Most Read Post of 2012

    This year, I really started to open up on this blog and tried to stay consistent with post.  I believe people are reading this blog, even though I don't have a lot of comments.  Either way, it is great to have an outlet for the things that go on in my head.  I know my husband is thankful I am not keeping him up with my ramblings.  I thank you for reading this blog.  I hope it gives you a window into how someone else is dealing with hemophilia in their home. 

     My goals for this blog in 2013 is to improve my post by writing more clearly ( I read some older post and I don't know what the hell I was trying to say....sorry) and keep sharing more experiences beyond Hemophilia.  If you have any suggestions, please let me know!

Happy New Year!

  The most read post for 2012 was:

10 Year Hemo Mom Award

 

 

 

Teaching The Gift of Giving

     I knew from the moment Marques, my 10 year old son, asked me,  "What day is Christmas on?", I wanted to do something different this year for Christmas.  Marques and MaRee' (13) have been very spoiled, never wondering if they would have gifts under the tree.  Besides something they made in class, they never thought about putting a gift under the tree for someone else.  I can only blame myself and work on trying to correct my mistakes.

 

Video Game Addiction

     My heart really goes out to the parents of Sandy Hook, CT.  I could not imagine the pain those family feel from loosing their children so young and so tragic.  I keep praying for them and pray God eases their pain a little everyday through great, although short, memories.

     Of course with all the tragic shootings that have taken place over the last six months, America is now ready to address the gun laws.  I myself don't own a gun and I'm not familiar with any of the laws or what it takes to get a gun.  I'm sure in the next few months my knowledge will change.  It's funny, I knew my Dad had a gun.  He kept it in his suitcase with his factor supplies locked up.  I guess it was the only case he had with a lock.  It was a pistol, I'm not even sure if he kept bullets in it..but I knew it was in there.

      Anyway, with psychologist and news reporters now looking into the effects of video games on gun violence, I have to take a look at my own child.  It's ironic that my husband and I have been discussing this previously about Marques playing his Xbox live all day.  When I say all day, I'm not exaggerating.  Just this past weekend he was on it from 5:30am to about 2:00am...and only because I made him go to bed.  That is an example of an extreme time, but I know he would do that everyday if he could.  Besides Minecraft, he plays Call of Duty.  I really didn't know how violent Call of Duty was until I watched him play it.

HSC Educational Symposium and Family Weekend Review

     Let me just start of by saying I had a good weekend!  The weather was foggy Saturday, which was okay since we were in meetings all day, but Sunday morning made up for it.

     My family has made a commitment to attend this meeting every year so we can "check in" with the Hemophilia community.  This year, I have to say it was a good check up.

     This year theme was "Today and Beyond".  The Weekend Agenda was full of education sessions for parents as well as the children followed by a Holiday Buffet Dinner and Christmas Celebration.  There were several good sessions that I will break up into a few blog post.

     One of Saturday Morning sessions presented by Michelle Rice, Director of Public Policy of NHF who is responsible for coordinating NHF advocacy efforts at the state and federal levels, provided everyone with a Personal Health Care Insurance Toolkit created by NHF to help you decide which insurance plan is best for your family.  Of course it's the end of the year and time for insurance changes.  My husband always just picks the one that seems to be the best choice to take care of our hemophilia needs.    The toolkit walks you through a worksheet you complete based on information from your own insurance plan.  You can compare dollar for dollar which plan is best for you.  I'm almost scared to check to make sure we did pick the right plan. 

    
     If you were following me on Twitter this weekend at @Prophyholic, you know I had an enlightened moment about the importance of supporting your Chapter, which came up during this session.  Now, don't get me wrong.  I knew it was important to join a Chapter, but I did not understand the correlation between being involved and showing up to events with how much funding your Chapter can receive from drug manufactures and insurance companies to donate to the Chapter.  I guess my ignorance came from always seeing pharmacy providers at events when I attended with my Father and just thought they were part of the package.  Back then, pharmacy providers paid for trips, provided helmets and everything else to keep you as a customer. 
    

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.

Bubble Wrapped Birth: Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

     Please read posting on Bubble Wrapped Birth blog....some great conversations in comments.  Curious to hear other opinions and feelings from Mothers and Sons about playing any sport like 'normal' boys regardless of their hemophilia.
 
Bubble Wrapped Birth: Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

  Also, please let me know if anyone knows of any boy with hemophilia playing middle school, high school, or college football. Very curious to hear their story. 

