Ok, now taht the girls are napping I can fill everyone in. We are just so lucky to be here with 2 awsome Dr's who are extremely knowledgable and well trained. We get a "second" opinion on Robyn's care about every other month when Dr Cuenca takes over for Dr Jex while he is off somewhere else. Of course now that she is being deployed that will stop for a while, but it was great to have it. If we are still here when she gets back then she'll continue to be our back-up Dr.
Anyway. She did x-rays today to see how the bones in Robyn's feet look. Until now it really hasn't been an option since they were so small and still in progress there was basically nothing to see. Well, the left foot is really well corrected and ready for boots and bar, but because the right is so far behind she has to have a place holding cast until the right catches up. So, left is good! Right on the other hand is a mess. Still. As far as she can see her heel bone is not fused, but it is completely vertical still (it is supposed to be horizontal). The tenotony we did a month ago basically didn't help much at all. It wasn't a waste of time, but with her SHS the tendon just didn't lengthen like it was supposed to. She has extremely complet foot on the right.
Dr Cuenca thinks we have basically exhausted everything the casting is going to do at this point. She is going to talk to Dr Jex about doing a more major surgery in the next month or so. This surgery will realign bones, move and reattach tendons and basically rebuild her foot. Once that is done she will go into casts for another month for it to heal then into boots and bar with extensive physical therapy. She thinks we might get into boots and bar around her birthday (Wouldn't that be an awsome birthday present?)
She agrees with our assesment to try to get Robyn and I out to Philadelphia to see Dr Van Bosse as soon as possible. If we do go, it would be Robyn and I, Frank and 'Wenna would have to stay here (unless Frank can get a bit of leave and we would do a little mini vacation for the first few days, then they would come home and we would stay). I have no idea how long we would need to be in Philly or any idea when we would be going. All of that will be determined after Dr Jex gets back.
Anyway. She did x-rays today to see how the bones in Robyn's feet look. Until now it really hasn't been an option since they were so small and still in progress there was basically nothing to see. Well, the left foot is really well corrected and ready for boots and bar, but because the right is so far behind she has to have a place holding cast until the right catches up. So, left is good! Right on the other hand is a mess. Still. As far as she can see her heel bone is not fused, but it is completely vertical still (it is supposed to be horizontal). The tenotony we did a month ago basically didn't help much at all. It wasn't a waste of time, but with her SHS the tendon just didn't lengthen like it was supposed to. She has extremely complet foot on the right.
Dr Cuenca thinks we have basically exhausted everything the casting is going to do at this point. She is going to talk to Dr Jex about doing a more major surgery in the next month or so. This surgery will realign bones, move and reattach tendons and basically rebuild her foot. Once that is done she will go into casts for another month for it to heal then into boots and bar with extensive physical therapy. She thinks we might get into boots and bar around her birthday (Wouldn't that be an awsome birthday present?)
She agrees with our assesment to try to get Robyn and I out to Philadelphia to see Dr Van Bosse as soon as possible. If we do go, it would be Robyn and I, Frank and 'Wenna would have to stay here (unless Frank can get a bit of leave and we would do a little mini vacation for the first few days, then they would come home and we would stay). I have no idea how long we would need to be in Philly or any idea when we would be going. All of that will be determined after Dr Jex gets back.
There were 2 new Residents and a visiting Dr that all came to see Robyn today. Dr C asked me if they could see her and look at her films. I told her "They will never have the chance to be up close and personal to another case quite this unique again. Please, teach away!" I am of the mind that as long as the students are respectful, they need every chance to see everything they can. And Robyn is really one unique case.
Next we will move on to her knee which is not fused but has severe muscle and tendon constrictures. At this point her knee doesn't straighten beyond 90 degrees. So when we do the PT for her feet we will also do the PT for her knee. But that is for later.
Hi! I am soo glad you found me! I would love to hear more of Robyn's story! This is all so new to me and you for that matter that is it soo nice to have others to talk to! I feel like I have so many questions that I don't know where to start! What is AOF's? I still don't know all the terms! :) How is her range of motion in her joints? What kind of therapy are you doing with her? I could go on and on! Thank you so much for finding me and writing! Janessa
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