Goals for attending HSC 2012 Educational Symposium and Family Weekend

     I should be packing for this weekend, but I also need to write this post because I’m packing to attend South Carolina Annual Educational Symposium and Family Weekend.  It's like a local/mini version of NHF annual meeting held in Mrytle Beach, SC.  This year went by so fast…last year’s meeting is still fresh in my head. 

2011 Educationl Symposium pictures

     I wanted to make sure I wrote a post before I went to hold myself accountable for a few goals I wanted to accomplish this weekend.  I’m already disappointed that this is the only hemophilia event I’ve been able to attend this year.  I almost made the decision to back out of going to this one because Maree’ (oldest daughter) is competing in the State Middle School Mock Trial Competition this weekend.  I’m double booked, but we are going to attend the first day of the competition Friday then head to the Symposium.  Thank goodness the competition is on the way and will break up our 4 hour drive.  My daughter knows how important it is for us to attend the meeting and she is also disappointed she's will miss out on spending time with friends she made last year (Thank goodness for Facebook!)

     Like my daughter was able to do last year, I want to come away with people I can continue a relationship with.  It would be great to stay in contact and “know” (not just a Facebook or Twitter know) someone local.  So, that is goal number one. 

     Goal number two is to continue to learn something new or learn another best practice from another family.  In the same respect maybe I can offer a new family a best practice.

     Goal number three. Have fun.  We are at the beach for the weekend…this is an easy goal!  We are in meetings all day, but during the breaks I take a moment to go outside and appreciate where I am.  Hopefully, the twins will sit on Santa’s lap this year at the Holiday Dinner.

     I plan on Tweeting from the meeting this weekend to share our adventure and pictures!  You can follow on facebook or twitter…wish me luck!

Memories of my Dad at NHF Annual Meetings

My Dad class Halloween picture

     My Father Richard O. Johnson, Sr. was what people would now call an "Old School Hemo".  When he was younger dealing with hemophilia bleeds he didn't have factor at home to use as needed.  My Grandmother (as my Dad would tell it...)had to sometimes carry him to the hospital on her back because she didn't have money for the bus or cab.  When he was growing up they put him in a school for kids with Special Needs because he had hemophilia.  Through it all he still lived his life as much as he could....in pain from severe joint damage in both knees. 

     I think...when I was about 13 years old he had both knees replaced.  Getting his knees replaced made him more mobile.  He chose to use his new mobility working with The New Jersey Hemophilia Association and The Delaware Valley Chapter of NHF.  He was also on a committee with NHF that would choose one family to sponsor at the yearly NHF meeting.  My Dad enjoyed attending the NHF annual meetings.  It's funny, one of the earliest NHF meetings I remember my Dad attending was in Orlando.  I guess that is why them having the 64th Annual NHF Meeting in Orlando is bringing up so many memories.

Re-organzing Factor Supplies

          So a few weeks ago, I shared with you a picture of how I stored my factor supplies and how I had to change everything.  I couldn't keep the Twins out of the Pantry.  Apparently, you can see from the picture below, they had their own idea of where to put away the factor supplies. 

 

 

     In order to prepare for my new shipment of supplies this month, Mommy needed to take control.  We have a closet near the garage door that I thought would make a great new home for the supplies.  We keep the factor in the fridge in the garage, so you have to go past this closet anyway.  The closet was being used to store my Husband items for Boy Scouts, he's a Leader.  Also, in the closet were items that someone (which would only be me), needed to find a home for. 

 

     Anyway, with a little work I was able to make the factor supplies a new home.

 

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.