|My name is Melissa. I have 3
beautiful babies. Amber is sma free and is 5. Haley is my angel Sma
2. She is 2 yrs old. Jonathan is 6 months old and sma free so far.
When I was pregnant with Haley I really never thought anything but that she doesn't move alot. But that didn't really alarm me cus I thought I'm just worrying. But after Haley was born I still didn't notice anything. When she was about 5 months old I asked my husband," Isn't she suppose to be doing more by now?" So I got a book and began reading and yeah she wasn't doing what she was suppose to do. I always called her my limp noodle. You could stand her up and her legs would just go limp. So at her 6 month check up I asked the nurse practitioner about her milestones and she told me to give her a lil more time. So naturally I took what she said. Well, When she was 9 months old I really knew something was wrong. She had her 9 month pe and I was talking to the doc. about her milestones. He asked if she could stand. So I got upset and told him to pick her up. She was sitting right there and he is the one who is suppose to be examining her. He did and her legs went limp. So then he referred me to the babies can't wait program and set me up and appt. with the neurologists in Chatt. Tenn. Dr. Knowles. It took 2 to 3 months just to get the appointment.
In the meantime we work with the babies can't wait team with her therapy. Then finally the appt. day arrives. We sit there he asks all these questions and we answer to the best of our ability. He says he wants to do a genetic test. We agree. He doesn't tell us what he expects. He said the test would come back in about 6 weeks. So we went home and wondered, discussed what it could be. Then one day the phone rang and it was Dr. Knowles office. The results came back early! We knew it wasn't good news. It came back early! Our family said its probably nothing to worry about. But being the mom and seeing my baby on a daily basis I knew the news was bad,
The day came to go to the appt. The doc. was renovating his office and wasn't seeing patients that day but he wanted us to know the news asap so he seen just us that day. We were sitting in the room anxiously waiting for the doc. He comes in the room and thanks us for coming. He began to tell us that Haleys results came back and said that She had Spinal Muscular Atrophy. And began to explain how most babies Dont live past 3 or 4 yrs old. I was horrified. I couldn't believe what this man was telling me about my precious baby. I got chocked up a few times and wanted to cry but I held back the tears so I could hear everything he said. Nothing he said was comforting. It was all doom and gloom.
On the way home I was driving. We were in shock. Talking about what we had just heard. Then I broke and starting crying the worst I have ever cried in my life. To hear your angel has this horrible disease and may die is the worst news you can ever hear. I was crying so bad I couldn't see to drive so I pulled over at the store and my husband and I held each other and both cried together.
That was when she was 13 months old. Now she is 2 1/2 yrs old and is the most precious angel in the world. She hasn't mastered sitting up, crawling, walking or anything like that. She has gotten weaker than she was. She has had pneumonia for the first time and was in the hospital 12-15-08 she is ok thanks to all the prayers. Thank you. We just recently got her a cough assist machine. Until now she hasn't really needed it. I do hope and pray that she makes it through the winter months. And grows up and haves a happy life. It's hard for her to watch her sister run, walk and go with family and she has to stay here and be with mom all day. It's sad and I hope a cure is found soon for all these precious babies. They deserve it.
Thanks for reading. Please feel free to ask me anything.