My Story

BJ and I met in early 2004. We started dating in October of that year. He proposed to me after being together for 6 months. Some people may think that's soon, but I was ecstatic. I just knew he was my soul mate. We got finally got married on New Years Eve at midnight at my preachers house. We didn't tell anybody about it except my parents and grandparents. We had a wedding May 13,2006 and everybody thought that was our 'REAL' wedding. After we were married a year we told his family and others that we actually got married Jan. 1.
We tried for about 3 years to have a baby and wasn't successful. I had done gave up that I may not ever be able to have kids. I went to my parents house one day just to hang out, and their dog Max could not stay off of me. Finally he got real still, and next thing I noticed was a very warm sensation on my leg. He had peed all over me. He had never done that before. Well a few days later (Sept 13, 2009) I found out I was pregnant. Didn't believe it at first. I took 5 pregnancy tests and went to my family dr. And they all said pregnant. Now that explains why he peed all over me. Lol. BJ and I were in shock. But very happy.
I had a great pregnancy. No sickness at all. Then around 14 weeks the doctors office did the genetic testing. It came back positive for Trisomy 13 and 18. I was so depressed. They sent me to Duke to have further testing done. I was a complete nervous wreck. After having the other testing done, they said it was a false positive and that they have been having a lot of those lately. They said not to worry that my baby was completely healthy. I was sooooo relieved to hear that.
On May 5, 2010, my water broke a 3 am. We headed to the hospital and was ready for Madison to be born. I was so very nervous. I ended up having to have a c-section because I wouldn't dilate. Then at 9:16 p,m. she was born weighing 5lbs 14oz and 17.25 inches long. With a head full of dark hair. She was the most beautiful baby I had ever seen. Big blue eyes like her daddy and a dimple in her chin like her mama. Doctors said she was completely healthy.
We started noticing that around 2 months that she wasn't moving her legs like she should, and wasn't even trying to hold her head up. When we took her to her pediatrician for her 2 month checkup, he said not to worry that she may late milestones. So we were like ok. Then around 4 months she got to where she wouldn't move her legs at all. We had switched her to a different pediatrician and he was very concerned. So he sent us to see a doctor at VA Baptist in Lynchburg. They checked her out and said they thought late milestones, but wanted her to see a pediatric neurologist. That's when our world turned upside down. The neurologist said what she thought it was, but didn't know until the blood work come back. Just hearing what she said I lost it. I swore that nothing like what she was saying was going to be wrong with my daughter. The doctor said it would take about 4 weeks for her blood work to come back.
On September 27, 2010, I got a phone call from the neurologist stating that the blood work came back and she tested positive for SMA type 1. She wanted me to look it up on the computer and write down any questions I had for when we brought Madison back the next day. My heart completely fell out of my chest and on the ground. I was getting ready to walk into work when she had called. My boss sent me home and told me to take a few days. I left and went straight to my moms to get Madison. I sat there holding her and crying thinking how could god give me her and then take her away before she was 2. That was the worst day of my life.
We found out about a week after her diagnosis that their was a family in Roanoke that had a daughter with SMA. We got in touch with them and met up with them. They have a beautiful little girl names Addison Grace Garner. It was so nice to meet another family who had a child with they same disease. They really helped us by going over everything. James and Jennifer Garner are wonderful people.
Around the beginning of October, Madison started sounding really junky. I took her to the doctor multiple times and they all just said she was too young for medicines. Well on November 4, 2010, we had to took her to meet her GI doctor for the first time. He noticed her breathing was a lot heavier. Later that day, she wasn't acting her self at all. She had done got to where she wouldn't eat at all. BJ and I decided to take her to our local hospital because we didn't feel safe driving her a hour away to a children's hospital. Thankfully we got her to our local hospital in time. Her oxygen was 87 and she was completely dehydrated. My dad works at the local hospital and that was another reason I felt safe taking her their. The doctor told my dad if I hadn't brought her in then, we would have lost her. She looked so pitiful and helpless. It just tore her dad and I up big time. They got her stable and transported her to Roanoke Hospital. That is when SMA really hit. It happened so very fast. She had pneumonia and her left lung had collapsed. The Garners came up to visit, and really helped us out. They even spoke with the doctors explaining what needed to happen since obviously nobody knows what SMA is. And we were very thankful for that. They were and still are our heroes. After about a week in the hospital at Roanoke, we decided we wanted to have her feeding tube put in. Problem was there were no surgeons available in that area to do it. The closest hospital at that time that we knew was in Cincinnati, Ohio. So they flew Madison and I their and BJ and my mom drove. We were in Cincinnati for 3 weeks. We learned a lot about SMA and how to care for Madison. It was really rough watching her go thru everything. It really opened our eyes about SMA. After getting her lung back inflated, they scheduled the g-tube surgery. The surgery went great. We got to see her about a hour after. I was a complete wreck when I saw her after her surgery just laying there with that tube down her throat. And the cuts on her stomach. My heart completely broke. And I started asking God again why??? But when she woke up and looked at me and smiled it made me feel so much better. About 2 days later they extubated her (took breathing tube out) and put her straight on BiPAP. She did really good. Then on Thanksgiving, her lung collapsed again. The hospital was great to Madison and taking care of her. Finally when she started becoming her self again, we talked the doctor into transferring us back to Roanoke to finish recovery. We all were missing our families so very much and they were missing Madison. They transferred us back on a Friday night. The doctor their released her so we could take her home on a Tuesday. We were so excited to finally bring our baby girl home. But we were also so very scared because we would be the ones caring for her. It was all so scary. While I was in Cincinnati, I lost my job because my FMLA had ran out. I wasn't really stressing that because I wanted to spend every single minute with Madison. Work was the last thing on my mind.
In January 2011, we had a really bad scare with Madison. My mom was watching her that day because I had an appt in Danville, and BJ was at work. Madison also had physical therapy that day as well. My mom called me to let me know that Madison had coded during physical therapy. My heart fell to the ground once again. I rushed home to the local hospital. Madison got choked on her secretions and that's what caused it. This was very stupid of us, but we didn't even think about using the cough assist. That's why she coded. I swore to myself that I would never have Madison more than 5 feet away from her cough assist. Part of my was glad I wasn't the one their when she coded to see her turn gray. But part of me wishes I was. My mom saved my daughters life. I could never thank her more.
Living with a child that has SMA is probably the hardest thing we have to do. People always ask how do you do it, and all I can say is when it comes to your Childs life you will do any and everything you can to keep them alive. SMA is a horrible disease that affects so many kids. I wouldn't trade Madison for a million kids that are healthy. Nobody can or will ever take her place.