Tuesday, May 17, 2011

because the sky is blue, it makes me cry....

This is something I believe that everyone who is reading this knows about, but it's not something I talk about on a regular basis.  So much of it is in my past, and I don't think either of us suffered for any of it, it was simply how things were.

Aiden was born with bi-lateral clubfoot.  It is one of the most common birth defects, effecting babies all over the world.  Even though it is extremely treatable, there is very little known on what actually causes it.  It is widely believed to be a genetic disorder, most commonly passed through the paternal side of the genes, though it's not for sure.  Some causes have been blamed on cramped maternal abdominal space, and is also linked with other genetic disorders such as spina bifida. There are also some rumors about anti-depression medications taken during pregnancy causing these disorders, but the clubfoot is usually accompanied with genital deformities, and mental retardation.

Aiden just has plain-old clubfoot.  He was casted within and hour of birth, and every two weeks for the next six months we were in the doctor's office for cast changes.  At six months old, he had his first surgery.  Posterior release of his Achilles tendons on both feet.  One of the telltale signs of clubfoot is the feet turning inward and upward due to a shortened Achilles tendon.  Most of the time this can be fixed with serial casting over the first few years a life.  Aiden, unfortunately, was not one of these cases.  After the first surgery he remained in casts for 8 weeks.

Then, for the first time in close to 9 months, he wasn't in casts, but instead was fitted for what is called a DBB bar.  It is a pair of shoes that are connected to a bar.  I was able to give him a real bath for the first time.  He HATED the bar.  There were two ways that his day would go while wearing the shoes on the bar.  He would either scream and cry for HOURS until I would finally take it off, or he would manage to get one or both feet out of it on his own.  When I say hours, I don't mean one or two.  There was one night when he cried for 7 hours straight, too tired to sleep, too tired to do anything but cry, until I finally broke down and took them off, for my sanity.

At one year, he had his second surgery, another outpatient, another posterior release.  After another 8 weeks in casts, he was graduated to an AFO brace, which is basically a brace that covers the lower portion of his legs.  These worked great.  At 15 months Aiden took his first unaided steps using the braces and little shoes that I had modified for him, by cutting the toes off them.  He would have walked long before that, but had been stuck in that stupid bar brace, and the casts.

He wore the AFO braces for close to three years.  He had his latest surgery shortly before he turned 4.  This was a tendon transfer, a toe tendon release, and a posterior and medial release of the Achilles.  This surgery was done inpatient at Children's Hospital in Omaha.  It was Aiden's first overnight at a hospital.  That day, and the following week was one of the hardest times in my life.  Aiden was potty trained, but for a week I had to carry him back and forth to the toilet.  For a week he did nothing but lay on the couch in a morphine (taken orally) induced haze.  He would cry in his sleep.  All he would watch was The Rescue Rangers movie.  My father came over once a day to relieve me for an hour or two, let me get out of the house, let me stretch my spirit.

Aiden has been out of braces since the day he came out of those final surgery casts.  He's been a normal little boy with no other signs of his disability (and I HATE calling it that, because it has never slowed him down) than a slight pigeon-toe.

We had his first orthopedic check up in three years, yesterday.  His feet look fantastic.  They're healing how they should be, his muscles are getting stronger, (another symptom of clubfoot is smaller than normal calf muscles, and feet) and his doctor is hopeful that over the next three or four years, more strengthening of his calf muscles will help even more with the in-turn of his feet.  My only real concern was some pain Aiden had been complaining of after being on his feet for long periods of time.  Leg pain, knee pain, ankle pain, and he tend to walk heavy on the balls of his feet, his chest pulling him forward more than his feet.

He had a back x-ray done, and Aiden has a slight curve of his upper spine.  His hips and shoulders are different heights.  This is something that the doctor assures me is not a huge issue now, but can cause issues later, and he recommended an MRI.  If there's an issue with nerves, they can be addressed now, rather than waiting for real issues to start when he's older.

Once again, I'm taking everything on the chin, and just going through the motions of what needs to be done.  It's difficult because for the first time, Aiden is on real insurance.  Not mine either, his father's.  I am not sure what sort of things that covers, and we're not exactly on speaking terms for me to ask.  I don't have thousands of dollars to pay for an MRI out of pocket, not to mention it's an hour and a half procedure and Aiden will have to be sedated for it.

Anyway, that's my story.  Any questions?

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