OT- Please join me in praying for DD8!!
Posted: Thu Feb 25, 2010 7:56 pm
Here's a copy of the email I've sent to our church family...
I would ask that you pray on behalf of my daughter, Kyber. She is 8-years-old and has Osteogenesis Imperfecta, better known as Brittle Bone Disease. It's a collagen disorder (collagen is the "glue" that holds your bones together and is a vital part in many other areas like skin, vessels, and connective tissues). We have been blessed in that it is a very mild case. She has had very few fractures, minor hearing loss, and beyond her hyper flexibility and thin skin, she is really rather healthy! At her last bone density screening, she had improved to the low-normal range (the year before, it was mild osteopenia, which is just a step above osteoporosis).
One of the fractures she has had was in her spine, and recently she started having some back pain. Today, she also fell and hurt her leg pretty badly so we went to get x-rays to check on both. He leg simply has deep tissue damage and swelling, no fracture. But, in her back, there is wedging in some of the vertebrae and very obvious osteopenia througout her spinal column. So, not fractures, but some damage.
As you can imagine, there are changes to be made for her now. She has been able to do anything other kids are allowed to do. Sports, rough house with her brothers, jump on the trampoline (that we just got for Christmas), and just be an active kid. She was about to start Ju Juitsu with Konor and was very excited and I almost put her in Upward soccer, but wanted the back x-rays first. My mommy heart wants her to have a normal life! I don't want to make her feel "sick" or "weak" by not letting her do anything. I want her to be able to play, to have her own "thing" like her brothers and other kids will. I wonder if she'll always be dealing with back pain? Will she be able to have a normal life at all?! Osteogenesis Imperfecta is known to have a "peak"-- it's like a bell curve. It's there, but mild or nearly unnoticable. Then it starts to worsen and the bones weaken and more fractures occur. Then eventually, is slows down and possibly goes completely away. I'm worried that this could be the beginning of her "peak".
We will be seeing her specialist as well as getting another bone density screening. Any sign of increasing spinal fractures and they will start her on IV treatments with Pamidronate, which is still somewhat experimental for children. Although it improves weak bones, it turns good bone into more of a chalk like substance. I'm not certain how long it will take to get an appt...it's at AR Children's Hosp, and it can take months sometimes.
I would ask that you pray on behalf of my daughter, Kyber. She is 8-years-old and has Osteogenesis Imperfecta, better known as Brittle Bone Disease. It's a collagen disorder (collagen is the "glue" that holds your bones together and is a vital part in many other areas like skin, vessels, and connective tissues). We have been blessed in that it is a very mild case. She has had very few fractures, minor hearing loss, and beyond her hyper flexibility and thin skin, she is really rather healthy! At her last bone density screening, she had improved to the low-normal range (the year before, it was mild osteopenia, which is just a step above osteoporosis).
One of the fractures she has had was in her spine, and recently she started having some back pain. Today, she also fell and hurt her leg pretty badly so we went to get x-rays to check on both. He leg simply has deep tissue damage and swelling, no fracture. But, in her back, there is wedging in some of the vertebrae and very obvious osteopenia througout her spinal column. So, not fractures, but some damage.
As you can imagine, there are changes to be made for her now. She has been able to do anything other kids are allowed to do. Sports, rough house with her brothers, jump on the trampoline (that we just got for Christmas), and just be an active kid. She was about to start Ju Juitsu with Konor and was very excited and I almost put her in Upward soccer, but wanted the back x-rays first. My mommy heart wants her to have a normal life! I don't want to make her feel "sick" or "weak" by not letting her do anything. I want her to be able to play, to have her own "thing" like her brothers and other kids will. I wonder if she'll always be dealing with back pain? Will she be able to have a normal life at all?! Osteogenesis Imperfecta is known to have a "peak"-- it's like a bell curve. It's there, but mild or nearly unnoticable. Then it starts to worsen and the bones weaken and more fractures occur. Then eventually, is slows down and possibly goes completely away. I'm worried that this could be the beginning of her "peak".
We will be seeing her specialist as well as getting another bone density screening. Any sign of increasing spinal fractures and they will start her on IV treatments with Pamidronate, which is still somewhat experimental for children. Although it improves weak bones, it turns good bone into more of a chalk like substance. I'm not certain how long it will take to get an appt...it's at AR Children's Hosp, and it can take months sometimes.
