Living with OsteoPETrosis (ADO) - From a Family's Perspective

Metabolic Bone Disease Clinic

2011-11-02T21:37:00.000-04:00

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.

The trials of 2011

2011-09-23T10:43:00.003-04:00

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.

Stop...smell the roses and ride a bike if you'd like

2010-04-07T20:22:00.006-04:00

Words cannot describe the excitement of watching a child, who has been confined to a wheelchair ride a bicycle. When Kaleb was a little guy, he rode his bike like the best of them. I remember how exciting it was to take off the training wheels. Then, the effects of osteopetrosis raised it's ugly head once again and let him confined to a wheelchair. It took us YEARS to realize what was occuring in his hips but the pain level was so intense, it didn't matter what the doctors told us, we knew we were in serious trouble. Needless to say, our days of bike riding were in the distance, not to be considered in our near future.

Seven years and LOTS of physical therapy later, we overcame the challenge on Friday and we watched with tears in our eyes when he successfully rode his new bike. We have looked for quite some time for a bike that would work well with the limited mobility in his hips. We found a "Low Rider" which ended up being a perfect fit. It allows minimal impact on his hips and the placement of the pedals allowed it to meet our unique needs.

Kaleb handles all trials and accomplishments with a large dose of grace. He tried to act like it was 'not a big deal' but in my mind, he has overcome yet another 'hurdle' that most of us take for granted. The little thing, like riding a bike, made this mom's day/week/month.

Thank you God for granting us the chance to see such a beautiful sight.

Lori

2010-01-05T07:46:00.004-05:00

Wow....it's been quite some time since I last updated the blog. I received an email from a parent of an 18 mo old that was recently diagnosed with OP. He found our site and contacted me which made me realize, I need to post an update.

2009 was a good year for the Davis family. Kaleb has continued with physical therapy and while he spends the majority of his time in the chair, he is walking short distances while on forearm crutches. His pain level from the hip is doing much better. He did have a few breaks this year including 4 ribs but they didn't keep him down too much.

A positive note for other OP patients, my cousin (in her mid 30s and also suffers from the dominant form) underwent a complete hip replacement. So far, she is doing well. This is what we will need to do after Kaleb's growth plates harden. Unfortunately, the dr who performed her surgery will most likely be retired by the time Kaleb is ready but I pray that he documented, documented, documented :)

On a note so positive note, Kaleb has made friends on xbox that have now become his friends on Facebook. While preparing to ring in 2010, I was downloading a couple pics of Kaleb from facebook and was APPALLED when I started reading some comments. His 'friends' decided it would be funny to post pics of Kaleb and write 'cripple', 'cripple from Ohio', etc. They posted a pic of a slinky going down the steps with the saying "Some people have no purpose in life other than to laugh when they fall down the steps" and wrote Kaleb's name under it. Ouch. Double ouch. I have to remember, kids can be immature and mean. Can I say ouch again???

Concerning OP, I have been contacted by quite a few new families in 2009, which is so scary to me. There is a family that lives within 10 miles of me that their infant was diagnosed. How scary. I can remember when we couldn't find another soul (other than my family) that had this disease and now it seems like it's everywhere.

I'm still learning that each day is a learning experience and though I can't understand this disease and why our family suffers from it, I know we are all learning, growing and sharing.

Peace to you in 2010. I know it's a common saying but truly, live each day as it could be your last.

Lori

Teaching the body to walk

2009-02-28T19:28:00.003-05:00

Life has been full since my last post. Kaleb is now a teenager. I just can't believe it! He is such a great kid. I know every parent feels that way about their own children but I just have to say, he is such a blessing in our lives.

We do have good news on many fronts. We went to Cleveland Clinic in September 2008 and we were told that Kaleb's hips are no longer showing signs of necrosis. They gave us the approval to undergo physical therapy and try to get Kaleb walking again. We have been going once a week to two wonderful physical therapists. They are motivating, encouraging and just a lot of fun to be around! Our goal is to have him walking 10% of the time and then once he's done growing, we may look into additional options for the hips, such as resurfacing. We'll see because you never know what advancements will be made in the medical community by that time.

