Many people know that my husband, Andy has a neurological condition which causes some involuntary movements in his neck/shoulders. In everyday life it isn't too noticeable. However, if he gets angry or is feeling nervous about something it shows a bit more prominently. I've always joked that I know I'm in trouble just by looking at him!! lol
Before we had children we were told that his neurological movements were the result of a birth defect after he was born and he needed to be revived. It was this lack of oxygen that supposedly caused the nervous disorder in which he has long suffered from. We were happy to know it wasn't hereditary as we proceeded on our journey to start a family!
Our firstborn is our beautiful Lydia. As she neared age 3 we began noticing involuntary movements in her hands. This petrified me, but over and over God revealed His faithfulness. We went to a pediatric neurologist who ordered an MRI for her. They pinpointed the neurological issue to be in the cerebellum. The base of the brain-- right above the neck. We were told that Andy's condition has been misdiagnosed all these years, because Myoclonus (his original diagnosis) isn't hereditary. We were told that they would need genetical testing, but they didn't know where to begin. Then, we were told that even if they find the reasoning for their issues, there is nothing we can do. There are no medications available right now that affect the cerebellum. Just so you know, we opted for no genetical testing. We put our trust in the Lord!
I was devastated. I never blamed Andy although he often blamed himself. It was one thing knowing that Andy had this as apart of his life. I met him as an adult. He had learned to deal with it and he was okay. It was a whole new experience to watch my child struggle with every day tasks: eating, drinking, writing, coloring, etc. She would cry and get frustrated. She'd ask why her hands wouldn't stop moving. I often had to excuse myself from the table to go lock myself in the bathroom to cry. It pulled my heartstrings and I didn't know how to deal with it. We got her some physical therapy which helped. I bought her weighted pencil grips and weighted utensils. These helped her, definitely! God would often bring other children to my mind who were struggling with life threatening illnesses and diseases. It made me realize, "Okay! Lydia moves... we can deal with this! I'm not telling her goodbye over this." That remained to be my sobering reality to get me through the mourning over her not being "perfect". Our motto for her became, "God made me special and I'm perfect in Him!" We repeated this daily and often times we repeated it many times a day!
It was with my fall in December that I endured a very damaged pelvis, hips, and a slipped disc in my spine that I met with a Chiropractor who has brought such healing to our family! He met Andy while explaining my xray and EMG results and was very intrigued with his movements. So he did Xrays and EMG's on the whole family. Andy ended up having severe scoliosis of the neck.. right under his cerebellum. Then he put Lydia's xrays up and what did she have? Severe scoliosis of the neck (very severe for a 4 year old, in fact) right below her cerebellum. We were AMAZED!!!
It took a while for Lydia to warm up to the fact that Dr. John was going to be tapping her neck with his instrument. It didn't hurt, but it made a loud popping noise which she didn't like! He told us that she was his most resistant patient to date, but thankfully she came around!! Last week, after about 14 weeks of seeing him 3 times a week we had more xrays. We got those results this week and were dumbfounded that Lydia's spine in her neck is completely aligned and straight! Praise the Lord! We've definitely noticed a decrease in her movements and Dr. John told us that it takes a while for the brain to retrain itself. He truly believes that with time Lydia's movements will more than likely go away and she will lead a normal, healthy life! I am praising the Lord for His faithfulness!!!
Our children really do belong to Him and I praise Him that He has brought healing to her spine which will in turn bring much healing to her whole body!!
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| Lydia & Cassie |
