An new orthopedist and some new hope....

Our orthopedist has been wonderful. She has worked very very hard on Owen's clubfoot. She is the doctor that, when he wasn't gaining weight, sent us to check out his lungs because if a baby is trying too hard to breathe and expending that energy and burning those calories, you may have a problem. And he did, hence the VEPTR surgeries. She also casted Owen 3 times weekly for his clubfoot and she would see us quickly if she knew that we had other places to be, which is priceless on a busy appointment day. I am glad we started this journey with her.

But, as I have been writing lately, I am frustrated. I am especially frustrated because I can see that I have a child who already wants to walk and stand and we haven't gotten very far with his legs and feet. This is not for lack of trying, but Owen's body is tough. It's rigid. It likes to curl up and tries at every turn to get back to curved. And I was and have been a proponent of conservative therapy. However, there comes a time where you have to make a judgment call. Do I continue to treat conservatively and maybe get no where and push potential surgeries off? Will it finally work and I will be thrilled we kept at it? Do I opt for surgery so that he has a shot at walking at an early age? Do I take the chance, not operate for a while and while he get stiffer, run the risk of losing some functionality of both his knees and feet? Do we do surgery that basically guarantees that he will have arthritis problems and pain later in life? What do I do????

Our orthopedist had to go on medical leave for a while. In the interim, she said we should see another orthopedist and I did. It's the ortho that I wanted to see from the beginning who specializes in Arthrogryposis. However, he is the ortho that does not take our insurance and I knew when Owen was 6 days old and I called, that I would be racking up bills in the hundreds of thousands for orthopedic care only. To give you an idea- Owen's last VEPTR bill was for $175,000.00. That does not include the doctors fees. So, I knew I couldn't swing it. However, now he will accept what our insurance pays so long as we have met our deductible. We meet our deductible around the end of January now.

So we see him yesterday. He walks in and we go over all of O's issues. He tells me about how many children he sees with Arthrogryposis. We have a laugh over the fact that I am a medical malpractice attorney (he asked what I do and I don't keep it from them ever). Then he touches Owens legs. Without a shadow of doubt, he looked at me and said, "you know one of the biggest hurdles with these kids is whether or not they have good muscle function." I said I knew that and that I had not had the opportunity to have Owen's muscle biopsied because the places he has been open surgically (the spine and the hernias and the back and ribs) don't have good active muscles and the biopsy would be wasteful. Then he said, "I can feel his leg muscles and he has great muscle quality. He could be walking. We need to get on that now." Easy as that, I was elated. And I knew, we would be seeing him again.

I am not really a dreamer. I would like to think that I am realistic about most things and especially Owen. I have never doubted that he may walk but I have also attempted to cautiously warn those that are too hopeful that there is a real possibility that he won't and that we most likely will have wheelchairs and ramps and the whole nine yards. That all still could be true. But to hear someone who does this all the time, who sees these kids and operates on them and treats them, say this makes me more of a believer. No one has been this optimistic, with the exception of his therapists who can see (as well as us) that he wants to stand and walk and take steps. For someone to speak in absolutes is pretty exciting.

So a new part of this roller coaster ride begins. We do the VEPTR next week and God willing, we don't have complications and we are home within a reasonable period of time. Then we see this doctor again 6 weeks later and come up with a plan for his knees and feet. He can do one leg at a time, but the foot and knee at the same time, which cuts down on the amount of surgery needed and it means Owen won't have to go through 4 separate castings (2 feet, 2 knees). It means less anesthesia, less hospital time, less chaos.

It means that one day, hopefully in the next 6-8-10 months, I am going to see Owen walk down the hallway (assisted or unassisted) and go looking for whatever trouble Caleb has found and watch him participate in wrecking my house, instead of being a bystander. And I can't wait.