I honestly have no clue how to write all this out so I will attempt my very best…
Sadie’s first injection of Humira went much better than expected. Yes, it hurt, but she said not at all as bad as injections she remembers from years ago. Round two of that is coming up soon.
Sadie saw Dr. M (the surgeon) today and as expected he did recommend another surgery. As Dr. M put’s it “it isn’t a matter of if, it’s a matter of when”. The reason he said that is because none of Sadie’s options are ideal for someone her age and the very best thing would be to prolong any of the options as long as possible. The first surgical option would not be a guarantee… they would cut part of the calcanus bone (the heal bone) and move it back over the correct position (right now that bone is aligned under her ankle when it should be aligned with her tibia – most if not all of the pain she is dealing with is due to an impingement that is caused by this bone, and a few others, that are not in their proper position). There is no guarantee if the bone would stay where placed… could stay that way for good, could slip back in a month… we wouldn’t know until we tried.
My question for Dr. M was “knowing all you know of her case, where do you see her in the future and is this proposed surgery just a band aid for something bigger down the road and if so, why put her through a maybe?”. His answer was… he believes that it is just a matter of time before Sadie needs to have her subtaylor (the joint that allows your ankle to move side-to-side) fused. He hesitates to do this because “fusing the subtaylor is proven to put a lot of stress on the ankle joint (the joint that allows your ankle to move up and down) which causes the ankle joint to require fusing also. Fusing the ankle joint often puts stress up stream, meaning knee, hip”. He further explained that it is very clear that Sadie’s ankle joint is all ready under a lot of stress, so to fuse the subtaylor will lead to the requirement of fusing the ankle probably sooner than later. I followed this with asking what happens to range of motion when the ankle joint is fused? His response “it is life changing”. All that said… Dr. M feels the fusion is more likely the better direction HOWEVER, he asked Sadie to try ONE more option to hopefully buy her some time.
Sadie was fitted today for a large brace, I say large because she has worn orthotic braces in the past, but usually ones that only come above her ankle. This time she is going to wear one that cuts at the knee. The goal of this is to make the brace custom to fit Sadie after someone holds her ankle in a more “proper” position by manipulating the calcanius bone into the proper location. This brace will cause Sadie to have little to no movement in her subtaylor joint, but hopefully will cause the bones that are meeting due to deformity to no longer touch. IF this brace works, it will buy Sadie time. The brace will not be here for a few weeks and once fitted for this she will visit with Dr. M again. AT that point we will find out if she has to wear this 24hours a day or if she has the ability to remove it for sleeping, home, etc. The brace is big, it is going to be uncomfortable and anyone that knows Sadie knows that she would rather not draw attention to herself. It was a hard day for Sadie to have to be fitted for this but to also know that her ankle is in such a way that it WILL require a much larger surgery at some point. She is not interested in that option as you can imagine.
Sadie has one further PT appointment before the New Year and then it looks like she has a week off from appointments!
This is kind of where things stand for the time being. We will get the brace right after the new year and then she will give it the 30 day trial run she agreed to.
Obviously you can pray for her physical health, her spirits, a miracle healing.
Our family would like to just take a moment to thank everyone for their prayers and support over this last year. Sadie has really had a fabulous year growing from a girl to a young lady. She is a huge joy to our family and a blessing to many who know her. We know there are so many needs in this world that can use your time and prayer and we feel humbled and blessed that you have diligently kept Sadie close to your thoughts, prayers and hearts. We wish each and everyone who reads this, regardless of how well we know you, a very Merry Christmas. We pray that in 2010 you grow closer to the Lord and have ears to hear his calling for you. Thank you from the depth of our hearts!
Love, The Jordan Family
Sadie’s first injection of Humira went much better than expected. Yes, it hurt, but she said not at all as bad as injections she remembers from years ago. Round two of that is coming up soon.
Sadie saw Dr. M (the surgeon) today and as expected he did recommend another surgery. As Dr. M put’s it “it isn’t a matter of if, it’s a matter of when”. The reason he said that is because none of Sadie’s options are ideal for someone her age and the very best thing would be to prolong any of the options as long as possible. The first surgical option would not be a guarantee… they would cut part of the calcanus bone (the heal bone) and move it back over the correct position (right now that bone is aligned under her ankle when it should be aligned with her tibia – most if not all of the pain she is dealing with is due to an impingement that is caused by this bone, and a few others, that are not in their proper position). There is no guarantee if the bone would stay where placed… could stay that way for good, could slip back in a month… we wouldn’t know until we tried.
My question for Dr. M was “knowing all you know of her case, where do you see her in the future and is this proposed surgery just a band aid for something bigger down the road and if so, why put her through a maybe?”. His answer was… he believes that it is just a matter of time before Sadie needs to have her subtaylor (the joint that allows your ankle to move side-to-side) fused. He hesitates to do this because “fusing the subtaylor is proven to put a lot of stress on the ankle joint (the joint that allows your ankle to move up and down) which causes the ankle joint to require fusing also. Fusing the ankle joint often puts stress up stream, meaning knee, hip”. He further explained that it is very clear that Sadie’s ankle joint is all ready under a lot of stress, so to fuse the subtaylor will lead to the requirement of fusing the ankle probably sooner than later. I followed this with asking what happens to range of motion when the ankle joint is fused? His response “it is life changing”. All that said… Dr. M feels the fusion is more likely the better direction HOWEVER, he asked Sadie to try ONE more option to hopefully buy her some time.
Sadie was fitted today for a large brace, I say large because she has worn orthotic braces in the past, but usually ones that only come above her ankle. This time she is going to wear one that cuts at the knee. The goal of this is to make the brace custom to fit Sadie after someone holds her ankle in a more “proper” position by manipulating the calcanius bone into the proper location. This brace will cause Sadie to have little to no movement in her subtaylor joint, but hopefully will cause the bones that are meeting due to deformity to no longer touch. IF this brace works, it will buy Sadie time. The brace will not be here for a few weeks and once fitted for this she will visit with Dr. M again. AT that point we will find out if she has to wear this 24hours a day or if she has the ability to remove it for sleeping, home, etc. The brace is big, it is going to be uncomfortable and anyone that knows Sadie knows that she would rather not draw attention to herself. It was a hard day for Sadie to have to be fitted for this but to also know that her ankle is in such a way that it WILL require a much larger surgery at some point. She is not interested in that option as you can imagine.
Sadie has one further PT appointment before the New Year and then it looks like she has a week off from appointments!
This is kind of where things stand for the time being. We will get the brace right after the new year and then she will give it the 30 day trial run she agreed to.
Obviously you can pray for her physical health, her spirits, a miracle healing.
Our family would like to just take a moment to thank everyone for their prayers and support over this last year. Sadie has really had a fabulous year growing from a girl to a young lady. She is a huge joy to our family and a blessing to many who know her. We know there are so many needs in this world that can use your time and prayer and we feel humbled and blessed that you have diligently kept Sadie close to your thoughts, prayers and hearts. We wish each and everyone who reads this, regardless of how well we know you, a very Merry Christmas. We pray that in 2010 you grow closer to the Lord and have ears to hear his calling for you. Thank you from the depth of our hearts!
Love, The Jordan Family
Sadie, We are continually praying for you, and we love you a whole lot! Mr. C
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