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Emma's collection of harness's, braces, and casts.
(wearing her rhino brace) |
Hip Dysplasia occurs when the top of the femur is not properly located in the hip socket or where the hip socket is expected to develop.
When Emma was born she was the picture of health. A beautiful 6 lb 14 oz baby girl with big rosy red cheeks and lots of blonde fuzz. The doctor came in to do the rounds and inspect all the newborns. Everything looked great. The only problem he found with Emma was that her left hip clicked which indicated possible hip dysplasia, but he didn't seem too concerned and referred us to a pediatric orthopaedic surgeon just in case she needed a brace. I remember holding Emma and thinking, how unfair, my poor little baby with the hip problem. Little did we know, Emma had many other battles that were just beginning.
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Pavlic Harness - 3 weeks old |
So, when she was just 10 days old we brought her in to see the amazing Dr. Mary Beth Deering. We had no idea that she would soon become one of Emma's most important caregivers. They did an ultrasound of her hips and found that not only the left, but both hips were displaced. Dr. Deering prescribed a pavlic harness and Emma was to wear it ALL the time. It came up over both of her shoulders and went down to both of her feet. We watched as our perfect new baby was awkwardly stretched and positioned in this weird looking device. She could no longer be swaddled and breast-feeding would become increasingly difficult. I left that first appointment in denial and angry that Dr. Deering could expect us to put this unnatural thing on such a tiny baby. We wore it on her anyway and after 8 weeks there was no progress. "What a waste, we tortured our baby for nothing," I said to Justin, "this doctor has no idea what she's talking about." By this time Emma's vision had become a question, she was loosing weight, and spent her days and nights screaming in discomfort. It was becoming apparent that we were dealing with more than just hip dysplasia. So when Dr. Deering prescribed a rhino brace we politely smiled and nodded. We would do our best to wear it on her, but life with Emma had become really hard and it seemed appropriate to let the hip dysplasia take a back seat for the time being. We really did try to keep her in this brace as much as possible, but then one day when Emma was 3 months old, after a visit to her pediatrician, we were admitted into Montrose Memorial Hospital and then transferred to Denver Children's. After that it was as if the medical issues kept piling up. Just when we had come to terms with one scary possibility, another would be added to the list. I hate to admit it but the hip dysplasia was ignored for a couple of months.
When things seemed to settle down a little bit we went back to Dr. Deering. The news was not good, Emma's hip sockets were still not formed and her high muscle tone was really adding to the problem. She wanted to do surgery and start giving her botox treatments to mellow out her tone. Emma was seven months old when she had this surgery. Dr. Deering cut her adductor muscles (inner thigh/groin) so that it would be easier to keep her legs "frogged". Then she was given her first round of botox and fitted with a cast. Emma recovered remarkably fast and began weekly physical therapy almost right away.
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Justin and Emma after her most recent botox treatment.
(Still sleepy from the anesthesia) |
It turns out I was wrong. Dr. Deering DID know what she was talking about. In fact she's very good at what she does and has become one of our favorite people. She has taken a special interest in Emma and has helped us to treat her for all kinds of problems, from diaper rash to feeding issues, things that have nothing to do with orthopaedics. She has introduced us to other families who have children with special needs. She has set us up with specialists, therapists, and support clinics. Dr. Deering has a genuine concern for her patients and their families. She truly loves all the little people she works with and has become an essential part of our team. For now Emma's hips are looking good, the left is in socket, but her right is still a work in progress. She receives botox treatments once every 3 or 4 months in hopes that she will gain more control over her muscles. It has been helping tremendously. She still wears her rhino brace for about 16 hours a day.
1 comment:
Thanks so much for taking the time to record all this information. It is good to hear a fully detailed version of what you guys have been through and are still going through.
We love you so much!
Jesse & Cami & Fam
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