Organizing Factor Supplies

  Well, I can't keep the twins out of the pantry!  They think it's another room to play in.  Since I currently keep all the boys factor supplies in there, it's not the best place for two year olds to be.  I took the below picture two years ago and everything is still organized the same way.  (Yes, that is organized...lol)  As you know, with home infusion you have to keep everything together and easy to get to three times a week.  Being a Prophyholic Hemo Mom, I'm always looking for ways to simplify the process.

    

     Two years ago I went to the Dollar Tree and brought these containers so I could stop living out the boxes and actually see what I had.  It also was good for my son because he was able to gather his supplies easier for factor day.  I know when I first started with home infusion, it didn't come with any instructions on how to organize all this stuff.  Now that I have two boys, one with a port and one with out, to treat three times a week it's even more important that the supplies stay organized.  

     Well, this way is not going to work anymore.  I'm working on a new way to organize my supplies and will update you when I'm done.

     How do you organize your supplies?

10 Year Hemo Mom Award

 

     Yesterday, my son, Marques turned 10!  I can't believe it, the time went so fast.  He is such a great son.   When I found out I was having a boy, I immediately went into worry mode.  Even though, I had my Dad available and ready to help with my questions,.... I still did not want to have a son with hemophilia.  I never thought of terminating the pregnancy or getting an amniocentesis to confirm he had hemophilia, I just took my 50/50 chance. 

     Even though I was hoping he did not have hemophilia, with my Father's help, I prepared in case he did.  I met with the Hematologist at the Hemophilia Clinic and was educated on hemophilia. The Hematologist sent information to my GYN on all the precautions that needed to be taken such as, not using forceps and using the cord blood during delivery to check for hemophilia.  I chose to have a C-section because my first pregnancy was a C-section and I didn't want to take any chances. 

     Unfortunately, in my case with all the preparedness that was done issues were not avoided.  I can remember waiting in the hallway for the Nurses to deliver the babies from the Nursery..they were a little late and I was getting impatient hence my reason for waiting in the hallway.  I was so excited that I almost claimed a baby boy that was not mine!  After I saw all the other babies delivered to their Mother's room, I became concerned.  The Hematologist I had seen during my pregnancy came to my room instead and informed me my son did have hemophilia and he was in the NICU.  Apparently, they did not test his cord blood but stuck him in both his wrist to test him, so he had a wrist bleed. I immediately broke down...so bad, they moved me to a private room.  Once I got myself together, I went down to sit with him in the NICU.  Both his wrist were wrapped up in huge ace bandages and on a splint attached to an IV.  I tell you, now looking back, I feel fortunate that hemophilia was the only reason he was there. 

     As I look back over the 10 years of raising my son with Hemophilia, yes there were some hard times...  His first major bleed was a head bleed from falling out of my bed when he was a year old....  The worry I felt when he went in surgery to get his port put in and I was out of town for work....  There were times we spent a week in the hospital due to port infections....  Emergency room visits due to other head traumas of running into walls or falling.  Yes, I have cried and prayed to get through these situations but we made it through all of them...thank God! 

     It's been 10 short years for a life I PRAY will be long.  It has been 10 years of staying EDUCATED on hemophilia.  It has been 10 years of being a PROTECTOR of my son but not over protecting him so he doesn't think hemophilia is a handicap.  It has been 10 years of not only him maturing quicker but myself;  putting on my big girl panties and DEALING with a situation instead of crying over it. 

     No..., It doesn't mean I have to stop doing these things because he's 10.  It doesn't mean that hemophilia gets easier because with each age brings a new awareness and/or situation.  I just think I and all my fellow Hemo Moms should get a:

 10 Year HemoMom Award.   

 

 

 

     The first 10 years is the hardest!  Now mind you, I know that my 10 years may have been easier than most...I have heard some horrible experiences...but we made it or you will make it. 

     So Happy 10th Birthday to my son but also Congratulations to me and every other Hemo Mom that made it through the first 10 years!

Being A "Normal" Boy





Swimming Safe Rating

    As a Prophyholic Hemo Mom, I consider myself fortunate because I know my Father's generation did not have access to factor in the home for major or minor bleeds or prophylaxis treatment.  I feel like with my boys being on Prophy, they have a "normal" life like other boys.  Until..., Marques (9..for another 5 days) comes in AGAIN and tells me he wants to play a sport like his friends. 

     Unfortunately, my son's sport of choice is football which is a huge No, No number 3 on the National Hemophilia Foundation Sports Ratings by Activity Chart.  Recent studies have also shown that football is dangerous for all boys, regardless if they have hemophilia, due to head injuries.   With the National Center of Sports Safety reporting that 23% of boys ages 5-14 playing football get injured, I think football with be on our family No, No list as well.

