Something Is Wrong...But What?

When I was around 4 or 5 months old, mommy, nana and papa started thinking that something was the matter with me because I hardly ever moved on my own. I hadn’t turned over and didn’t even try to. I didn’t scoot around in the bed. I wasn’t trying to sit up and when mommy would hold me to stand up my feet would turn to the inside. Eventually I would just let my legs double up under me like they were a rag doll. Mommy told the doctors to check me out and they said “don’t worry she will do those things when she is ready” or “she is just a lazy baby“. After 11 months and a move with mommy to Ohio, the doctors finally listened to mommy. First they sent me for an EEG then they did MRI’s and all these test came back normal. Well ,while this was happening I got really constipated and ended up on Mira lax. I was taking an adult dose everyday just to go poop a little bit. Mom decided that with me being a sick baby and her needing help with me that we would move back to Gammaw’s house. I got really constipated again there and mommy took me to the hospital. By this time I was almost 14 months old and the nurses and doctors at the hospital thought I was awfully floppy and that I should at least be sitting on my own by now. Mommy was told to take me to see the pediatrician the next day. She called Nana and the three of us went to see him. He told mommy that I appeared to be floppy and need to be evaluated by a doctor at Duke or Chapel Hill. Mommy and Nana were so relieved now we were getting some where. I got sick again and they took me back to the doctor and he said that he wrote the request to see the neurologist but the nurses have just been busy. Mommy was really mad. Finally they sent a letter telling mommy that I had an appointment at Duke-Chapel Hill in November. Mommy and Nana were really confused that it was at two different places. Nana said that was too long to wait so she called both places to find out where I was supposed to go. Duke was the place that had an appointment for me. Nana told them that I was too sick to wait until November and if they had a cancellation today for tomorrow we would be there. In one hour’s time they called and had me an appointment in one week instead of a month and half. Mommy, Gammaw, Nana and I all went to see this neurology doctor. He examined me really good and told them I appeared to be very floppy and that he wasn’t sure but he thought I had Muscular Dystrophy. Mommy cried really hard. Gammaw and Nana tried to make her fell better but it didn’t work. Nana and Gammaw both left the room so me and mommy wouldn’t know and they cried too. This doctor made them take my blood and scheduled me for a EMG. That is a test where they stick little needles in your muscles and then send shocks to them. The blood test came back and he called mommy and told her it was not muscular dystrophy and she got real happy. She called Nana but Nana didn’t get happy. Nana had been looking on the internet and had found this disease called Spinal Muscular Atrophy or SMA for short .She knew that even though it was on the Muscular Dystrophy Association web site, it was really a motor neuron disease therefore it wasn’t really muscular dystrophy. Nana felt that I had all the symptoms and so she got mommy to look at what she had found. Mommy started looking at all these SMA angels pages and started to talk to some of the other mommies. They told her that it is a simple blood test and I shouldn’t have to have the EMG. Mommy called the doctor and told him we wanted this test . He told her we couldn’t make him do the blood test but he couldn’t make us do the EMG. Since it was going to be in a couple days I had the test done and it made me cry really loud. The little lines on the paper looked funny and mommy said what are they supposed to look like and the man said I can’t tell you what they are supposed to look like but it is not like that. The doctor called my doctor and they then told mommy, daddy, Gammaw and Nana that I had SMA. So they got all my medical records together in a file and do you know what they found out. The doctor in Ohio wrote that I might have SMA but never told mommy. Then the doctor that said I might have muscular dystrophy also put SMA in his records but never told mommy until after the EMG. Mommy was really mad why they can’t just tell you something so you can get prepared. Plus the doctor that told mommy I had SMA told them to take me home and love me because my days were short. Mommy and the rest of the family said that was unacceptable and started looking to find some kind of hope. I don’t know why these doctors think it is so bad to offer people choices. I am sure glad that mommy found some options for me.

My Life As It Began
We Know What is Wrong, so NOW what?


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