Wednesday, July 02, 2008

Passionate About Feet!

Okay, okay. I'm not talking just any feet. I'm talking about clubfeet. Ones that need the correct treatment in order to walk down that aisle someday with pain-free, straight feet. I've learned over the years that those who become well versed in whatever disease, disability, or birth defect one might have and learn to successfully treat it without invasive procedures successfully become virtual zealots, encouraging other parents to follow in their path. I think I've finally gone over the clubfoot edge. And I think that's a good thing.

For several years I've been a part of the nosurgery4clubfoot yahoo group. It is made up of dedicated Moms who are spreading the word, those in the midst of treatment, and those looking for answers for their unborn child or perhaps one who is being adopted or has relapsed at an older age. Because of that group, I have closer communication with some of the dedicated, experienced Moms and I try to do my part to help when I can.

That help has been in waves. Sometimes we are concentrating so hard on what is best for Laura, it is hard to see what might be best for others. I've always been glad that the other experienced Moms were so dedicated that they could help families, and I've looked forward to the day when I could relax and feel just as passionate as they do. I think my time has come.

Last week I came across a blog written by a Mom who has a daughter with clubfeet. I read a few posts and felt that I needed to do something to help them get on the right track. A lot of Ortho Specialists claim that they are doing the Ponseti Method to correct clubfeet, but sadly they aren't. They might have been trained by him, they might have read his books and used his handbook, and they might have a great reputation as being the best in their area, but they deviate because they think they know more than 50 years of research shows. They become lax and either increase the chances of doing something wrong to a child's foot, or they greatly increase the chances of a relapse. Big Time.

So I began praying for this family. Hoping and praying is more like it. And I realized I'd just crossed the line in to the passionate, dedicated clubfoot Mom. It amused me and caused some anguish at the same time. What would become of me? Would I turn out to be one of those Moms who didn't listen and just tried to shove the correct Ponseti method down other parents throats? Would I get a cheerleaders outfit and do my thing from the sidelines? Would I think of nothing but clubfeet???

No. I don't think so. My Mom shares with me periodically about how great it is that we have contact with so many people through this wonderful technological medium and she is constantly amazed at what can happen through email and now blogs. So I figure I won't change much on the outside. I'll just keep better track, develop simple, calm answers to questions parents post and do my best to see that they are getting the best care they can for their children. And I'll pray a lot more for families I don't even know. I'll be praying that they have ears to hear and a heart that is open to doing something different if it means their child will have greater success with their feet. I'll be praying that they will be willing to do what needs done no matter how far they have to drive or how many phone calls they'll have to make to their insurance company as a result. And I'll be praying for Dr. Ponseti. He is a wonderful, calm, healthy 94 and we need him around for a few more years. But he also needs the Lord. I'll also be praying for Dr. Dobbs. He's seeing more and more patients who need help after someone else has had their hands on those precious feet and he needs wisdom as he deals with more and more unusual cases.

Prayer. Who knew it would be a part of experienced, dedicated, zealous clubfoot parents trying to spread the word. I guess I should have known all along. Certainly Laura has had her share of prayers said over her from day one. And look at her. Who would ever know that she was supposed to be long gone by now. Prayer works. And along with Dr. Ponseti and Dr. Dobbs, who knows what might come if it? I smile when I realize I know. And I hope that I can pass on that legacy to Laura someday.


Sue said...

Thank you, thank you -- in such a short time, you've been an incredible blessing to me through your prayer, ministry, and concern. Some might think this was all "coincidence," you and other moms just stumbling upon my blog ... but I don't believe that. I do believe this is how God can work, placing people on the path to help guide and direct. Clearly, after our dr. visit on Monday, we do need direction, big time! I hate feeling that we've been doing wrong by our daughter, but I don't want to think that either, necessarily. This dr. served his purpose in Grace's life, but now clearly, after the appt., we need to look elsewhere. I thank you for giving me the courage to start looking, and thinking ...

Is there any way to communicate other than through each other's blogs? I do have a lot of questions ... like what do you think of her latest diagnosis, that 4 months of stretching constantly should do the trick and avoid casting? Other moms have written too -- one in particular shares a VERY similar story to mine and I would like to contact her as well somehow. If you have a way I can email you or something I'd appreciate it. I do see a little box below here that says "email follow up comments to ..." Maybe that's a route?

Anyway, thanks again, Chris, for your prayers. We have been through some pretty serious stuff over the past few years -- clubfoot being one part of the journey -- and prayer is one of the things that has kept us going. I am grateful for your passion! Looking forward to "talking" to you again soon.

PS - is there a list of reputable doctors that you could recommend? I know some dr. from Philly (Shriner's) has been mentioned but we'd rather stay in NJ if we can. I'm just not sure who to trust anymore. Thanks.

Chris said...
This comment has been removed by the author.
cheryl Schalk said...

Hi I love your blog and how you are passionate about feet. I understand your pain about how difficult it is to manage club feet. I think people dont realize what a huge issue this is for a family. My daughter has a club
foot on the right foot. I saw that you are familiar with Ponsetti and how some docs think they are doing it, but not really. The Ponsetti has only really become the standard on clubfeet management in the last five years despite 50 years of research. I know the doctor in Philly who is doing the Ponsetti at Shriners. He just relocated there from NYU Hospital for Bone and Joint Disease.
He did his residency with Dr. P and he is the guy you want for your daughters feet if you are in a reasonable distance. I am involved with an online support group and he is one of our board members because of his dedication to pediatric orthopedics. He just came to our convention in Col. Oh. Our support group talkes alot about club foot and management. We ae an online support group and talk online alot about clubfoot. I cannot say enough about how kind man he is. His name is Dr. Harold van Bosse. Google his name. contact me if you need to.

phyllis said...

Thank you for sharing your blog. I think I must have been covered somewhere in your prayers. I'm Phyllis, I'm from Singapore and my daughter, Claire, has bilateral clubfeet. While we have no ponseti certified doctors here, everything went well in her treatment till I had to fit her with the Foot Abduction Brace. (I've sent Dr Ponseti photos of her corrected clubfeet and he's verified that they are well corrected). The hospital didn't know that the Mitchells exist. They gave her curve shoes and a bar that was far too short. Thanks to all the help from the yahoo groups, I got the Mitchell's for her and she's doing great in them. Thank you so much for your prayers. Phyllis

D.P. said...

I wish I would have found your blog a year and a half ago when I was pregnant with my little guy. I had so many questions about club foot and spent so many sleepless nights doing MOUNDS of research on my own - with him being my 4th child you can imagine how exhausted I was!

I documented the first year of Ponseti and am looking forward to making many more updates. There's just not enough resources out there about what comes next.