Another dilemma, another dose of faith

I recently posted about visiting the Metabolic Bone Disease Clinic at Children's Hospital in Columbus.  I have to say, I wondered if it would do us any good as we've learned that there are not a lot of 'treatments' for OsteoPETrosis.  You just learn to deal with what it hands you.

From that meeting, they scheduled a meeting with a new neurosurgeon at OSU.  We went to the visit and really liked the doctor.  He ordered an MRI/Catscan to get a base line for the size of the optic canals (which we had to have surgery on in the past to widen).  We received the results last week and the good news is that the canals are of good, stable size.  The bad news is that they found a 7 mm colloid cyst in the 3rd ventricle of Kaleb's brain.  This was the first meeting with a neurosurgeon that I did not attend because we thought it was a 'routine' visit, not expecting anything major.  

Since the meeting, we've scheduled a consultation with the neurosurgeon who performed the optic canal decompressions.  He is retiring on April 25 so I have to believe that God's hand is at work, getting us in to receive his opinion before he retires.

We are concerned about the cyst and await the news from the appointment on Tuesday.  Praying that God is with Kaleb during this latest trial and that the outcome is better than our expectations.

Lori

Sixteen years later....

I can remember the feeling all too well…the tightening in your chest….the rapid breathing…the feelings of your body trying to make sense of what the doctor just said, “Your son has osteopetrosis.” At first, I was bewildered. Then I was scared. At one point I was one very angry woman. I was confused. I felt hopeless. All alone to deal with these horrible words and I felt lost.

This didn’t make sense to me. Yes, my family had a history of broken bones. That is the extent to what I knew about it. Nothing major. Put a cast on. It heals. Take it off and go on your way. So, why was I being told this by a pediatric ophthalmologist? This didn’t make any sense. It affects the eyes? No way.

When I started my quest for learning about OsteoPETrosis, my 'baby' was quite small. We learned that he had the disease when he was 2 1/2 years old. He's now a SIXTEEN year old young man. Wow...where did the time go?

Over the years, my toddler become a boy who learned to run, jump, play, develop friendships, become a history buff, become a semi-entrepreneur selling his goods every summer weekend at flea markets, develop respect and appreciation for authority and truly become a son I only once dreamed that he would become. Kaleb can intrigue the oldest and youngest in the crowd. Once a conversation has been had with Kaleb, many people are amazed, inspired and very thankful that they were part of that conversation. I've witnessed many highly educated individuals walk away in 'amazement' at the knowledge stuffed in that head of his!

We've also unfortunately spent a lot of that time sitting in doctor's office, undergoing procedures including MRIs, catscan, xrays, sitting with researchers, attending benefit dinners, breaking vertebraes in the back and breaking the pelvis in two, getting casts/splints/braces/wheelchairs, learning the ropes of being wheelchair dependent, undergoing surgeries including optic canal decompressions via craniotomy, reaching out to other families and sharing each of our knowledge re: OP and trying to provide comfort to relieve the pain from the effects of a horrible disease.

Over the years I have heard things like "don't let this disease control him", "make sure he still has a life", "he is stronger than this disease", etc, etc., etc. What I want to say in response is you are right, the disease SHOULD not control him, he DOES still have a life (just different than we expected) and he IS the strongest person I know.  Bone pain is not seen.  Bone grinding is not seen.  The reshaping of the ball of the hip is not seen.  What I see instead is a determined young man who will not stop.  I am so proud to be his mom.

Lori