We were released into the biggest flu out break we had ever seen. With five kids, three are in school and one at daycare. My husband and I both work. The family I had didn’t understand and made it almost near impossible. We turned down anything extra holidays, birthday parties, dinners…. We didn’t do ANYTHING we didn’t HAVE to do.
February 26th 2017. Ami at six months old had gained an extra twelve pounds. Ami was a thriving baby. Ami was handed over to the Surgeons for a six hour Heart Repair. We had sold Ami-Tourage (Ami Is her nickname) t-shirts. We had our friends on Facebook and Instagram go red for a day. We sold over three hundred shirts and to see everyone support us on that day was just incredible.
The day before Open Heart Surgery our Birth Story went viral. The next thing I knew we were getting a call from People Magazine and receiving Prayers from all over the world. My daughter along with her diagnosis and open heart surgery was being accepted. Ami had prays from so many. Everyone began falling in love with Ami her big sister Ezra and our whole family. She was released a week after Open Heart Surgery.
We began sharing our lives with the world and shining a light on Down Syndrome. Ami has shown all of us that Down Syndrome is not just a diagnosis and it’s not who she is. She is Amadeus our daughter.
Since Open Heart Surgery she had over come so much. When we were released from the hospital we were released to start therapies. She needed Physical Therapy and Speech for eating once a week. At this point she couldn’t even put her own hand in her mouth without gagging and couldn’t even tolerate tummy time because she had zero endurance or strength. She started therapy late in the game because of our long stay in the hospital for RSV. We had to set a goal and it seemed so far away. I wanted her to be able to sit unassisted and eat her birthday cake for her first birthday. That gave us six months.