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.
Wednesday, November 2, 2011
Friday, September 23, 2011
The trials of 2011
2011 is winding down and I cannot believe this is the first post I’ve made all year! I guess that says a lot in itself, that our lives have been a little hectic.
Kaleb is now back in school, his sophomore year! He is developing into a young man that any mother would be very proud of and I am no exception. I could not ask for a better son and feel very blessed to have him in my life.
2011 has been filled with the deaths of many loved ones, starting in January with my dad’s death as a result of a broken neck in a car accident. My dad had suffered for many, many years from Osteopetrosis but did not complain one bit. He was 62 years old at the time of his death and had suffered from so many broken bones I cannot even begin to recount. The last 10 years of his life, osteomyelitis had become his unwanted companion and it caused him so much pain. He had gone to a world renowned hospital to have them examine his teeth and they decided to pull all the teeth and replace with dentures. Due to the disease, he was left with jagged fragments of teeth throughout his mouth and a mouth full of infection. No one would then begin to touch his mouth, as they didn’t know what to do with the mess that was left. And so, he was left to deal with osteomyelitis until the end of his life.
My heart hurts that he is no longer with us but each day that I begin to grieve for him, I realize that all the pain he suffered for all those years is now gone. He is now pain free for the first time and that brings me a lot of comfort.
At the time of dad’s death, we wanted to try to donate his body for research (specifically for Osteopetrosis). Due to the unexpected nature of his death, we were not able to donate dad’s body but since his death I have found that individuals can arrange to have their body donated to Indiana University Anatomical Education Program (http://anatomy.iupui.edu/anatomical-education/anatomical-education-faq/). I have filled out my form and have notified my family that at the time of my death, this is my ultimate wish. If it will help them learn about Osteopetrosis and prevent others from suffering as my family has, nothing could make me happier.
We are once again in search of doctors who treat Osteopetrosis. Kaleb’s neurosurgeon who has treated Kaleb since he was 2 is no longer practicing. He was our ‘go-to’ doctor who helped us immensely. If we needed a test scheduled, it was only a phone call away. Very sad to lose such a great asset on Kaleb’s medical team.
Also, one of the lead researchers, Dr. Key, retired 2 years ago. He led the clinic in South Carolina where we spent many of our ‘vacations’ undergoing 3 full days of testing. It breaks my heart that his knowledge, caring and expertise is no longer available to patients with Osteopetrosis.
So, we’re kind of feeling like we are a fish out of water again….with no one with the appropriate knowledge or desire leading Kaleb’s care. Praying that a new doctor appears soon with the interest needed to help us solve this horrible disease.
Kaleb is now back in school, his sophomore year! He is developing into a young man that any mother would be very proud of and I am no exception. I could not ask for a better son and feel very blessed to have him in my life.
2011 has been filled with the deaths of many loved ones, starting in January with my dad’s death as a result of a broken neck in a car accident. My dad had suffered for many, many years from Osteopetrosis but did not complain one bit. He was 62 years old at the time of his death and had suffered from so many broken bones I cannot even begin to recount. The last 10 years of his life, osteomyelitis had become his unwanted companion and it caused him so much pain. He had gone to a world renowned hospital to have them examine his teeth and they decided to pull all the teeth and replace with dentures. Due to the disease, he was left with jagged fragments of teeth throughout his mouth and a mouth full of infection. No one would then begin to touch his mouth, as they didn’t know what to do with the mess that was left. And so, he was left to deal with osteomyelitis until the end of his life.
My heart hurts that he is no longer with us but each day that I begin to grieve for him, I realize that all the pain he suffered for all those years is now gone. He is now pain free for the first time and that brings me a lot of comfort.
At the time of dad’s death, we wanted to try to donate his body for research (specifically for Osteopetrosis). Due to the unexpected nature of his death, we were not able to donate dad’s body but since his death I have found that individuals can arrange to have their body donated to Indiana University Anatomical Education Program (http://anatomy.iupui.edu/anatomical-education/anatomical-education-faq/). I have filled out my form and have notified my family that at the time of my death, this is my ultimate wish. If it will help them learn about Osteopetrosis and prevent others from suffering as my family has, nothing could make me happier.
We are once again in search of doctors who treat Osteopetrosis. Kaleb’s neurosurgeon who has treated Kaleb since he was 2 is no longer practicing. He was our ‘go-to’ doctor who helped us immensely. If we needed a test scheduled, it was only a phone call away. Very sad to lose such a great asset on Kaleb’s medical team.
Also, one of the lead researchers, Dr. Key, retired 2 years ago. He led the clinic in South Carolina where we spent many of our ‘vacations’ undergoing 3 full days of testing. It breaks my heart that his knowledge, caring and expertise is no longer available to patients with Osteopetrosis.
So, we’re kind of feeling like we are a fish out of water again….with no one with the appropriate knowledge or desire leading Kaleb’s care. Praying that a new doctor appears soon with the interest needed to help us solve this horrible disease.
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