Random Thought: I Love October!

     I'm sitting outside today and the wind is blowing softly, the sun is shining warm and the leaves are making beautiful music as they begin to turn colors.  Now I live in SC, so everybody's October is not like mine but I hope you have a day in the season like this. 

     Right now I want to go for a ride in my car...sure wish I had a convertible so I could let the top down...and take a drive on the Blue Ridge Parkway through the Mountains of NC; so I can really see the true beauty of this time of year. 



Picture shared on Blue Ridge Parkway Facebook Page

     It's kind of crazy when you think about how hard the leaves have worked this summer to provide us shade and now they give us the most beautiful natural show before they fall from their home.  While I write this, I begin to wonder, "Why do leaves change color?"  Per the USDA Forest Service, "As days grow shorter, and nights grow longer and cooler, biochemical processes in the leaf begin to paint the landscape with Nature's autumn palette."

     So, as I sit here enjoying the breeze and the beautiful music of the leaves, I realize it's like the last song you hear at the end of a great party to let you know it's coming to an end. 

I hope you enjoyed the warm weather, get your last outdoor activities done because it's coming to an end!  

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?

Needle Free Vaccinations!

     Keeping Laithan up to date on his vaccinations was one of the rough times when caring for a child with hemophilia.  You have to coordinate him getting factor from the hematologist around  the same time he has to receive his vaccinations shots from the pediatrician.  I know some Moms go to an Hemophilia Treatment Center who take care of both, but I didn't.

     A child with hemophilia has to receive his vaccinations shots subcutaneously, under the skin instead of in the muscle, like regular patients to avoid a muscle bleed.  You have to hold pressure and ice on the spot for at least 5-10 minutes after the needle stick, for extra precaution.  It is so hard trying to hold ice packs on those little thighs and console an infant crying hysterically at the same time.  Most infants with hemophilia are not on a regular schedule of factor yet because of the difficulty in finding a good vein to infuse the factor, so most likely he just survived that ordeal at the hematologist.  

   This Ted Talk video introduces a needless way to get a vaccination  that I'm sure would be a welcomed technology in the hemophilia community.  It's called "Nanopatch", developed by Professor Mark Kendall, Bio-engineer and delivers the vaccine through the skin.  Per his discussion, its more effective than our current system.  Sign me up for anything needless and less stress and care for a child with hemophilia!

Professor Mark Kendall uses the device he designed and patented to attach a Nanopatch to a child’s forearm. Brisbane, Australia, 2012. Photo: ©Rolex Awards/Julian Kingma.

Hemophilia Shout Out during AFC Divisional Playoffs!

      The hemophilia community is such a small community compared to cancer or sickle cell disease, so I just jump for joy when I come across a hemophilia shout out to help spread awareness.

You Could Kill Him

    Could you imagine having a child you could not bear hug?!  That's like having corn flakes but no milk, pizza with no cheese or music without rhythm! I think I bear hug my children several times a day!