Saturday, January 31, 2009

Looking for a new plan

I need a plan.

I feel that we have come to a crossroads in Matthew's treatment and I need a plan...any plan. Feels like right now everyone is just sitting back waiting for his foot to regress to the point where they can do surgery again. Maybe that is not how they are treating it, but it is how I feel it is being treated. His surgeon doesn't want to see him for another 5 months. His p/t has told me that she feels the tendon transfer surgery is rarely successful... but then also admitted that perhaps because of her profession that she only sees the failed surgeries. His orthotist made an AFO that he rarely makes for children. All of these point to the wrong ending in my book.

The last time I felt like this was almost 6 years ago. Matthew was 4 months old and I was unsure. I looked at his foot and it did not look right. Correction. That is what I told everyone else. What I said to myself is his foot looked dead. I never used those words outloud though. Felt really odd to say that a part of your 4 m old miracle baby looked dead, so instead I told everyone it didn't look right. Looking back, I was seeing the drop foot aspect that no one else saw until he was 15 m old.

So the last time I felt like this, I emailed Dr. Ponseti. I sent photos and asked what he thought. Of course, back then we all thought we were dealing with a regular clubfoot. Dr. Ponseti sent contact information within 24 hours for a doctor in Vancouver. Vancouver is a one hour flight from here. I sent an email to Dr. Pirani in Vancouver. He called my house later that evening and invited us out to his clinic the following Monday. As luck would have it, a Calgary doctor was studing his techniques the day we showed up and took over Matthew's care.

So, I am getting that feeling again. That something is not right. That something else needs to be done. I think I will email Dr. Ponseti again, if he even answers emails anymore. He was no spring chicken the last time I contacted him.

But I am afraid to.

I am afraid that he will send us to Vancouver where Matthew will be serial casted again. I know, I know. It would be for his own good and isn't a different plan what I am looking for? It is just that Matthew in a full leg cast that he could not run, jump, leap, climb, and be a daredevil in would be pure hell for him, and anyone around him.

Also, I am afraid that it will be the answer to the imediate regression, but not the endless regressions. That we will find ourselves in the same position a year or two later.

So, instead of emailing, I spent some time yesterday signing up with the nosurgery4clubfoot yahoo group. And a few other clubfoot groups as well. Still waiting membership approval for the clubfoot canada group which I really want to take a peak at. When I belonged to those groups 6 years ago, there were only 2 Ponseti trained doctors in Canada. I am hoping for a few more by now.

I am hoping to chat with a few others who may have found themselves in similar situations. See what road they are on. See if we should follow, or if we need to find our own path.


MamaJenn said...

I hope you are able to get some good info from those groups. Try to not be afraid of what an email from the DR. might say, but know that it could spell a positive result in the long run. I know this may not help, but you know I will offer whatever support I can. Call me if you need to.

Always A Party..... said...

I'm sorry you are feeling like thi Joanne, I know it's not easy.

I'm sure you will get some advice from the groups you are looking into and I would think there should be more Dr. out there now.

Sara said...

I am glad you have joined those groups. I hope you find what you need with them.

I think Matthew would find ways to be a daredevil no matter what.

I'm thinking positive for you as always.

Sue said...

My spine is tingling as I read this post -- and not necessarily in a good way, but in an "I SO GET THIS!" kind of way. All of the things you've been through ... so much doubt! There's not a whole lot worse than being in the "expert" care of someone who doesn't seem to know what's going on with your precious child. It's a heart-dropping feeling.

I will never stop being amazed at how a mother just KNOWS something is wrong. Seriously. I never really experienced this much myself until Grace came along, my child with a "problem." Every step of the way, I just KNOW. I never trusted that, though, until I joined the clubfoot group. I had parent after parent after parent say, "Trust your instincts -- they're always right!" Sure enough.

You experienced this in a profound way when M. was an infant. You just KNEW. I experienced this in a huge way with Grace when she turned 2. Unfortunately, we had started out with a doc who "said" he was a Ponseti-follower but then promptly said he does his own thing b/c he has greater success than Dr. P ever did. At the time, we knew nothing of Dr. P -- we just trusted this guy completely. As we went along, though, my gut kept screaming -- something's not right! But I didn't listen -- what do I know, right?

But then when Grace turned 2 it was summer and she was barefoot all the time. I just KNEW, in that mother-way, that she was relapsing. I was completely and utterly convinced and I was terrified. But no one else saw it, not even my husband. I don't fault anyone -- it's a mom-thing! Finally, after about 2 months, my husband noticed, and then my parents. But the one person I could NOT convince was her doctor. He basically told me I was overreacting, and that I had just better get used to the fact that my daughter will never be 'normal' and this is what her foot will always look like. Sorry ... NO WAY.

We sat on this horrible relapse for a year, our dr. refusing to listen to me. This past Aug. we switched to a true Ponseti doc, went through serial casting (and I had ALL the fears you wrote about!!!!), etc. -- and now it's just amazing. I do still freak out (I blogged about that today) but my goodness, it's just all pretty uncanny.

sorry that was so long -- I just wanted to share a bit of our story with you and encourage you along your uncertain path. While our experiences are different (we're not dealing with any nerve damage), I was in the exact same spot as you are just a few short months ago, so I truly know what you're feeling! Hang in there, and if you need anything at all I'm only a blog away! :)