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?