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.
Saturday, February 28, 2009
Wednesday, June 11, 2008
To work or not to work
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
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
Monday, March 24, 2008
Bright spot of the winter
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
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
Wednesday, January 23, 2008
Time flies....trials continue
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
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
Thursday, December 27, 2007
"It must suck to be in that chair"
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
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
Tuesday, December 25, 2007
Positive Osteopetrosis stories
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
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
Sunday, December 23, 2007
Christmas Day is coming!
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
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
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