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.
tucked away on a mountain side
4 weeks ago