Father's Day Reminds Me I will Forever Miss My Dad

CEO of NHF Val Bias and I
at Hemophilia of SC Annual Meeting 2013

     I was so surprised when I received the Hemophilia of South Carolina Annual Meeting agenda and Val Bias was coming to discuss, "My Life Our Future, Genotyping for Progress in Hemophilia".  Wow, the CEO of NHF coming to little old SC chapter meeting!  I was excited because Val Bias was an old friend of my Dad, whom I never met.

     So after the board dinner and meeting, I waited to introduce my family to Val Bias.  I somehow was trying to convince myself that he wouldn't remember my Dad, so maybe I should change my mind.  My husband encouraged me to stay and wait.  I shyly said, "Hi, I'm Lovee' the daughter of Richard Johnson, do you remember my Dad?"  Of course, he did remember my Dad and also commented that he was a good friend and a good leader in the community!  I proudly introduced him to my sons.  He smiled and said, "WOW"!  

     That Wow, made me feel emotional.  I immediately thought about my Dad never meeting Laithan.  Marques was only 6 years old when my Dad passed so, he doesn't have a vivid memory of my Dad.  It was such a great feeling to introduce them to someone that had a high regard for my Dad.   

     I sometimes wonder what his involvement in the hemophilia community would be if he was still alive and healthy.  It's only been 4 years since he died, but I would love to hear his opinion on how things have changed.  I know that he was impressed with how well Marques was doing on prophy, but I would love to see his face when I tell him we are signing up Marques for basketball.  We are even going to find Laithan a toddler baseball team, because the boy cannot get enough of playing it!  

Marques age 1 and my Dad at
Hemophilia Association of NJ fall gathering

     The effects of hemophilia on my Dad's life is different than my sons'.  They have quick access to medicine and doctors.   Also, because of what happened to him getting HIV, there have been advancements to make sure they are getting clean medicine.  I will never lose the mindfulness of how big a deal it is that my sons are living a pain free life.  My father lived in pain every day of my life.  I know there were things he couldn't do or come to because of that pain.  I do not want my grandchildren to have a father that is living in pain and restricted in what he can do with them or for them because of hemophilia.

     I really had the best Dad!  My friends loved coming over to my house to talk to him.  He even tutored my best friend in math.  My extended family adored my Dad.  He was the leader in the family and everyone valued his opinion.  As I got older, my Dad became my best friend.  I had no secrets with him.  My first husband hated how close we were.  I guess there should be some things you keep between you and your husband, but I discussed everything with my parents.     I would always say, "My Dad said....", which I guess, I can see now, how that can get on somebody's nerves!  I don't think I have really gotten over grieving his lost.  I'm not in everyday depression, however, I do cry easily at any Dad related movies..you should of seen me at "The Croods" movie.  

     I really do miss him!  I believe that he can see my children, but I wish they could sit on his lap and he could play loud music for them to dance to and share his candy bag.  He was the best grandfather and I feel like my youngest children missed out on knowing a great person.  

     It's Father's Day this weekend and his birthday this month and the next few weeks will be hard.  I will share stories and pictures of him with my kids.  My heart will continue to cry the lost of him, but I will continue to smile.  I know he continues to live in me and through them.

     Happy Father's Day Daddy!

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.

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?

 

      

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!

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!

Mistaken bleed

     I started this blog thinking I would not have enough content to even write about a bad bleed episode; but it was almost as soon as I hit the publish button on my last and first blog trouble began.....

     My husband and I noticed that Laithan was really fussy and kept trying to get something off his back.  I rubbed his back, wiped it with a rag and check it out to see what he was trying to get off.  I didn't see anything, but what ever it was kept coming back.  A few days later, I was changing his diaper and noticed a "bruise" right on the split of his butt cheek...ouch!!  Okay, so that is what has been bothering him and what he was trying to wipe off.  The "bruise" didn't stop him from playing or walking, but it was uncomfortable for him to sit down to eat and to get his diaper changed.  I gave him an extra dose of factor.  I did notice a drop of blood, however I couldn't tell where it was coming from.  I even held ice on the area a few times which he kept trying to hold himself..too cute.

     Then on day, I'm cooking dinner and I hear a fall and Laithan is crying, when I turned around  he was holding his butt.  The tears started rolling and he was crying loud, so I knew he must of fell on his "bruise".  As I picked him up, I heared another splat and his twin sister Layla was lying on her back....apparently she poured juice on the hardwood floors.  (It's funny how you respond differently to each child taking the same fall) 

     It was factor night anyway, so I decided to give Laithan two boxes because now the "bruise" was red and he would not let me put him down.  Then, I noticed he was very warm....which is not good when your child has a port (could be a sign of a line infection).  I started feeling everyone in the house, hopping that someone else would feel warm as well; no such luck. 

     After coming out of denial, I took his temperature and it was 102 degrees!!!!!  My husband was still in denial, just telling me to give him Tylenol and wait to see how he feels tomorrow before calling the doctor.  I knew better!  After dealing with a line infection with Marques (8), tomorrow would not make a difference... and everything I went through to get this line in.....I refuse to loose it. 

     So now on top of dealing with a "bruise" on his butt, I had to deal with a line infection in his port....did I mention we were trying to go on a vacation in 72 hours!!  Speeding up the story...when we finally see the emergency room doctor he looks at his "bruise" on the butt and says it's and ABSCESS!!! 

    



Laithan playing in hospital play room.

     Bingo..hence the reason for the sudden 102 fever, which mysteriously went away with no medicine before we hit the emergency room.  How in the world did he get an abscess!  They drained the abscess and took blood cultures from the port and admitted us into the hospital.  After 3 days on anti-biotics it was confirmed the abscess on his butt was positive for MRSA but the port was clean....thank the Lord.  I am totally at a lost about how he could of got MRSA.  The nurses kept telling me they have seen it a lot lately.  They said it could just happen from an open scratch in that area. 

     We were released from the hospital giving me 20hours to pack up 6 people to get ready for our 3 day beach vacation.  Laithan has to stay on anti-biotics for 10 days and get factor everyday until the area, where they drained the abscess, heals so Prophyholic HemoMom will be very busy!!!