September 29, 2011
What started out as just another day...turned into a nightmare, our new reality.
Lane went to work for a few hours and then went to pick Noah up and take him to see the neurologist. I had asked him to call me when they got done to let me know what the doctor said. Around 11:30 he called and left me a voicemail. I knew from the tone in his voice that the news was not good. I had done some research prior to the appointment so I had a few ideas......So, after what felt like a lifetime I took my lunch break and called him.
When I got him on the phone I fell apart before he even said anything....
The neurologist told him that it had to be one of two things....Spinal Muscular Atrophy or Muscular Dystrophy. Neither diagnosis was good. She checked Noah's reflexes and saw that they were extremely weak. She said he also had weak/poor posture and low muscle tone. They took a blood sample and told Lane it would be 2-3 weeks for the results to come back. She then referred us to an SMA specialist here at the University of Utah, Dr. Kathryn Swoboda. She said that Dr. Swoboda was out of town so it would probably be next week before we heard anything from them. As she was telling him the suspected diagnosis she showed no emotion....Heartless and cold......
Now what...?? We wait? Yes....we wait...
So that's what we did.....waited...
And researched and waited and researched some more.....
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