Amanda was born on April 13, 1999. My pregnancy was pretty uneventful and due to the fact that I tend to have failure to progress, she was a planned c-section. It's funny, I always think that SMA babies are so beautiful and Amanda is no exception. She had a head full of hair and huge brown eyes. She was such a pretty newborn! Everybody still comments on how beautiful she is. I guess that this is mother's bragging rights.
Anyway, our story is pretty similar to other stories of babies who have SMA Type I. I noticed around 6 weeks that Amanda did not have good head control. I brought this to my pediatrician's attention, and he said that she was just slow. This went on for several months. Her tone seemed low and her head control never progressed. My concern and my husband's concern began to mount. At Amanda's 5 month check up we decided that we were going to have to see a neurologist. But once our pediatrician saw Amanda, he referred us on. It was the longest two weeks I have ever experienced. The night before the appointment to see the neurologist, I knew something was terribly wrong. I could not ignore mother's intuition any longer. I can remember strolling her into Children's and thinking that gravity is having such an effect on Amanda's limbs. I remember seeing a child in the waiting room who was clearly younger than Amanda yet so much stronger. I remember hearing her diagnosis and the death sentence that followed. I remember feeling that this was the end of what should have been just the beginning.
I don't know how I survived the next two weeks. I have never known darkness that accompanies this type of pain. Through the help of family and friends and the love that I have for my daughter, we began to live again. There has been a lot of tears and a lot of pain. But, there has also been a lot of joy. My daughter is teaching me and my husband so much about life. She has taught me the true meaning of the word "love" and the word "pain". Through my daughter we have learned how to prioritize life and the meaning of family and friendship. I will be forever indebted to my daughter, Amanda, for teaching me such valuable lessons. I don't know how long Amanda will be with me but she has taught me things that some people never have the opportunity to learn. She will always be alive in my heart because she is my beautiful daughter who has impacted my life like nobody ever has.
Amanda was diagnosed on September 28, 1999 and her G-tube was placed on October 27, 1999. We were in the hospital two weeks later with a cold. Our heads were spinning, and life still hasn't slowed down. Amanda came home from that hospitalization with supplementary oxygen to be used at nights and during naps. She soon regained her strength and the oxygen machine was pushed into the closet. Unfortunately, she was admitted again with a partially collapsed lung. This visit we were introduced to Bi-Pap and the In/Exsufflator. Every time we got another piece of equipment it was always a reality check. A reminder that our beautiful daughter would have to face a daily battle to see another day.
I can remember coming to the Our SMA Angels website desperate for information. Trying to learn from people that had battled this neuromuscular disease before me. I am going to try to do the same for my visitors.