     With football taken off the table, Marques next choice is basketball.  Basketball is also high on the ratings list as a Moderate Dangerous 2.5!  I did talk to his Dr. about this prior to the summer and she said we could work his treatments around his practice and games.  I really haven't been aggressive in finding a place for him to play, but now he is pushing me. 

     I know that I am scared for him to experience a painful bleed in his joints from an injury.  He has been on prophy treatment since he was about 1 1/2 years old, so he does not know what  a bad bleed feels like.  I remember seeing my father hold bags of ice on his knees or elbows when he had a major bleed in his joints.  He had to get two knee replacements because his joints were destroyed and it was painful for him to walk.  Yes, I know we are a long way from that...but I still worry if Marques will develop a target joint bleed from a major fall on the court.  I have to come to terms that getting involved with a sport, I am opening him up to injury.

     He has joined his after school Archery group, which is a Safe number 1 on the ratings chart.  I think he joined so he could shoot something, since I won't buy him a Nerf gun.  I know Archery is not going to be enough for an active boy like him.  He is also getting bored with Boy Scouts, so we just made a deal to do it one more year.

Horseback Riding Moderate-Dangerious Rating

     I know that times have changed in the hemophilia community and there are many precautions that I will have to take so he can have a "normal" boyhood.  In a few years, Marques will be in middle school and he will want to play on the schools Basketball Team.  Who knows, maybe he will be the Star Player and I will be his biggest Cheerleader!

     Does your son play sports?  If so, were you worried? ...Or, are you worried for you son to play a sport?

Hemo Moms need X'ray vision

     Well, I thought I was going to have a simple Labor day weekend updating Marques room.   He is getting so big and turning 10 in a few weeks, so I thought it was time to move him into a queen size bed.  As much as I hate taking up space in his room with a bigger bed, I can't keep coming into his room through the night to put a limb back in the bed. 

     Everything was going great until we were trying to decide what bed frame to use.  We had one bed frame already in place on the floor but it was a full size frame.  In trying to put together the second bed frame to see if it was a queen, Laithan was hurt.

     My husband told me to hold the bed frame, which I did, but the other side broke free and went flying across the room.  Layla and Laithan, both sitting against the closet door trying to be out of the way, was in the line of fire.  Of course the bed frame hits Laithan in the HEAD!  My husband screamed so loud I froze for a minute before I yelled, "We need ice". 

     Of course, as luck would have it the accident happened before I could give him his factor on Saturday, since we missed factor for Friday.  His head swelled up so fast, I couldn't get the factor in him fast enough.

 

 

     I didn't call the Dr. but as I look at these pictures I'm posting, why didn't I?!!!  I didn't ....at the time because of several reasons.  The last time he hit his head they just ask did he faint, is he vomiting, or not acting normal.  I also know that they are more reluctant to do CT scans because of the increase of getting cancer.  My husband also felt like he didn't need to go.

 

     I watched him for all signs of problems for over 8 hours.  I gave factor every 12 hours for the next two days and  factor every 24 hours for the next 4 days.  His head was very tender and I didn't want to stop giving him factor until he didn't say, "ow", when I touched it. 

 

     I think in looking back at what happened, I should of called the Dr. to see if I could and should take him to the emergency room.  Head injuries in hemophiliacs are very serious and because I'm not a Dr. or have X-ray vision, I really didn't know if he was okay.  It is just too much pressure for me to worry if I am doing the right thing. 

 

     Hopefully, I did because he has been acting fine.  It's been a little over a week and he is still being his crazy normal self.  The area is still a little tender and you can still feel a bruise.  I thank God, that he took care of Laithan despite my choices. 

 

     Has your son had an injury where you chose your own treatment?  Do you regret the decision you made?  Do you call your treatment center for every issue?

 

      

New School Year...New Explaining To Do

     "Hi, I'm Lovee', Marques Mom.  He is looking forward to the new year in your class, did they inform you he has hemophilia?"  I'm cutting the conversation a little short, but that's the gist of it.  '

First Day of School 4th Grade

     In the past, I would bring the teacher a info pamphlet on hemophilia so I knew she knew.  This year, I wasn't as prepared.  I don't know, maybe I was more relaxed because he is older going into the 4th grade.  He's not that little boy anymore jumping around.  Now, don't get me wrong, I am still requiring him to wear his helmet at gym and recess...He is still all boy and just as ready to play some football and play as hard as everyone else. 
    
     The Teacher was aware he had hemophilia.  The school nurse already informed her and gave her basic information. 

Marques told me, the first day of school the class had to go around telling everyone something about themselves.  He answered, "I have hemophilia and that is all I'm saying about that and I want to be a trillionaire".



