Finding Love Being a Hemophiliac?

     Finding love being a hemophiliac seems stupid when I write it, because we wouldn't have so many hemophiliacs if no one loved them, right?  My son, Marques (9), is starting to talk to me more about liking girls...every year now he seems to find a girl in his class he has a crush on.  For the first time though, I started worrying about some girl saying she doesn't like him because he has hemophilia and wears a helmet to play. 

     I expect it is normal for all boys to get turned down by girls for one reason or another...I use to turn guys down for being short...until I met my husband L.O.L.  When I was starting to date and felt the relationship might be serious, I would tell the guy about the possibility of me having a hemophiliac child...I first did this at 17 and the way I was crying probably scared the hell out of him.  I always thought me having the possibility of having a hemophiliac son would be a deal breaker.  I don't want to raise my own kids to think that way.  I want my daughters to be confident that any one worthy of marrying them would stand by them to raise a family regardless what God put before them.  (I pray there is a cure for hemophilia before they have kids)  I hope my sons choose their spouse the same way.

     So I guess I have to be strong for Marques when he comes home that first time and says, "She doesn't like me because I have hemophilia".  I need to be ready for what I am going to say to him so that he doesn't let the fact that he has hemophilia hinder him from being the "Mac Daddy" he thinks he is.

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!

Hemophiliacs in the Army?

     Well, Marques(8) was finally able to win the front seat from his older sister Maree'(12), on our way to take her to the Doctor.  I know he really enjoys sitting up front, so I smile when he wins.  As always, he makes use of this time, by asking me questions about liking a girl or anything else he has on his mind.  I don't know if it is because of all the talk about the 10th Anniversary of 911, but War was the subject of the day!

     Marques was letting me know, he did not want to fight in a War.  He didn't understand why people could not "compromise" (yes, his word) instead of fighting.  He said,  he had a friend that wanted to fight.  For some reason, I started thinking about him getting drafted since he was the oldest son......Then it hit me.....your a bleeder you can't go to war!  Based on what I always remember hearing, the Army does not take people with a handicap or medical issue; but is hemophilia one of them?  I thought I remembered my Dad saying he couldn't go into the military because of his hemophilia, but that was so long ago.  Now that we have factor available and you can self-infuse does that change the requirement?

     Based on what I read on About.com, Marques not wanting to be in the Army is not a problem because the feeling is mutual.  He would automatically fail the military medical standards because he has hemophilia.  I guess I don't have to worry about him being recruited either.
 
     However, It does make me think about other men and women, that do want to protect this Country and fight terrorism; can not because of thier bleeding disorder.  I would have to agree that I would not want them in combat, but what about the other positions in the service that are not front line that they could serve in?  Also, what about the fact that joining the army offers a pay check, tuition for college and most importantly BENEFITS.  I don't know much about the Army, but I would think there was something a person with hemophilia could do to serve the Country.

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.

First Day Of Third Grade!!

First Day of School Picture

     Well, we made it through a great summer break.  Marques (8) is going to be hard to break out of the TV routine, he became accustomed to over the summer!  He went to sleep concerned about starting third grade and going back to school.  I assured him it would be great and not to stress, because last year he woke up with a gray hair.  It was the craziest thing!  Well no gray hair the first day of school for either one of us.

    
This year I was prepared with my Teacher hemophilia information booklet, my hemophilia information sheet from the Hemophilia Treatment Center (HTC) with their information and the school medical information for the nurse. 
    

At the open house, the night before, I gave the information to the Teacher and asked was she aware that Marques had hemophilia.  She informed me, she was and the nurse had already discussed it with her.  Surprised, I asked her if she had any questions and she said, "no" and didn't look too concerned.  I did let her know that Marques had to wear his helmet at recess and gym. 

    
     I know some mothers don't require their son's to wear a helmet.  I went to a hemophilia event years ago when Marques was 3 or 4 and some of the Mothers were against it.  I choose to have him wear it because his first major bleed was a head bleed, from falling from my bed when he was about one.  After that, he had another bleed in the same area and there was no accident.  I am very paranoid about that area.  I know at 8 years old and almost 5 feet tall, he is not thrilled to wear a thick blue helmet.  Since he has worn a helmet all of his life, it is still normal to him. 

     The first day of school is a little difficult for Marques.  He has new people in class asking him questions about why he needs to wear a helmet and what hemophilia is.  After that though, his friends start making sure he wears his helmet to recess and gym.  I am almost ready to let him stop wearing it but before school ended last year the nurse literally called me everyday regarding Marques falling, hitting his head or running into someone.  The week finally ended with me picking him up from school with a busted lip, scratched forehead and knee.  Thank the stars he was wearing his helmet, because it could of been worse.  I told him, when I feel he's calmed down a bit as he gets older, he can stop wearing the helmet.

    
     So anyway, Marques went off to school and I was off to take Laithan (18 mnths) to the HTC for a followup regarding his abscess (see previous post). While I was there my cell phone rings and it is the school nurse!!  (Yes, I have her number in contacts!!)  OMG!  I am thinking,  "already....the first day"!  The first thing she says is "He's okay, nothing happened, he just came to see me so I could call you and let you know he forgot his helmet."  "He said he would be careful and take it easy outside playing."  How cute is he and how mature he has become to want to call and let me know. 

    
     Later that night as I am giving him his wednesday prophy treatment I ask,  "So how was recess and did you take it easy." He said "Yes, I just played basketball," and he looks at me and smirks!  All I could say is, "Go put your helmet in your book bag!"

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!!! 

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