Kaleb is enjoying the 7th grade. He's now in a completely accessible school and that has impacted his life in many ways. He is just 'one of the kids' now. He is able to get in the restrooms, the lunch lines, the gym, everywhere!!! His building is a two story building so we have worked with the school on emergency plans if Kaleb were ever on the 2nd floor and needed to quickly leave the building. The 2 custodians will come to Kaleb's room (after being radioed of his location) and remove him from the school. We're happy with that and glad to see them thinking of all possibilities.

I'm back to work now. It's been a blessing to have a job again and in this economy, we can all understand how thankful we are to have a steady income. As a parent of a child with a chronic, life long illness, I can say that it can drain the best bank accounts around. The bills do not stop. The $40 copays, and $2,000 per person deductibles. With the amount of visits Kaleb makes, it could kill a family quickly. We have received over $3,000 with of physical therapy bills alone since September! Can you even imagine??? It's amazing. But again, to end on a positive not, we are VERY blessed and thankful for the job to help with all those bills.

Blessings to all. If you or anyone you know is affected by osteopetrosis, please feel free to contact me at ldavi29@columbus.rr.com. I'd love to talk with you and learn from our combined experiences.

To work or not to work

2008-06-11T13:59:00.005-04:00

Most people in today's market do not have the choice of 'to work or not to work'. Unfortunately, our family is among that group that requires both parents working, just to make ends meet. Our dilemma arises when considering my employment options. Since Kaleb's diagnosis in 1998, I've tried to manage to work a professional career that required me to be onsite during work hours despite having numerous medical appointments for Kaleb and days where he was not able to physically move his hips. As a parent, I've had to make the hard choices of when to have to abandon my work responsibilities and stay home with a son who was experiencing pain that is comparable to bone cancer pain according to doctors. In my mind, it was the only choice I had.

My last attempt failed miserably and resulted in me receiving the 'firing' email indicating my services could no longer be afforded. Lori....fired. I never thought those 2 words would be said in the same sentence but I have to look at it like a lesson that God needed me to learn. I'm hoping I've been a good, humble student and I can soon go on.

We've worked out the school issues that had plagued us for the last few years and we know that the 'work' situation will also work out fine. It's just hard when you're undergoing the struggle to understand what the lesson is.

I'm definitely still 'working' but now it is in two antique stores (we just opened in the second on June 1st) and still doing web design. All 3 of these opportunities allow me to be there when we can but it is not mandatory. Kaleb goes with me to the stores and he's learning the good, the bad and the ugly of owning your own business. I also applied today to teach classes at a local college, as I've done in the past. I appreciate the 'flexibility' of working for yourself but also still feel the sting of how a chronic medical illness in a family can truly lead you down a different path. Thank goodness Mark has insurance through his work or else the pain would be much worse.

Blessings to all.

Lori

Bright spot of the winter

2008-03-24T23:42:00.002-04:00

It's been a very long winter. We've found that the winter is a cold, dreary time and that we are READY for spring. The bright spot of the last month is that we were able to get together with another child who has/had osteopetrosis. She had the 'recessive' form of the disease and underwent a bone marrow transplant and is now considered 'cured'. Before the 'cure', the damage was already done to her optic nerves and she is blind. WHAT AN INSPIRATION.

The cutest thing was Kaleb and her going down a long aisle together. Kaleb maintained himself and did not zoom away with her but carefully guided her down the aisle. I was very impressed and touched to the soul.

We watched her weave a basket! She is a testament that with the right attitude, anything can be accomplished.

I hope that everyone had a blessed Easter. Happy Spring!!!

Lori

Time flies....trials continue

2008-01-23T22:00:00.000-05:00

It's almost been a month since I last updated the blog. I apologize for the long delay. Much has happened...more than I can write in one blog. Most important, we have decided to utilize Ohio Virtual Academy (www.ohva.org) which is a public charter school for Kaleb. They provide the curriculum, a computer/fax/printer, state standardized testing, field trips, science fairs and much more. We are expecting we will start Feb 1 but we're still finalizing everything. This will allow Kaleb to stay home when needed due to his pain or inability to get the hips to move. I think it will be quite an adjustment for us since I just started working from home again on Dec 3 but we're game. We'll make it work and hopefully it will be quite beneficial to Kaleb in the long run.

Another interesting note, my right hip has decided it wants to start hurting quite a bit. Yes, I'm scared to death that the same thing that has happened to Kaleb's hips are now happening to mine but I'm going to choose to not worry continuously. I have to believe this will all work out, no matter how it is achieved :)

On a good note, I was contacted by two additional families in the last week concerning osteopetrosis. I think it's very beneficial to continue to communicate with others with this disease to continue to learn.

