This is not what we want to hear from a
specialist that has been treating our son for the past 2 ½ years. I will also
say, that it’s not the worst thing we could have heard. In our family, we find the good in everything and
this situation is no different….however, it’s not to say that we won’t take a
moment and feel our disappointment.
As most people that follow this blog know, our 17 year old
son has osteogenisis imperfecta (OI), otherwise known as brittle bone disease.
He gets his nearsightedness from his dad along with his strong jaw line and
political views…he gets his bones from me.
When I was growing up, management of the disease was key.
Eat calcium rich foods, take a supplement and don’t put yourself into positions
where you could get hurt (no skiing, skating, etc..). It has been a way of life
and mostly why I focus on fitness and controlling what I can to stay healthy.
Weight baring activities are also encouraged.
When Ian turned 13, he had a growth spurt that made his
bones vulnerable to breaks. We (he) had a femur fracture, 2 vertebrae fractures
and a scapula fracture in the matter of 2 years. We sought out a specialist to
see if anything could be done. We started with our orthopedist who connected us
with a specialist and then another…eventually we found an endocrinologist who
has a special interested in OI.
Long story super short, we have been going to Connecticut Children’s
Hospital for the past 2 years (once every 6 months) to get a special infusion
that has shown promising results in OI patients. Over the past 2 years, we (and
I really mean our son) have endured many hours of waiting, needle sticks, blood
draws, student lab techs taking 7 pricks to get to the vein, screams on the
floor we’re treated on, a code blue (not us), hospital food, the same questions
asked 17 times by different specialists, etc….And today was the day we got some
answers…what has the past 2 years done for us (him, or son).
Things are pretty much the same…we were shown graphs,
percentages and our “Z score”…but the bottom line is things are pretty much just
as they were 2 years ago…I didn’t deny our son the right to feel disappointed (aka f'ing pissed).
He (and we) certainly have the right to our feelings. We had hoped for at least
a little improvement, some sign that the past 2 years of treatment weren’t for
nothing.
So we’re relying on the hope that if we didn’t go through
what we did than perhaps things may have gotten worse. We are holding on to
that. I’ve been told in business “hope is not a strategy”, but I would say hope
certainly has its place here. As disappointed as we are that we didn’t have
bone growth, we didn’t have deterioration either…and that, my friends is a
positive. Let's face it, we're not fighting cancer.
We were told to follow the OI Foundation’s website and keep
up to date on the latest treatments…there are many promising therapies that
could be offered soon. Ian is encouraged to build bone with a diet rich in
calcium and vitamin D and increase his weight baring exercises. (Diet and exercise
is the best medicine for everything in my book).
So with that, I’ll leave you with my jumbled mess of what is
running through my head tonight,,. Until next time…and I’m certain it will be
awesomely awesome. Cheers.
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