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Amanda's Story

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On Dec. 6, 1994 I went into labor at about 1:30pm, and Amanda was born at 4:59pm that day. She was the most beautiful baby I had ever seen, she was tiny, five pounds and thirteen ounces.  She had a headful of hair and was just a little beauty.  I loved her so much, she was perfect.

My mother in law noticed that she had a weak cry, me, not being around too many babies, thought that it was ok. She continued to suspect something was wrong, but held her tongue about it, as she didn't want to scare us. We were just convinced that our beautiful little girl was just perfect. We began to notice when she was around 2 months old that Amanda still couldn't pick her head up when lying on her stomach. We asked her doctor about it and she told us that she was just a lazy baby, that she could pick her head up if she wanted to. A few more months went by, and one day Amanda's right leg became bruised on one side, and splotched on the other. I was at work, and her Nana was keeping her. She called the doctor, then she called me. Her leg only stayed that way for about a minute, but we took her in anyway, and she sent us to a neurologist at Childrens Hospital. We had to wait another month for that appointment, and by then Amanda was almost 6 months old. When we went to that first appointment they told us that they had no idea what was wrong, but that Amanda didn't have any reflexes, and that her dad and I didn't have many. We had to go back for testing that week. They did an EMG and a NCV, and they thought she had Spinal Muscular Atrophy II, but they wanted to do a muscle biopsy to be 100% sure. The diagnosis was Spinal Muscular Atrophy II. They told us that she would never walk, but would eventually learn how to sit up and roll over. We left the hospital devestated, but determined to do anything and everything we could to make Amanda's life happy. That was in June of 95, in July we took her back for a check up, in that month she had started labored breathing, and they changed her diagnosis to type I, Werdnig-Hoffmann Disease, and told us that she probably wouldn't live to see her first birthday. We were all devastated.  How could this be; how could our precious little angel die?  No, no this couldn't be possible.  We looked at our little Amanda, sitting in her car seat such a beautiful, seemingly perfect little body.  Oh God No, this can't be happening.  We can't possibly lose our little angel baby.  They put her on oxygen that day, just while she slept and while she ate.

Amanda was always a happy baby, she loved music, and she had a special feeder seat that she would sit in and watch her little music videos.  By this time she could only move her arms from the elbow up and she could move her feet at the ankles.  This was all the movement she had but she would listen to the music and move her arms up and down, her way of dancing, and she would sing, ya ya, ya, ya.  She couldn't talk very much because she didn't have the stength or muscles to do so, but she was singing in her own way.  Amanda loved people, she loved to go shopping, and we didn't get to take her much, but she loved it when we did.

SMA is a genetic disease that kills the anterior horn cells, it affects their swallowing, sucking, walking, crawling, sitting, etc. There is no treatment and no cure. To learn more about SMA go here. Families of SMA Home Page

I took a leave of absence from my job and Amanda's Nana and I began our labor of love to take care of this little angel and make her life as happy as possible.  This was to be the most heartbreaking experience of our lives.  Amanda's Nana would come over every morning and help me take care of Amanda.   Some nights I would be up with her all night.  I am so thankful that I had my mother-in-law next door, I couldn't have taken as good of care of Amanda without her.   We worked together to give Amanda the best care that she could possibly have.

I decorated her room with her favorite things, dogs.  We cut out pictures of cute little dogs and pasted them all over her walls.  I hung bright colorful pictures at Amanda's eye level so that when she woke up, she would see bright happy colors.  We invented games that Amanda loved to play.   We would lay her on the big bed and I would lie on one side and Amanda's Nana on the other, and we would play our own version of the Hokey Pokey.  Amanda just loved this game and she would laugh her little laugh and her eyes would just shine with happiness.  We worked hard trying to find ways to entertain Amanda and keep her from being bored.  We searched high and low for toys that were light enough for Amanda to play with by herself.  She was bored with all the baby toys that she had.

Amanda's Daddy would play a game with her that he called riding the elevator.  He would support her entire body in both his arms, and bring her way up to the ceiling, and then drop down to the floor.  Oh, how she loved to play this game!  When he would put her up on his shoulder and walk around with her, she would get this look on her face like, "Look at me!!!!"   We loved to see this look on her face.

We would massage her legs, and move them so that they wouldn't get stiff.  We had to find clothes that were cool and comfortable, and that didn't have elastic in them that would cut off her circulation. Amanda stayed hot all the time, and we had to run the air conditioner all the time, even in the winter.   Her feet stayed cold, red and wet. If she wore socks, her socks would get wet, then her feet would get colder. We kept a blanket over her feet most of the time. Her nurse said that this was caused from her labored breathing. This problem was later solved when Amanda was put on B & O and Chloral Hydrate as it alleviated her pain and she could breath better.

Whenever her nurse from Hospice would come to check on her, when she would try to listen to her chest, or anything, she would hollor "Daaaaddy", "Daaaaddy" wanting her daddy to come and rescue her.

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