I'm Just Amazed

I have a Facebook account. I normally check in during the evenings, but sometimes I get messages during the day when someone posts to a couple of the groups I belong to. One of those groups is "Living With Hemophilia and Inhibitors." I was reading through a few posts the other day and was just blown away at how amazingly smart these caregivers are! When you look at the comments, often you would think that "these must be healthcare professionals."

No, most of us who parent children with a bleeding disorder are not clinicians, but we do know what is best for our children. Sometimes it's that good old "intuition" that kicks in and leads us to making the best decisions about the care of our children. I tend to believe that God has a big hand in the "intuition" department, but call it what you like, it's an important part of caring for our children.

I know, I know....

I should never say this aloud or even write it, but hemophilia has really been behaving in our house lately.

"Lance" had a bleed around his knee (soft tissue) several weeks ago and it was a wake up call for him to get back to his regular infusing schedule without his Dad and I hounding him constantly. Sometimes that's what it takes.

"Christian" has the "normal" bruising, but all in all is fairly "clean", with the exception of the big bruise on his chin (who knows what he did to get that one:)

I even caught myself wondering when the last ankle bleed was for Christian. For some time it had been a weekly thing for him as he struggled with his target right ankle, but all is calm for now.

I am so grateful.

Grateful that we have plenty of factor.

Grateful that we have a fantastic homecare.

Grateful that Christian's port is "flushing beautifully."

Gratfeful that hemophilia is manageable unlike so many other disease states.

I

If this is what we have to deal with, so be it. I am just grateful beyond words that I have been blessed with two beautiful boys.

The School Nurse

Yes, I think my "Christian" has become a regular at the school nurse. Part of the problem is that his teachers are still pretty nervous about hemophilia. When in doubt, off to the clinic! Don't get me wrong, I would much rather he go to the clinic than have an injury overlooked. But, yes, I am getting a few calls weekly and go up to the school at least once during the week to check on him.

I am a little worried that he might think that going to the clinic is a "treat." I've already been telling him to "stay in class and not go to the clinic all of the time." I think he gets it, he's just excited about everything at school.

Have you had issues with your child at the school clinic?

Change

I don't like change. It is inevitable. But I still don't like it. We are having some pretty major issues with the deterioration of our current Hemophilia Treatment Center. It is very scary, especially when the next closest one is at least six hours away. But sometimes the decisions that are most difficult are the most important and extremely necessary.

I need a hematologist that is experienced with inhibitors monitoring my "Christian." Any hematologist will not do. That was an important piece of advice I picked up at the Inhibitor Summit this past summer. I can't keep my head in the sand and think that overnight everything will be in place at the treatment center. It will take time.

No matter what it takes...traveling out of state, making phone call after phone call to follow up, driving a long distance for routine blood work...I have to make sure my son is being monitored as best as possible.

Beads

My "Christian" brought me a surprise from school...a pipe cleaner bracelet with five beads. I wear it proudly. Not just because my sweet boy made it for me, but because a year ago he could have beaded this pipecleaner. The nerve damage done by the first PICC line attempt was severe. It took many, many months before he could touch his index finger to his thumb. I am stepping back and taking joy in the little things...assisting with kindergarten homework, cleaning the kitchen after a satisfying meal, and little beaded bracelets.