Wishbone Day 2017

I meant to post on May 6th, which was Wishbone Day, but between soccer games, Saturday projects, play dates, concerts and a mommy/daddy/daughter date with Eve, the opportunity escaped me.  Still, the entire week is OI awareness week, so I figure I’m still on time and can call it a win.

We all wore yellow on Saturday to raise awareness of osteogenesis imperfecta, the genetic bone disorder with which Jack was born.  We are still learning about OI ourselves, and hope to participate more fully in raising awareness and improving the condition of life for the individuals affected by this rare disorder.  Lily wants to become a geneticist and find a cure for OI, so there’s that.

When Jack was diagnosed over a year ago, after suffering a femoral fracture at the tender age of one month, we were pretty clueless as to  what life would look like for our sweet little boy.  The type of OI with which he was diagnosed (Type III/IV) indicated anywhere between dozens and hundred of fractures in a lifetime, moderate to severe bone deformities, short stature, potential hearing loss in early adulthood, 50% chance of brittle teeth, etc.  We weren’t even sure if Jack would ever walk.

To be clear, we have never feared what the future holds for Jack.  Our understanding of the purpose of this life softens the blow of every hardship we encounter and we would go forward in faith no matter how severe Jack’s condition.  Likewise, our understanding of the purpose of this life demands that we recognize and are grateful for every way in which Jack’s condition has exceeded our expectations in terms of severity.  And it has.

So we still don’t know much.  Here’s what we DO know:

1.  Modern medicine is glorious.  Without the regular infusions Jack has been getting to strengthen his bones, I dare say we would have seen a much higher incidence of fractures.  He’s only had one  in over a year.  As a side note, when we viewed the X-ray of his wrist after his recent fracture, you could see lines across his lower arm bones, much like tree rings, indicating bone growth.  Without pamidronate, the regular course of treatment for young OI kids, Jack’s limbs would be even shorter than they are.
2. Jack is going to be short.  This comes as no surprise and we are, in fact, grateful that he is even ON the growth charts, albeit hovering in the 3rd percentile.
3. Jack has dentinogenesis imperfecta, or brittle teeth, which is present in about half of OI patients.  He popped his first tooth at 6 1/2 months, WAY before any of my other kids had, which made me suspicious.  Sure enough, as his teeth have grown in, they have the telltale signs of a dentin deficiency, as they are discolored and somewhat translucent.  His dental care began at age 9 months and will prove to be rather involved.  And expensive.  We still think he has a winning smile.

4.  Jack has met all of his gross motor skill    milestones on schedule and is walking like a champ!  With increased mobility comes risk, so although we are thrilled that his bones are holding up under the weight of his body, we can’t help but cringe every time he tries to scale something.  Nevertheless, I would say he is the most cautious of all my toddlers.  It is apparent that he was blessed with a personality to match his fragile body.  Not foolproof, but to say we are grateful that he is not throwing himself off the top of the backyard slide (or anything else, for that matter) would be an understatement.

Jack is a bright, sensitive, sweet child who has brought a light and joy into our home that cannot be measured.  We are grateful for the concern and support our family and friends continue to demonstrate and look forward to many years of learning from the unbreakable spirit with which Jack has graced our lives.