Living with a Chronic Condition

When you live with a chronic condition you have to be hopeful and positive.  I find that if you don't try to find the positive despite your situation, things will always look bleak.  And when you have a child with a chronic condition you not only have to keep your chin up for yourself but for your child so that they will have the best attitude possible about their condition.

My "Christian" is not your typical child with hemophilia and an inhibitor.  To top it off he is allergic to factor VIII, the clotting factor he needs in his body.  His inhibitor levels are finally low enough to start Immune Tolerance Therapy (ITT), but because of the allergy situation, it is impossible to start ITT.  He has been living with this inhibitor for over 6 years and when he has a bleed it takes much longer to heal than a person with "just" hemophilia and no inhibitor.

We are in the hospital again for a bleed and not having a product that truly works for him is exhausting.  Here we go again with tons of pain meds to keep him comfortable.  Many days missed from school because we cannot control the pain and the bleed at home.  Cancelled appointments, missed days of work and an upheaval of routine for the entire family.

But this is one of those times I just want to crawl under the covers and cry...

....for the crazy, awful pain my son endures

....for the lack of a proven protocol (product) that will work for him.

....for the fact that he feels different than the other kids.

....for not having my mom to call.

Guest Posting....Bullies

I am blogging over at the Hemophilia Federation of America today.

Stop by :)

http://www.hemophiliafed.org/news-stories/moms-blog

Catching Up

My "Christian" has missed quite a bit of school already this year.  We rejoiced because he recently completed 8 days in a row!  Then his port site was yucky and we had to go to the HTC and another day was missed.  Ugh.

What I am coming to understand is that 2nd grade is not what it used to be.  The requirements are just absolutely ridiculous!  Gone are the days of "review" at the beginning of the school year.  We have a tutor working with Christian twice a week to help him make up the time he has missed.

Unfortunately when you have a chronic illness and you miss many days of school (but not enough to qualify as "homebound") getting caught up is difficult.

My son struggles (at times suffers) from his bleeding disorder.  All he wants is to "be like the other kids" and it breaks my heart that the regular things kids are doing is sometimes almost too much for him.

I never thought we would be struggling to keep him caught up with his education.

Looking Back

When I look back at this picture knowing what I know now, it breaks my heart.  I couldn’t tell my "Christian" then what  I know now about how he would struggle and suffer with his hemophilia...that his journey would be filled with hospitals and pain.

Some people would even go so far as to say that I was irresponsible by bringing another child into the world with hemophilia...that I had my hands full with one child and another would be a mistake.

What I do know for sure is that my Christian is here on the planet for a reason.  He came to me ten years after his brother...ten years as I was an "older" mom.  His timing was perfect.  Actually it was God's timing.  Christian's struggles and pain are not without purpose.  He may be the next researcher to find a cure for cancer, or a Nobel Prize winner.  He could be a gifted teacher touching the lives of thousands of students or a musician writing music that touches peoples lives.  He could even be the example another young man with hemophilia needs to move on with their lives as they struggle in pain and wonder why they have been afflicted with this horrible disorder.

I have never doubted why my son is here.  What I struggle with is seeing his pain and not being able to take it away.  It destroys a part of me every time. 

 

But he is here to teach me how to love. 

Minus 5

Typical.  School has been in session for 9 days and my "Christian" has already missed 5 of those days.  Such is life for a child with an inhibitor.  My husband has been with him all week at appointments in Denver with an allergist at National Jewish as well as our hematologist in Denver.

Christian's inhibitor is below 10 and we have been trying to start Immune Tolerance, but he has developed an allergy to Factor 8 (the clotting factor he is missing).  Fortunately we have another product (Factor 7a) that helps him when does have a bleed, but it does not work as well as a Factor 8 product would work in resolving a bleed.

We were hoping the allergist could shed some light on this allergy and he has been working with our hematologist.  Christian was in the hospital yesterday undergoing a process where he would get a small dose of factor 8 then 10 minutes later a larger dose until we could find out what level he could tolerate (Rapid Dosing).

It did not get very far.  At 400 units he started itching.  For him to be up to 100% he would need 3200 units in his body.  This morning he received a 246 unit dose of Factor 8 and this will be what he takes daily to boost his system to recognize the Factor 8.  Slowly but surely we are going to keep hope alive that we will get Factor 8 into his system.

It's going to be a really long process, and I am trying to be hopeful.  It's just hard to be hopeful all of the time.  Sometimes you just need to be disappointed so that you can move on.