Blessings to each of you.

Lori

"It must suck to be in that chair"

2007-12-27T10:47:00.000-05:00

The title of this blog is "Living with Osteopetrosis" so I thought it was only fair to share all aspects of this disease. The thing about Osteopetrosis is that the patients 'look' normal. Normally, you cannot distinguish between an OP patient and a non-OP patient. Go to www.internationalosteopetrosisassociation.org to see 3 boys on the page, and try to pick the 2 that suffer from OP. It's a hard thing to do. With Kaleb, it's different because we have this bright red chair that goes along with us and makes many people STARE like they've never seen a chair before.

Kaleb is on Christmas break so yesterday my mother and I took him to the Newark square and went into many of the little shops. We haven't done that for a long time and thought it would be nice to 'get the stink blown off him' as my mom would say :) We went into a couple shops that we couldn't get any further than the front door so we smiled and left. It's amazing to discover the non-handicap accessible places and normally you wouldn't even think about it, if it weren't for that darn chair :)

We end up sitting down for lunch and a little boy (about 5) comes up to our table. He is staring at Kaleb's chair and he loudly states, "It must SUCK to be in that chair". It embarrassed Kaleb and he put his hood up on his head (as though that would make him disappear). I promptly say "well...at times I'm sure it does..BUT there are good things too...like when we go to the mall and I'm tired of walking, Kaleb is still rearing to go". This makes the little boy laugh and he then tells us that he would just LOVE to do wheelies in Kaleb's chair. This makes Kaleb giggle a little and finally his hood comes down. He and the boy talk a little and we go on and have our dinner.

I wasn't upset at all at this boy's revelation but was glad he left feeling like Kaleb wasn't living a life that sucked.

After 2 years of dealing with the chair, we are more 'accustomed' and it has 'become part of our lives'. But there are still stark reminders that the chair is noticed and it does cause some thinking outside the box. For example, how many parents would like to go to their son's Christmas program and never be able to see his face during the performance (actually, never see him) because they put the elves in the front row standing and dancing. And you know the sad thing, is I don't think one other person in that auditorium noticed other than me, my mom and Mark. Everyone else was happily smiling proud smiles watching their children dance, twirl and run across the stage. Oblivious.

This is just one example of 'living with osteopetrosis'. This doesn't mention the excruiating bone pain that is hard to relate to unless you've seen it in full action. That will be another post, another day.

Until then, we're going to Dresden today to pass out business cards and hope that we are able to make it through the aisles successfully.

Blessings to all.
Lori
www.loridaviswebsolutions.com

Positive Osteopetrosis stories

2007-12-25T19:40:00.000-05:00

Merry Christmas to everyone and many blessings for 2008.

I wanted to share some sites that I've found recently regarding Osteopetrosis patients. First, I found of a woman in California who overcame her struggles with OP and started Laura Burch Artworks - http://laurelburch.com/index.html. She created beautiful products that were very vivid in color and design. Unfortunately, Laura passed away in September 07 but her memory will definitely live on through the products she has created. The About Us page indicates she left her tumultuous home at the age of 14 with a paper bag of clothes and Osteopetrosis. I cannot imagine :(

Also, I found a brief article on a 13 year old boy that is now blind due to OP and he has 2 pieces of artwork in a show in October 2007. The article does not show his pieces of work and I quickly searched for more info but didn't find yet. Take a look at http://www.ocregister.com/ocregister/healthfitness/article_1889520.php for more info.

I just wanted to share these stories b/c they have been very uplifting to me. I don't know any details about either of these 2 people but I think it's great they were successful in overcoming the many obstacles OP brings.

Blessings to each of you.

Lori

Christmas Day is coming!

2007-12-23T13:32:00.000-05:00

We're all preparing for the upcoming holidays and the hustle and bustle is in full swing. I ask that this Christmastime, you take time to remember those less fortunate or enduring the fight of their life.

Once upon a time, back in 1995, I was still a naive 23 year old believing that I would have my baby boy in a few months, and life would be grand. We were very anxious and eager to celebrate his entrance into this world. Little did I know what the next 10 years would be like, the procedures, the doctors, the tears, and the struggle.