     My first response to him was, "Marques, you can't just blurt that out with no explanation".  Short in sweet would of been, I have hemophilia which is a bleeding disorder and I have to wear a helmet during recess and gym to protect myself from injury.  I don't think that would be hard to say, but he does.  I'm not there in his shoes and he has to deal with all the question, so I remained quiet.  I know he has been frustrated in the past trying to explain it to his class.  However, I don't want him to not want to discuss it. 

     Hopefully, one day this year he will take the time to discuss it and I'm sure if someone directly asks him he will explain it.  Unfortunately, I don't think he will fit his helmet the entire year....so we may be retiring it soon!

Factor Strike

     I considered myself fortunate to have a two year old sit still while I gave him his factor.  I know having hemophilia matures our sons, but even my first son needed to sit on someone's lap.  Not Laithan though. 

     I started giving Laithan his factor in his high chair, since I had no one to hold him during the day.  As he has gotten older, he started sitting on the regular chair by himself while I gave him his factor.  A few weeks ago, something changed.  He started refusing to get his factor.  He would not sit still and just said, "No, Mommy".  No bribes would work; fruit snacks, icee or cookies, the answer still remained, "No, Mommy".  At first when he refused, I could get his older brother to hold his hand and that seemed to work...for a week.  Then it was Daddy's turn to hold his hand...then somewhere in there it turned into sitting on Daddy's lap. 

     Now, Daddy has to almost put him in a death lock grip so I can give him his factor.  It's amazing that a 2 year old has the wiggle strength to still get away.  So, now my husband gives me dirty looks because I can't stick a moving target!  The crazy thing is after I get the needle in, he yells at his Daddy to get out of his seat...

     So, I need to get a new strategy going.  We visited the Dr.'s office last week, the nurse assured me the port still felt great, because I thought that could be a problem.  The older kids go back to school next week, I think getting back into a schedule will help.  I just need to get Laithan to relax again when getting his factor before I have to hurt him and his Daddy!

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! 
  

Happy Father's Day!

    In honor of Father's Day I wanted to give a shout out in heaven to my Father, Richard Oliver Johnson, Sr. 6/27/1951-1/6/2009.  He was a man of many self taught talents.  His biggest talent was being able to connect to people and keep them drawn to him. 
     He used this talent in the hemophilia community as an Outreach Specialist for The New Jersey Hemophilia Association of New Jersey.  His goal as an Outreach specialist was to educate, enlighten and empower the total hemophilia community, regardless of culture, socioeconomic, or gender difference.  He wanted  to make sure the next generation of hemophilia patients did not go through the pain and suffering that his generation went through.
     I was blessed, as a mother of a child with hemophilia, to have him as a reference and to make sure I was connected to the right people and information to care for my son.  I know he would enjoy seeing his Grandson's running and playing pain free, but I know he is watching!   

Where Have I Been?!

     I started this blog thinking I would write on it more often!  What happened I guess I could always blame it on the twins running around all day, keeping up with housework or any of the other million things that distracts us through out the day.  I have to blame it on good old fashion laziness.  I need to get my butt in gear earlier in the day or during nap time to make sure I stay up with this blog.  It does feel good to write and let things out....yes I'm having those feelings right now!! 

     I have to pat myself and my family on the back because we did attend The Hemophilia of SC Educational Symposium Family Weekend/ Christmas Party in December.  Anytime you can get to the beach you have no choice but to enjoy yourself.  We did meet a couple of families we had a chance to talk to during the breakout sessions.  I met one family who just found out their 8 month old has hemophilia and they are learning how to navigate health care being self employed.  I gave them some information for getting free factor from the state, but I wish we would of exchanged numbers.  I could of used a friend that had a son with hemophilia as I was learning how to care for my son.

     I like the Symposium because they provide daycare/activities for all the kids.  The twins (1) went to a daycare with their own age group.  That was the first time they were left with a stranger.  Laithan cried himself to sleep and Layla played quietly but cautiously.  Marques (9) met brothers with hemophilia and got to swim around in the resort pools.  MaRee (13) was able to make friends that she is still keeping in touch with on facebook.  I look forward to us going back next year.

     One of the new things we learned about was Arteriovenous Fistula, which is the veins in the arm can be put together to make a bigger vein that is always ready to access.  This is a procedure that can be done in lieu of getting a port put in. 

     I never had this option presented to me for either one of my sons instead of the port.  Luckily, we have had great results with our port but I would definitely take this option if Laithan runs into trouble since he only had his port a year.  I had a chance to feel the vein in a child that had it done and you can feel the blood running through the vein and he was not bothered by the bigger vein at all. 



    We are definitely going back next year and not just only for the beach!