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.

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?

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!

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! 
  

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?

A New Phase Of Life

     So it has been awhile since I've posted anything....not for a lack of having anything to say. I have been spending all of my time trying to free myself from a business I started, that did not work out. Those issues are holding me back from completely moving on to a new phase in my life.  It is funny, now that I have 4 kids with the oldest and youngest having an 11 year age difference, I think I just may be replaying a previous phase differently. 

     With MaRee' (11) and Marques (9) I was a workaholic Mom.  Maree' stayed with my Mom for the day until she was about 4 before we sent her to Chesterbrook Academy (daycare).  Being the first grandchild my parents had around, they were uncomfortable with her going to daycare with out being able to talk...in case someone did something to her she could tell us.  With Marques, he stayed 6 months with my sister then off to Chesterbrook. 

     It would seem, we would be more worried about Marques.  He had hemophilia and he was the first grandchild with it.  I did make sure a nurse visited the daycare to do a presentation about Hemophilia to his teachers.  When he was about 3, we even had the nurse start going to the daycare center for his prophy treatments.  Chesterbrook provided a spot in the refrigerator for his factor, so I really became removed from the process. 

     Besides educating the staff, Marques also wore a helmet and knee pads from the time he started walking.   As I think back, we had a very successful time with Marques at daycare and I need to thank the lord for protecting him from any major issues.  Like I said, I was a workaholic Mom, I was working close to 12-14 hours a day and I did that from about 1999 to 2007!
 

     Now, with Layla and Laithan (1) I am a stay at home Mom.   So, in this phase of my life I get to take care of my children differently.  I have to say, I feel more protective of them.  Maybe, because I have more time to think instead of just doing.  I can not imagine putting Laithan in daycare and not worrying about him getting hurt.  Shucks, I'm at home with him everyday and I worry about him hurting himself; the boy is bonkers!!! Another concern for me is that in SC I don't have a nurse that can come out for emergencies....I am the "nurse" for those emergencies.  (previously lived in NJ) 
 

     I'm glad I have the opportunity of re-doing the toddler phase and having the opportunity to re-do it being a stay-at-home Mom.  (Even though, at times I have an urge to work... but don't all recovering workaholics!)  I know, my older kids like me being home now and I think they need me more even if it's only to drive them to activities!  I pray my husband can keep maintaining us so I can maintain the family!

Insurance Not Making It Affordable!!!

     For the last 7 years I have had it easy being a Prophyholic HemoMom.  My ex-husband had great insurance!  When it was time for Marques (8) to get his port, I didn't think twice about it, getting his factor or at the time having nurses come out to the house....no problem, we paid nothing out of pocket.  I knew not having "good" insurance was a problem for some hemophiliacs like my Dad, so I was grateful for the insurance my ex-husband had. 

     When I had Laithan and Layla (1) with my current husband, he did not have any insurance.  He was working a temp to perm job at the time, so we were hoping he would get hired before I had the twins.  Unfortunately, that didn't happen so I tried applying for Medicaid but was denied.  Laithan's first few hematology appointments I still owe for today....Luckily, Baxter had a free sample program so we were able to get 6 doses of factor free.  I just prayed we wouldn't need them or it would last us until we had insurance.
    
     After some guidance from the Hematologist Clinic Social Worker, I was able to find a program in SC called the Child Rehabilitative Services (CRS).  They provide free blood products and supplies to children with Hemophilia.  When we were approved for that program, I was jumping for joy and proud of myself for researching, driving down to the health office, completing the paperwork and getting approved.  Finally, when the twins were 7 months old my husband was hired permanently and we finally had insurance.  The insurance now paid for the Dr. appointments, but I was still getting the factor through CRS. 
    
     After thinking, "okay I have this all under control!" My ex-husband has decided to move closer, which means that Marques no longer has the "good" insurance.  My ex-husband job has a co-pay for the factor which will cost me about $200 month (so funny, UPS just rung the door bell to deliver it).  Still, I know for some families they pay more than $200 month, but since I am now a stay-at-home Mom I don't know how to stick this $200 in our budget.  However, I do know I can get his factor for free like Laithans.  I will be going down to my County's CRS and adding him onto the application.  I also now have a co-pay of  $65 to see the hematologist verses the $10 and $130 emergency room co-pay verses $50.
    
     Thank you to all the hemophilia health advocates, hemophilia associations and families that fight for these state programs!!  I am now dealing with the true realities of how expensive being a Prophyholic HemoMom really is.

Prophyholic Hemo Mom

     No, the term prophyholic does not exist....yet.  I just made it up as I began to think about what I wanted this blog to be about.  I did not want to base this blog just on problems I encounter raising hemophiliac son's because I would not have enough content (knock on wood and praise the lord).  That led me to think about how much easier things are because both of my son's are now being treated prophylaxis.  I guess I need to define a couple of things before I continue:

    Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
    Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
    
     I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old.  Marques has been on prophy since he was 16 mnths old.   He fell out of my bed (what a heart break that was for me...I'll discuss in another post).  Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.

     So, three times a week I get my assembly line together so I can factor them up.  Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health.  I've seen the pain my Dad experienced from target joint bleeds and how it crippled him.  I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!

 

Marques listening in on Laithan and Layla