4.11.2011

Our Shriners Journey- Part 5

Read Our Shriners Journey- Part 1, Part 2, Part 3, Part 4.

What we learned
We were stronger than we knew. That was basically the theme for our family for 2009, with our daughter's birth, Mr. Making It Bright's surgery, and everything else that came with it.

Shriners is an experience. From encounters with “surly nurse” to trying not to look like you feel sorry for other parents whose kids are worse off, every visit is a learning experience, a growth experience.

Being a parent is hard. When there’s something “wrong” with your kid, it’s even harder.

While we were first unsure why our doctor sent us to Shriners since we typically viewed it as a place for people who can’t afford other care, we soon discovered that wasn’t the case at all. It’s a great place for comprehensive care of a condition such as that of our little lady. They have x-ray on site and even perform surgeries there. Her doctor, Dr. M, is fantastic. He comes in each week from the local university hospital and brings residents with him so they can learn as well. It’s a teaching experience and they also gather data for research. Maybe our daughter's case will help with treatment of other kids in the future.

Outlook
A diagnosis of DDH is scary at first, but it’s manageable. Our daughter is more likely to have problems with arthritis in her hip in the future, but her condition was diagnosed and treated early. Without early treatment, surgery is most likely inevitable. If you are having children or know someone who is, make sure they get their hips checked as soon as possible after birth. Check with the pediatrician, ask if they heard or felt any clicking.

She continues to go to Shriners every 6 months for an x-ray and exam by the doctor. At the visit that occurred last month, her hip looks good, is growing, but still needs to be monitored regularly. As Dr. M said, “We’re not out of the woods yet.” Her right femoral head (ball) is still smaller than the left, as is expected with DDH cases at this age. Her right acetabulum (cup) is forming a cup as it should but Dr. M said it can go either way. It can cup and perform beautifully, or it can become a “ski slope” for her femoral head.

Depending on how it progresses, our daughter may need surgery when she is 3 or 4 years old. Still over a year or two away, but I can’t help but think about it now. If she requires surgery, she’ll wear a spica cast for approximately 8 weeks after. This will require some creativity on our part, but I think we’ll manage. I just don’t know how it will affect our daughter's spirit—if she’s awake, she’s running around and squealing, playing and laughing. She’s always on the go.

Pray/hope/cross your fingers, whatever you want to call it, that her acetabulum does what it’s supposed to do and she doesn’t need surgery.

1 comment:

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