The Children's Miracle Network is very special to us. For those of you who don't know...Grace was diagnosed with torticollis (twisted neck, she would tilt to one side due to a tight neck muscle-the sternocleidomastoid muscle) when she was about a month old. We noticed that she would only sleep on one side of her head. Our pediatrician gave us a home physical therapy program to complete with Grace, which consisted of us stretching her tight muscles. We did not have very much success with that, so when she was about 2 1/2 months she started seeing a physical therapist on a weekly basis and we continued with the home program daily. We tried a couple of different collars with Grace to keep her from tilting so much and we did see some progress, but she is our little Houdini...she figured how to take them off! We also tried botox injections, her specialist injected the botox into Grace's tight muscles, so that we would be able to stretch her muscles even more. We did see some success with that as well. When Grace was 7 1/2 months old she was diagnosed with plagiocephaly (flattening of the skull). She developed plagio, b/c of the way she slept at night...only on one side of her head. She wore a remolding helmet for 4 1/2 months to correct this condition and CMN helped us with the cost of the remolding helmet. It did wonders and Grace figured out how to take that off as well! When Grace was about 9 months old we started going to physical therapy twice a week and we did that for 7 months. CMN helped us out again with the cost of therapy sessions. After doing physical therapy with Grace for over a year and seeing a chiropractor a few times we were told by our surgeon to stop manipulating/stretching Grace. He wasn't convinced that it was a muscle issue that Grace was suffering from. We had a CT Scan and MRI completed on Grace (she had to be sedated for it, but did great). After months of deliberation by several specialists they came to the conclusion that Grace did not have Muscular Torticollis, but she had a bone abnormality in her upper spine. The joint between her top two vertebrate (C1 & C2) on the left side did not fully form. This is the reason why she tilts, so it is still called torticollis. 95% of children that have torticollis have muscular tort, the other 5% have a bone abnormality that causes them to tilt. Her specific abnormality, only a fraction of a percent of children have. She saw her surgeon in July and she had an excellent report. She is not in any danger...no signs of instability. As long as she never shows signs of instability then surgery will not be an option for her (possible surgery could consist of fusing the vertebrate together). We will continue to monitor her annually with scans to be sure that her spine stays stable, otherwise she will lead a completely normal life.
Grace is AWESOME. This does not hold her back at all and we are so proud of her for all of her accomplishments. Chris and I have pledged to continue our support of the Children's Miracle Network. Grace has participated in the Every Family Campaign, where she asks her friends and family to donate to CMN, for the past 2 years in the Spring and we plan to participate again this year. Thanks again to everyone who has supported Grace and the Children's Miracle Network!
1 comment:
We enjoyed our blizzards too. When I passed you on the road last night, I was coming back from DQ. I saw Mary, Larry, Kenneth, & Jess sitting outside at DQ enjoying their blizzards. It would be intersting to hear how much DQ raised for CMN.
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