I've heard it said that when emotion is attached to a memory the memory is much more permanent. I think this one will stay with me for a very long time. There is nothing like a child to bring out emotion in a parent. Our family has been worried about the muscle movement in Sam's jaw for quite some time. On our family vacation to Florida Terrence and I started noticing that it looked like the muscles in her mouth had forgotten how to chew. Her jaw would get stuck open and the food would just fall out. What was going on? Terrence and I ached for her. We passed a quick look of worry to one another from across the restaurant table and shared our heartache as we wondered what to do. When we got home we started at the dentist. He took x-rays. "I don't know, weird". We went to the family practitioner. "I don't know. Let's try the neurologist." Several phone calls and the soonest pediatric neurologist was a month away, but we could wait because we were going to get some answers, finally. Our daughter couldn't eat without great effort. One month passed. The neurologist said, "I don't know. She needs to see a Movement Disorder Specialist." The Movement Disorder Clinic called, "Sorry, we don't take your insurance." They, of course are the only Movement Disorder Clinic in Utah. "That's ok, I'll work on the insurance and see what we can do. Please give us an appointment." "It will take weeks of review before we can see what doctor will take her, you have no diagnosis, and even after that it will be 3-4 months before we have an opening". In the meantime we had taken her off of her primary medication because it was suspected that could be the cause. She slept for 4 days and refused to eat for two because she had no appetite. She was failing to thrive. After hours on the phone begging to see a doctor that could help, I put my head down, cried and prayed. Then I packed her up and we headed to Primary Children's Medical Center. We were in the emergency room for 5 hours. After 4 doctors and 3 nurses, finally someone said we need her to see the neurologist. Within 5 minutes of seeing the neurologist she was given a diagnosis. They tried to put an IV in her. It took a special IV team because she was so dehydrated and her veins so flat the regulars couldn't get it. Then they admitted her for testing.
She had 3 spinal taps, they weren't able to draw fluid on the first two. The next day we went to the room called "specials". They inserted the long needle while watching the location on a big screen x ray machine. The doctor assisting told Sam she had the best birthday ever! It was his birthday too. They were immediate friends. She was sedated. The needle went in, the fluid came out. The third was a success. Her new friend carried her from the memory foam board to her hospital bed to be wheeled back up to the NTU. They're testing neurotransmitters in the brain and doing gene testing for dystonia. They drew blood and kept her hydrated with drips. Sam spent three brave days in the hospital being poked and prodded, questioned and observed. Weeks before we couldn't get a doctor to see her. Now they were bringing in doctors and students to observe her and watch her chew gum and crackers. Most had never actually seen someone with dystonia, especially not a youth. I was happy to share our experience with them, not happy that it was us, but as these were the future doctors that my children's children could be begging to get into, wanting them to learn all they could so they could know more about this movement disorder and help in whatever way possible. Everyone we met there was so kind and willing to help. What a wonderful facility to have so close to our home.
The Neuroscience Trauma Unit was different from any floor I had ever been on. It was mostly quiet except for the constant howling of one poor boy accross the hall. All the doors were shut. When I left the room I shared with Sam, I could see other parents quietly sneak out of their rooms around 6:30 a.m. to shower before doctors would make their rounds. They would announce a complimentary cart at 9:00 am filled with muffins, bagels, and juices for the parents that can't leave their children for more than 5 minutes for fear they may miss the specialist coming by to see them. There were beeps in the night, blood pressure to be taken every four hours, morning or night, asleep or awake. Sometimes Sam would see her neighbor who was sharing a jack and jill bathroom, other than that it was only the nurses. I was so grateful to know we would be leaving, that Sam's condition is liveable and felt compassion for the other parents on the other sides of all of those closed doors. I was sure some had been there for weeks or longer, for many it was not their first visit and they unfortunately probably knew the ropes. The floor was full. Full of silent parents and their silent children with nothing to hear but their beeping machines in the night.
I was overwhelmed by the small acts of kindness that meant so much. So many people love Sam! The visits from those who have such busy lives of their own, the aunts home watching the other kids so I didn't have to worry, an uncle and a father willing to give a priesthood blessing, neighbors willing to do my part of the carpool with no questions asked, meals brought over, little gifts for Sam, calls, notes, thoughts of kindness, teddy bears, flowers, balloons, a welcome home poster, and best of all prayers.
Sam is doing well. There is no cure yet, but they can treat the condition. Before we left she was treated with botox injections through the inside of her mouth to relax the locking muscles. We don't know if it works yet, they said it could take a couple of days. If it does work she will need them every few months. If it doesn't, there are other routes to take.
Thank goodness it hasn't affected her smiling muscles!
Going home!
