Wednesday, January 30, 2013


Don’t you just love when you put your child with a bleeding disorder to bed and you’re thinking how grateful you are for an uneventful day?  Then when he wakes up the next morning and he can’t walk because his knee is blown up.

Yes, this is life with hemophilia and an inhibitor.  You just never know what is going to trigger a bleed.  I love when my healthcare provider asks me “Was he doing anything to cause the bleed?”  95% of the time all I can say is “He is just being “Christian” J
So many times I wish there was a reason for a bleed.  If I had seen my son fall, or bump into something…that would explain it and I would halfway expect something to happen.  One thing is for sure…I listen to my son.  He always knows when a bleed is starting.  Sometimes it takes quite a while for the bleed to become evident and other times the affected area just blows up.
You would think that a “seasoned “ hemophilia parent like myself would get used to hospitalizations, bleeds, infusing every 3 hours, doctor’s visits, and blood draws.  But the reality is that you can never be completely emotionally ready to see your child struggle. 
A 7 year old shouldn’t have to rely on a walker or a wheelchair or have to miss tons of school.  But that is part of our reality with hemophilia and an inhibitor.
I’m just grateful for my son, just the way he is, struggles and all.

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Sunday, January 13, 2013

It Never Ends...

We are finally back to dosing "Christian" once a day.

Monday is coming and he will be back at school (with a wheelchair for a few days)!

He wakes up this morning with a lump over his eye...he fell out of bed and hit the nightstand...

It just doesn't just have to laugh sometimes and count your blessings :)


Tuesday, January 8, 2013

A New Target Joint

So much for "Christian" getting back to school after Christmas vacation...

He is having a pretty significant knee bleed. Just when we thought things were going well and we were looking forward to "schedule". And it looks like it is unofficially a new target joint...Right knee and right ankle.

What's hard to believe is that he is not in extreme pain. His knee is 2.5 centimeters larger than the unaffected knee. When his ankle bleeds his pain is uncontrollable.

I guess every joint is different in how pain manifests.

Q3 continues.....