Wednesday, April 28, 2010

Treatment so far

I thought I'd give a rundown of what L.E. has been through so far. Two hours after she was born, our pediatrician diagnosed her with DDH. He referred us to a pediatric orthopedist, whom I shall call Dr. P. Her first appointment with Dr. P. was an emotional one for her dad and I mostly because Dr. P. is very cold. He bluntly told us that she would be in either a harness, brace or cast for the first year of her life. Even if her hips fused into their sockets, he is holding fast to this recommended aggressive treatment. I cried in the examination room and Dr. P. showed no emotion towards me whatsoever. I know doctors make up for their lack of compassion with their expertise but I expected a little bit more from someone specializing in pediatrics. Especially from someone who has children of his own.
Dr. P. prescribed L.E. the Pavlik Harness and sent us over to an orthotic place for it. The people there were fantastic. The gentleman that outfitted L.E. took such good care of her and was extremely patient in teaching us how the harness works. He told us she could wear it either over or under her clothes. I was shocked by how stiff and scratchy it felt but L.E. doesn't seem to mind it at all.
We've had follow-up appointments with Dr. P. every week. He hasn't warmed up much but has gotten a little better. He checks her harness' fit every time. At our last appointment, he said that her hips were definitely in their sockets. Once again, I asked how long she'd be in a harness and he is sticking with his one-year assumption. She'll be in the harness for three months and then a brace for another three. After six months, she'll only be in the brace at night.
He scheduled us an ultrasound for last week. L.E. was so good for the whole procedure! She was awake but didn't fuss at all. After it was done, the radiologist asked us why we were there. We were taken aback and said that she had DDH. He shrugged and said, "OK. Whatever." Again, another doctor lacking a personality. I took that as a glimmer of hope that her treatment is working faster than Dr. P assumed. I guess we'll find out once he looks at her ultrasound images.

Saturday, April 17, 2010

Pavlik Harness: a love-hate relationship


I've mentioned the Pavlik harness and thought I'd post an image of it. L.E.'s is not as cute as this purple one. Hers is white with red clasps. I ask you, Swedish makers of the Pavlik harness: Why WHITE? I've seen pics of dark blue ones and wish we were that lucky.
L.E.'s now has been accented with pink Mylicon stains. She's only peed on it once and I think she'll eventually figure out that when she pees on it, it gets to come off for a few hours.
We have to remove the legs to change her diapers because she's a bit of a sprayer. We've managed to cover it up with clothes. She wears a onesie with the harness over it. We put socks on her feet so they don't get chafed. Not sure what summer will be like but for now, you can barely tell she has it on. Sometimes she looks like a linebacker, though

In her Easter outfit, you couldn't even tell she had it on. Fluffy bunny slippers do wonders for covering the harness up!

Hello

Hi. I decided to start this blog as a sort of therapy. When researching DDH in infants online, I couldn't find any resources that dealt with personal experiences. So this is my way of reaching out to other parents of hip-babies and letting them know that they're not alone. Yes, there are far worse diagnoses new babies can have other than Dysplasia. But when someone refers to your baby as "special needs" when all you want is to think they're completely normal with just a minor setback, it stabs you in the heart.
This blog is L.E.'s and my story of life with infant DDH.

Perfection Interrupted

It took a long time for me to want to have kids. I never had a maternal instinct in my whole life. Even my treatment of my Cabbage Patch Kids would have sent a CPS caseworker into a tailspin. But one day 18 months ago, it hit me like a flash. Something was missing in our lives. My husband T and I decided that having a baby was the fulfillment we both needed. Fast-forward to March 2010 and our beautiful L.E. was born. She was the perfect little baby girl, chubby and pink. But perfection was not the case. Our pediatrician immediately noticed her hips clicking out of their sockets.
L.E. was diagnosed with Developmental Dysplasia of the Hip (DDH). Her hips were not fused into their sockets properly. The pediatrician told me this less than 2 hours after delivery and all I could think to say was that our dog had that same thing when he was a puppy. $1800 in surgery costs later, he was cured. So I didn't think much about it until they came and took L.E. away to do an ultrasound and more tests. Our pediatrician made it seem like it would be a very simple treatment; she would wear a little cast for a few weeks and it was great that it was discovered so early. She would be able to run marathons some day! Once we were home from the hospital and I began Googling away, it started to sink in.
We started seeing a pediatric orthopedist that I would love to call Dr. Personality due to his lack of having one. He confirmed that her hips made "clunking" motions when he moved them in and out of their sockets. He prescribed her a Pavlik harness. When asked how long she would need to wear it he casually replied, "a year or so." A YEAR?! My beautiful baby girl was going to be wrapped in canvas and velcro for a year! All I could think about was the drawers full of beautiful clothes that were going to be accented with a hideous jumpsuit-type harness. I know I sound completely selfish and vain right now but that is honestly what I thought.
We're very fortunate that L.E. is not in any sort of pain from DDH at all. But with me being post-partum, I cry every day because my perfect soft little baby is wrapped in stiff crinkly-ness.