 2 weeks before school ended, he caught a bug.  He was so disappointed because he really wanted the perfect attendance award.  I had to let him know he already received his award by having a bleed free school year!  Yes, the nurse did call a few times for falls, but nothing major that required additional factor. 

     This is his first year not missing school due to his hemophilia.  My father would be proud because he use to tell me about all the time he had to miss from school.  I pray that next year we have the same luck.  I'm thinking about letting him not bring his helmet to school to wear to gym and recess, but as I write this....I'm getting nervous!

     How are your kids doing with attendance at school?  Is hemophilia becoming less of a reason for being absent?

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

Laithan & Layla 2 years old



     Everyday, I am surprised about how much the twins are learning.  Kids watch everything we do as parents and they imitate us in ways we sometimes ignore. 

    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!