Due to our experiences, we have had the 'awesome', yet heart wrenching opportunity to meeting many, many families who have suffered from "osteoPETrosis" - both the recessive and dominant forms. We have lost many little heros to this disease and to this day, we're watching others fight this same fight. I ask that you lift up each little soul that suffers from all forms of Osteopetrosis. Below are links to the current troopers and their situations. Please leave a post on their guestbooks and let their families know they are NOT alone. Even though it is a rare disease, it is one that greatly affects many lives.

Blessings to each of you as you celebrate Jesus' birth.

www.caringbridge.com/visit/babygavinw - Team Gavin - underwent BMT on 12/20
http://www.caringbridge.org/visit/tigerlilly - TigerLilly - underwent 2nd BMT on 8/31/07

I also ask that you keep Nate's family in your prayers. Nate lost his battle 9/22/06. He is truly an angel, as you will see on his page. His family welcomed in Hans on 8/30/07. When I opened my Christmas boxes this season to bring out my ornaments, I saw the angel that Elly created in memory of Nate and the tears flowed. Rest in peace, sweet Nate. http://www.caringbridge.org/fl/nate/

There are so many others that are fighting now or are serving as angels. A prayer from each of us may make all the difference in the world.

Many blessings to each of you during this Christmas season.
--Lori

What is Osteopetrosis?

2007-12-02T01:04:00.001-05:00

Little did I know growing up the effect that bones would have on my life. I knew our family broke bones but I didn't understand any more than that. Our family did not realize or appreciate the impact this inconvenience would end up having on generations to come. We always put a cast on, the bone healed and off again we went. And then I learned the name, OsteoPETrosis and began to realize, I was very thankful for my ignorance. The ugliness of this disease has been made clear throughout my son, Kaleb's, life. Since 4 months of age, the disease started to show it's signs in my son but due to the lack of knowledge both on my part and on the doctors part, we did not realize we were being shown signs of such a DEVASTATING disease. One of the best terms I've seen used to describe this disease is OsteoATROCIOUS. It truly is atrocious.

For a disease that is considered benign, I have lived through it's many complications from the eyes of a mother, daughter, sister, granddaughter, niece, and cousin. It has driven me to spend endless hours researching on the internet. Looking for the answer to this disease. Wondering if a cure will be found in my life or if research will provide the medical advancements necessary to get Kaleb up walking again. I cannot begin to describe the pain that our family has experienced due to this benign disease. We have spent hours listening to a child scream out in pain because the pain in his 'hip' felt like a stabbing knife. Words do not portray the picture properly. The scars are visible and real BUT the emotional scars are well hidden. This disease itself could be considered a hidden disease. From the outside, to look at a patient with Osteopetrosis, there are no visible signs. Patients look like normal, healthy individuals because the problems are occurring down deep in the skeletons.

We realize we have no choice but to continue to fight and look for the answers we and so many other families so desperately need. But as a mother, watching this disease, I have to say, it is a heart wrenching, relentless disease. It shows no mercy. It cripples, incapacitates, causes blindness, deafness, severe bone pain (compared by doctors as intense as bone cancer pain). This disease has impacted our minds, our sense of hope and our 'dream' for the normal family. I can say that because of OsteoPETrosis, my life is a much different life than I once imagined.

This disease is very rare and therefore, does not warrant the attention as other 'serious' diseases such as cancer or diabetes or AIDs. But the effects of this disease, one that attacks the skeletons, the eyes, the ears, the liver, the spleen and many others areas is just as real and just as painful. The dominant form of this disease may not be fatal, but it is life altering and lifelong. We realize that the problems we currently have that seem hard to carry, may only be the tip of what we may be forced to deal with in the future. Sounds a little depressing, doesn't it?? That is why the creation of the International Osteopetrosis Association is so important to OUR family, Mark, Lori and Kaleb Davis. We are just one of many families that the research provided by this groups funding will directly impact and we are very thankful for that.

We were very honored to be invited to the 1st Annual Halloween Gala to support the International Osteopetrosis Association. This association is a sign of hope for the families afflicted by this disease and the money raised will be used for research of osteopetrosis. We went to put a face with this disease. When you look at Kaleb, you can see the sparkle in his eyes. He is such a joy to everyone he touches and we need to continue to fight for his healthy skeleton. We need more research on this disease, to give these kids a chance for a healthier future.