A Little "Normal"

Tonight we went to have dinner with friends.  They grilled steaks and we had great conversation.  My "Christian" was looking forward to playing with their children who are both close in age.  Our friends were so thoughtful because they had already planned for their children to bring toys from upstairs to the floor level since they knew Christian is still not able to walk. 

But it takes more than a bent knee to stop my warrior.  He went outside, played in the sandbox, loved on their big, cuddly dogs, made it up the stairs several times (scooting on his hiney) not missing a beat.

When we left he was sweaty and flushed.

It was a great evening :)

Christian had an evening of "normal" kid stuff and no one even gave his bent knee a second thought.  They just wanted to play and they played hard.

I find that hemophilia takes so much away from my son and our entire family sometimes.  But despite the roadblocks that are put in our way because of this nasty disorder we all manage to move forward.  How we get past the roadblocks may take some creative thinking, but we always manage.

I love those moments when I see my son keeping up with others.  He may be a little slower to get around, but his smile and his spirit are alive and well.

A Big Realization

Sometimes you just play the cards you have been dealt the best you can.  You don't even know the difference.  For me I don't know if I would know what to do if I had a child without a bleeding disorder!  Both of my sons are extremely different but the fact is that they both need clotting factor to live as normal a life as possible.

This past weekend I attended the NHF Inhibitor Summit.  I always enjoy being in the same room as other families who also deal with medical issues that are similar to those of my youngest son.  The truth is when you have hemophilia, you are one in several thousand in the United States and that is pretty rare.  But this weekend a statistic hit me between the eyeballs.  Those affected with an inhibitor, like my youngest son, are an even smaller group.  About 1,000 in the country.  And when the doctor leading a discussion was talking to us about immunology she even mentioned, as she looked straight at me, that there are even instances now occurring with inhibitor patients developing allergies to factor VIII…and she only knew of four cases in the country and we were one of those.

I knew our case was rare and I am so glad that my husband and I have been fighting the good fight for the past few years to find something that works.  Traveling out of state for treatment, helping doctors "play nice" and develop relationships, fighting with insurance companies to cover a drug that just might be the answer...

I don't regret a thing.  I would love to take away the bleeding disorder!  I would love for my children to have never experienced the physical pain they have endured in their lives…but what I know is that my kids are rarities…unique personalities…exceptions to the rule.  How can that be a bad thing?

My big realization may have initially been the reminder that my children really do live with a very rare, serious medical condition, but the greatest realization today is that I have been blessed with a passion for my children.  A passion to give them the best medical care possible, never taking no for an answer and making sure the next person to come along benefits from what we have experienced.

Relief

Four incisions and a week later and  port #5 is healing beautifully :)

"Christian" developed a clot that has essentially become part of his body.  The surgeons tried to break it up and it just won't budge.  Because of this issue the port had to be placed in a place we had not expected, his lower abdomen.

The surgery lasted much longer than we anticipated (which was very nerve wracking) but all is well.

He even seems to like the port in this new area.

We'll know more this week as we access it for the first time on our own.

These things don't get easier, but what I know for sure is that you have to be positive and pray for the best. 

And when you are on the other side of a stressful, scary situation that completely freaks you out...you start to breathe again.

#5 Coming Soon

 

I had trouble accessing "Christian's" port last week (while his Dad was out of town).  What started as needing help accessing turned into a dye study to check placement and we learned that the port had coiled and developed a clot.

I am glad it worked out the way it did without the port completely shutting down but I sure didn't expect to hear this kind of news.

Port #5 is scheduled to be placed on Monday, June 16th.  My son will be admitted the day before and hopefully will not endure excessive bleeding.  I know this needs to be done and am not "worried"….at least not yet.

At one point we were unsure as to whether or not to place a new port (when the time came) or have a Broviac placed.  My Christian suffers from PTSD and accessing is a challenge.  The past couple of months have been a huge improvement as we have worked with him with a play therapist and simply found that we have to take plenty of extra time with him while accessing.  He needs some control during the process and gives us the "thumbs up" when he is ready for the needle to come into view.

The funny thing is that I don't know if we have ever known ahead of time that we were going into the hospital for an admission.  My family can truly be considered experts when it comes down to gathering items together at a moment's notice to get to the hospital, but knowing ahead of time and being able to plan and prepare is new.  It's a different perspective.

I have my list of questions for the surgeon as well as my suggestions for treatment regarding factor and ultimately I know that this is the best move for my son.

Knowing it's the best move doesn't make it any easier.

Happy Birthday

 

 

May 22, 1962

 

I don't know what life would have been like if my brother had lived.

Would he have been annoyed with a little sister following him wherever he went?

I like to think he could have whipped up a mean peanut butter sandwich and taken me out for ice cream on a hot afternoon. 

Maybe he would have had a passion for music like I do?

I like to think he would have come to my band concerts and after a halftime show on a Friday night have patted me on the back and said, "Nice job!" 

And when my sons were born I imagine he would have been at the hospital making sure that I was okay and would have been one of the first to love on his new nephews .... and later given me a shoulder to cry on when they were diagnosed with hemophilia.

I have a picture of him in my mind as a strong, healthy man who did everything he could to live with hemophilia even with treatment that was not the best.

The few that knew him are not around anymore and his legacy could easily fade away, but today I can say that I proudly say “Ronaldo Julian Campos was born 52 years ago today...he was my brother."

Today I Am Thankful For:

1. foil
2. cake mix
3. old bananas
4. crooked lampshades
5. birthdays