Video Thursday - Self-Infusing A Port!

     Sorry, I didn't do a video last week...you sent so many upset emails...not! LOL  The kids had me running around like crazy last week, but it did bother me I didn't do a post so I apologize.

     This week I came across a video that I thought was amazing.  A little boy self-infusing his own PORT!  I've never thought about that when my oldest son had his port!  I've never even seen anyone do it before!  What strong will power a little boy has to have to self-infuse his own port!

Micah infusing posted by Mom4hemo

 

     Has your son tried this?  Are you willing to teach him how, after seeing this?



Encouraging Your Child With Health Issues- Video Thursday

     During the Hemophilia of South Carolina 2012 Education Symposium Family Weekend, we had a session presented by Lisa Greene, BS CCP - "Winning with Hemophilia; Raising Happy Healthier Kids".  Lisa is a mother of two children with cystic fibrosis.  She co-authored a book called,"Parenting Children With Health Issues". 

     Its funny, I never thought about seeking out information on how to parent my children because they have a health issue!  During the session, some of the things Lisa discussed hit home with the things we were dealing with; even with our teenage daughter who has asthma.  Since I didn't win the book in the raffle...dang... I went to her web page to get more information.  My son is getting older and getting back to learning how to self-infuse and we'll be retiring the helmet for gym/recess next year.. yikes.  I need for him to take more responsibility with taking care of himself.

Marques practicing 2 years ago (8)..should of never stopped!

What's Wrong With A "Mama's Boy"? - Video Thursday

     My husband is a proud "Mama's Boy".  When we started dating I knew early on that Sunday was his day to spend with his Mom.  I accepted that.  To be honest with you, it was one of the things that I liked the most.  I would rag on him a little bit about it, but it was a sexy thing.




   

Disney World 2011

  With my own sons, I hope they care about me the same way.  With both of them having hemophilia, I have experienced some of the most stressful times in my life worried about them.  I have learned from their birth to be intuitive to their feelings, so I could identify bleeds.  I had to comfort them, when at the same time, hold them down so strangers could stick them with needles.  I had to contain my own  feelings in order to stick them myself.  So, I have been there for them through everything.  They have come to depend on me.  They are and forever will be "Mama's Boys".  At the same time, I know as they get older, I have start putting the responsibility of their care on them such as self-infusion and ordering their own factor.

 

Every "Super Mom" Needs Her Own Theme Music

     That may sound corny, but it is very true.  Just like in the movies when the good guy is fighting the bad guy and he starts to win....the music changes....it's his theme music coming on and we know he has this fight in the bag.  I hear music in my head as well when I have to be "Super Mom" and muster up the strength to get things done instead of just crying.

     It's crazy though, I think I've always had theme songs playing in my head, but I was too busy to realize it.  When I was married to my first husband and had my daughter my theme song was Karyn White's, "I'm Not Your Super Women". 

     That song made me cry every time I heard it....because I felt what she was singing.  Needless to say, that marriage ended in divorce after 5 years.  I know what your thinking...how was that a good song?  The song made me realize I wasn't getting what I needed from the relationship and I deserved to.  Now fast forward to my second husband.  My theme song is a lot happier..can't really share it since I want to keep this post rated PG-13. 

     Just as Karyn White's song made me realize what I needed to do for me, other songs encourage me when I need to muster up my "Super Mom" strength to do what's best for my children. 

Hemophilia: The Royal Disease - Video Thursday

     I accidentally came upon a story on YouTube about the story of Hemophilia being passed down by the Royal family.  I remember when I was younger my Dad would mention this all the time.  I have read other stories about this in the Hemophilia information books, but nothing quite as interesting as this YouTube video.

     This video was posted by Tainted Blood created by Discovery.  It explains the historical effects of hemophilia on the Royal Family and how it actually changed the course of Royal history.  I found it very interesting to know how the genetic passing of hemophilia may have changed history (.....)