Sometimes I just want to curl up in the corner and have a good cry. I wonder why it is that Laura must endure so much. I wonder why she had to not only have all of the gastric issues, oxygen issues, and eating problems but clubfoot on top of it all. I wonder why it is that after all we've done to assure she'd have the best little feet she could that we're still dealing with problems. Why? Why??? Oh wait, now I'm starting to sound like a three year old. I guess I'd better grow up a few years and just handle it. After all, she's here. She's normal. She's full of joy and laughter. This is what is important.
When we knew Laura would be born with bilateral clubfoot we researched what that really meant for her and how we might handle it. With the persistence of very caring parents we found Dr. Ponseti and his method where her feet could be corrected without surgery. We interviewed Drs and found one we thought would be great for us and felt quite comfortable when she was born with our plans. We weren't prepared for all of the other issues she faced and found ourselves pushing her feet to a lower priority as we prayed for her other, more immediate needs.
Her precious feet were classified as "atypical" relatively early in the process. This meant she would have a few more challenges in correcting them than the norm, but we figured that it was just Laura's way. After all, she certainly managed to do everything else the hard way so why should this be any different?! :) We did everything we could to keep her from having surgery above and beyond the typical tenotomy. We even trucked her out to Iowa to see Dr. Ponseti himself for over a year. Finally, even he couldn't figure out why her left foot just could not be corrected and cautioned us that she might have CP. I can't tell you how that possible diagnosis effected us but you can imagine it wasn't good. We had already seen a neurologist who had run an MRI that indicated she was fine. At least at that point. Her therapists, who saw her weekly all said she didn't have CP and even our ortho said that he didn't think so but if she did, it was only so slight that she'd be fine and lead a normal life. If we could just get her little left foot to correct.
Her first visit with Dr. Ponseti:
Finally we opted for the ATTT surgery on that foot. It went well and we were happy with the results. However, her foot kept 'sliding off the fat pad'. We tried several things to fix that and the right foot complied. The left foot didn't. After a year of that she finally received the next in what we've come to realize may be a long line of diagnoses regarding her feet. We sometimes wonder if it will ever end. We know her foot is unusual and that most clubfoot kids do just fine with Dr. Ponseti's method of treatment to achieve a perfectly corrected foot. We've come to realize that no matter how stringent we were with the FAB, her feet just aren't fitting in any mold known so far. So we must once again make a difficult decision.
Laura in casts as she has been on and off since birth:
Next week Laura will be fitted for an AFO for her left foot. I have resisted this option until it no longer makes sense to do so. Normally AFO's are not appropriate when using Dr. Ponseti's method. But then Laura isn't following the norm. So we'll be giving this a try until she's ready for what we hope is the final surgery on her feet. Apparently, with the diagnosis of hindfoot varus, her foot will need a surgery to correct that if she's to stand straight without a brace and without wearing out the other bones in her feet due to the awkward stance. We'll cross that bridge when we come to it. Meanwhile, I'll work on dealing with the AFO. I pray a minimal one is all that will be needed.
I'm sure I'll wonder why all of this had to be Laura's lot in life many more times before she's grown in to a wonderful young woman. But I'm also going to remember to thank the Lord along the way that she's the intelligent, loving, funny kid that she is. We really can't ask for more than that!
When we knew Laura would be born with bilateral clubfoot we researched what that really meant for her and how we might handle it. With the persistence of very caring parents we found Dr. Ponseti and his method where her feet could be corrected without surgery. We interviewed Drs and found one we thought would be great for us and felt quite comfortable when she was born with our plans. We weren't prepared for all of the other issues she faced and found ourselves pushing her feet to a lower priority as we prayed for her other, more immediate needs.
Her precious feet were classified as "atypical" relatively early in the process. This meant she would have a few more challenges in correcting them than the norm, but we figured that it was just Laura's way. After all, she certainly managed to do everything else the hard way so why should this be any different?! :) We did everything we could to keep her from having surgery above and beyond the typical tenotomy. We even trucked her out to Iowa to see Dr. Ponseti himself for over a year. Finally, even he couldn't figure out why her left foot just could not be corrected and cautioned us that she might have CP. I can't tell you how that possible diagnosis effected us but you can imagine it wasn't good. We had already seen a neurologist who had run an MRI that indicated she was fine. At least at that point. Her therapists, who saw her weekly all said she didn't have CP and even our ortho said that he didn't think so but if she did, it was only so slight that she'd be fine and lead a normal life. If we could just get her little left foot to correct.
Her first visit with Dr. Ponseti:
Finally we opted for the ATTT surgery on that foot. It went well and we were happy with the results. However, her foot kept 'sliding off the fat pad'. We tried several things to fix that and the right foot complied. The left foot didn't. After a year of that she finally received the next in what we've come to realize may be a long line of diagnoses regarding her feet. We sometimes wonder if it will ever end. We know her foot is unusual and that most clubfoot kids do just fine with Dr. Ponseti's method of treatment to achieve a perfectly corrected foot. We've come to realize that no matter how stringent we were with the FAB, her feet just aren't fitting in any mold known so far. So we must once again make a difficult decision.
Laura in casts as she has been on and off since birth:
Next week Laura will be fitted for an AFO for her left foot. I have resisted this option until it no longer makes sense to do so. Normally AFO's are not appropriate when using Dr. Ponseti's method. But then Laura isn't following the norm. So we'll be giving this a try until she's ready for what we hope is the final surgery on her feet. Apparently, with the diagnosis of hindfoot varus, her foot will need a surgery to correct that if she's to stand straight without a brace and without wearing out the other bones in her feet due to the awkward stance. We'll cross that bridge when we come to it. Meanwhile, I'll work on dealing with the AFO. I pray a minimal one is all that will be needed.
I'm sure I'll wonder why all of this had to be Laura's lot in life many more times before she's grown in to a wonderful young woman. But I'm also going to remember to thank the Lord along the way that she's the intelligent, loving, funny kid that she is. We really can't ask for more than that!
Posts
No comments:
Post a Comment