Metabolic Bone Disease Clinic

Thankfully, we were connected to the Metabolic Bone Disease clinic at Children's in Columbus.  We had a consultation yesterday with 2 doctors from the clinic who were great.  They asked the right questions but prior to our visit had made it known that they had not seen many patients with Osteopetrosis.  The great news is that they are willing to take Kaleb's case and manage his care.  Brings a huge smile to all our faces.

We are scheduled to meet with an orthopedic surgeon to discuss Kaleb's scoliosis.  He has fractured his L4 and L5 previously so we hope to learn how much is related to the fractures and how much related to the OP.  We need to ensure that the scoliosis is not affecting his lungs/heart.  We had a blood test and a urine test.  We'll be having a kidney ultrasound as well as a consultation with a eew neurosurgeon.  We're scared to be starting the next generation of Kaleb's medical team but hopeful that it will result in nothing but good.

November 8, only 6 days from now, marks 6 years that Kaleb has now been in a wheelchair.  Remember, this is the same child who ran and jumped and did everything a physically healthy 8 year old boy would do....and he has now spent 6 years in a wheelchair, not due to an accident but a rare bone disease, osteoPETrosis. 

I know that we must go on....and accept the our normal...which I feel that we do very well.  But let me tell you that as a parent...it is truly heartwrenching.  That is the best word I can use to describe our experience with Osteopetrosis.  God bless all those that suffer from this rare, unknown disease. Since it's a rare disease, there is little research because a cure would only affect a few...not millions.  I pray that the day comes when a cure is found for this rare disease.