30 Day Thankful Challenge: Thankful for "Factor Time" during the maturing age!

     So on the Prophyholic Facebook page, I’m doing the 30 days of Thankfulness Challenge and applying it to being a Prophyholic Hemophilia Mom.  I’m nervous I won’t make it!   I’m trying hard not to miss a day or undervalue the experience with easy or repetitive things to be thankful for.

     On this journey I had an Oprah, “Aha moment”!   I am thankful for the connection time I had while giving my son his factor to treat his hemophilia.  I wanted to share this in a more detail blog post because I want every Mom to realize that “Factor Time” is a great experience and journey.

     For most Hemophilia Moms, starting home infusion for prophy is rough on you!  Most likely your child was an infant/toddler and you have to tell yourself that the pain of sticking him with this needle is less pain than a joint bleed.  So, for years you go through this several times a week, filled with good days of cooperation and bad days of him fighting you tooth and nail.  Eventually though, through my experience, as your child gets older and mature they realize that "factor time" is a must and you have his full cooperation and help.

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?



Factor Strike...Might Be Over!

     One reason why, I love writing this blog on hemophilia because it gives me a chance to THINK about what I do instead of just doing it. 

     After writing about how Laithan was still on Factor Strike and describing how he was okay up to the point it was time to put in the needle... it hit me.  I need to change up the situation because he is a creature of habit and order.  My big idea was to remove DADDY!

     Now, the first time I removed Daddy, it took me about a half hour just to get Laithan to sit down. I did his factor early in the day, before Daddy came home, but Marques was home from school.  I did my normal yell of, "factor time".  I asked Laithan who he wanted to go first, of course he wanted to go first.  I had everything out and he was about to sit down and Laithan said..."I need Daddy lap".  I told him, "We don't need Daddy anymore".  "Your a big boy", I continued telling him this, but he wasn't going for it.  Then I threatened to do Marques factor first, which made him more upset.  

     I was just about to try a lollipop (the same one's I'm trying to get him and his twin sister to potty train with...which isn't working)  or some numbing cream (never used on him or Marques) because I was getting desperate and did not want to waste the factor.  Just when I was about to give up, I asked him one more time to help me...he asked for gloves...I put the gloves on him...and he held the syringe while I was put the needle in his port.  He stayed so still.. no fighting, no pulling away or trying to stop me..I just stayed quiet until we were done.  Like magic, he went back to how he was a few months ago.  After I pulled the needle out his port, I yelled and gave him big high five and hug!

     The next factor day...Daddy was home.  I ignored the fact that Daddy was home and tried to repeat the same pattern.  At first, he said "I need Daddy lap".  I told him,  "No, Your a big boy now and a big helper".  He repeated what I said, put on his gloves and we did it with no problem!

Laithan "drumming" up business at garage sale

     How do you spell R-E-L-I-E-F!  Fighting with Laithan had become such a burden and sometimes factor day got skipped if my husband had to work late.  It's amazing how he use to fight for his life and now just sits there calmly.  I'm so glad I have boxes of extra gloves and hopefully we won't run out until he's tired of wearing them!

Still on Factor Strike

  I blogged two months ago about my son Laithan (2) on Factor strike.  There has been no changes....well maybe a little.  I told you how he use to be so great sitting there like a champ in a chair by himself while I gave him factor.  Now my husband has to hold him down.

     He has improved a little.  When he first started his factor strike he would run to his room or sit at the top of the steps, while I was getting things ready.  Now, when I say, "factor time" he runs to get his supplies.  At the age of two, he already knows what to get and how to use it.  My mother was so impressed this week when he brought her into the pantry and explained everything.  She suggested (in her motherly way) I need to record it...so I will and I'll share it with you.  You would think that he was a pro taking his factor.  He still insist on sitting on my husbands lap, he lets me wipe his port area off with alcohol and then ....as the needle goes up....he tries to kick or swipe it away and the hold down begins.

Raising a Want To Be Athlete



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.

    
     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?