Sunday, July 20, 2014

St. Louis Here We Are

When I started this blog, it was to chronicle our clubfoot journey. We had already been down this road with our oldest son when he was an infant, and we had just found out we were expecting our second clubfoot baby. We had also found out that the doctor we had used for our oldest was no longer practicing, so we needed to find a new doctor. This began my extensive (and exhausting) research about clubfoot.

I began to realize how different Oliver's treatment was from the norm. He did not have the surgery to lengthen his heel cord (tenotomy) on either foot. This happens occasionally but rarely. But the thing that was most different was that instead of the usual bar and boots brace, he wore a custom orthodic called KAFOs - knee, ankle, foot orthodic. And we were told to stop them at 13 months old, instead of the 4 years that is usually recommended. I also started reading about relapses. Some children, for various reasons, have a recurrence of their clubfoot and have to undergo additional casting and surgeries. Relapse was never something that was mentioned to us. Oliver's last appointment with Dr. Cummiskey was when he was about 21 months old.

Had I done research at the time I would have questioned his doctor and asked for the standard treatment. But Oliver did so well that I didn't even think to ask. His feet looked amazing and we were so happy.

During the winter/ early spring of 2013, Oliver was in speech therapy and a physical therapist noticed how he was walking - on his tip toes. We decided to do some physical therapy with him to stretch his feet and see if we could correct that. The therapy helped, but we began to really worry.

In July 2013 we went to Indianapolis to meet with Dr. Kayes to see if he was who we wanted our second son (who was due in September 2013) to be treated by. We took Oliver with us to see if he would take a look at him. Without us even asking, he started to look at and manipulate Oliver's feet and examine them. He said while there may be a little tightness, it wasn't anything concerning and to just encourage him to walk on flat feet and keep up the stretches. We were relieved.

However, Oliver's tip toe walking continued. And it seemed to get worse. There were times he seemed to walk more on the outside of his feet and when he did walk flat footed, it wasn't for long. I worried so much about him. Finally, we decided to contact Dr. Dobbs, one of the best clubfoot doctors in the nation.

I had been in contact with Dr. Dobbs previously when I was looking for a doctor for Max, and had entertained the idea of taking Max to him for his treatment. We ultimately decided to stay in Indiana for Max's care but I always kept Dr. Dobbs in mind in case anything emerged that I felt we needed expert care.

One night while getting ready for bed, I asked Oliver to walk around a bit while I took videos. I then sent them to Dr. Dobbs and asked his opinion. He replied that same night saying he could see that there was tightness in Oliver's heels and his forefeet turned in, and that Oliver would benefit from treatment. He said to let him know anything he could do to help.

My heart sank. In my heart I had expected this, but part of me had hoped he would say, "oh it's ok, he will be just fine!" Over the next few days, Dr. Dobbs and I exchanged numerous emails. He explained that he would first try casts because at times that can correct the problem. If not, then we would talk about surgery - either tenotomy or tendon transfer.

I talked with his nurse, who explained different outcomes depending on what Dr. Dobbs sees when he examines Oliver. Because Oliver was born with bilateral clubfoot, both legs will be in casts. They say we will be surprised by how he finds ways to get himself around at home, but we will also have a wheelchair for when we are out and about. We just don't know what to expect because so much depends on what Dr. Dobbs says. But there is a very good chance that when we leave Dr. Dobbs' office, Oliver will be in casts.

We have not told many people about what is going on. We haven't even told Oliver yet, because we don't know much to tell him. We will briefly explain to him tomorrow the best we  can. We didn't want anyone to say anything in front of Oliver, so we have been pretty private about it. I am just now sharing publicly , even though I still don't know much to say. There are so many unanswered questions.

We just arrived in St. Louis tonight (Sunday, July 20). Tomorrow at 2:45 (3:45 at home) is Oliver's appt.

My heart is so heavy thinking about it all. I just can't process it. Prayers for our sweet Oliver are appreciated.

No comments:

Post a Comment