Miracles Still Happen

The first year of my life was the most difficult year thus far. It was not easy for my mom to feed all the formula that I was supposed to take. Since I was on a strict diet that required that I consume so much formula per day, it was very important that I take in the required formula each day. But I was not hungry and I would not drink the formula, thereby getting sick. When I got sick and my Ketones went up, I would start vomiting and my mom will have to feed extra amounts of formula to replace the quantity vomitted. She would sit up all through the night and day without doing anything else except trying to feed me. My dad will take over when he came home from work.

Inspite of that I ended up in the hospital every 10 days. I never made through two weeks without being hospitalised

Finally during my sixth month the doctors suggested to my parents that it will be so much easier to keep me healthy and avoid anymore damage to my brain if I had a gastrostomy (G-tube) tube put in. My parents were scared and had to think and educate themselves completely before they made the decision. They were not going to give up feeding me by mouth, but at the end of the day if I refused to eat anymore then the rest of my feeding was done through the tube.

So my G-tube was put in. The beginning days were okay. But eventually I started developing severe reflux and did not retain much of the food. My parents had to bring me in again for a  reflux study. By that time I was 9 months and was terrified of the hospital. I would scream and cry the minute I saw my dad turning the corner to the hospital. It was harder for my parents to see me go through this, but they had no choice.

After several days of observation, I was prescribed propulsid for my reflux. But right then I contracted RSV (infection) from the hospital and went into another metabolic decompensation. It took one whole month of breathing treatments and more of the IV fluids and medications until I showed signs of progress. When that was done there was a new problem on the horizon - I started showing signs of pancreatitis. This time the doctors did not promise my parents anything. Everybody was silent and went about doing their best. My parents prayed and waited patiently. Only a miracle could save me now, so they held on to faith.

After a whole month and a half I was getting better,there were talks of me getting discharged. Hurray!!! For my parents it was a true miracle. A third birth of their son. They took me home happily once again hoping for better days ahead.

The years that followed were pretty good compared to what I went through the first year. My reflux was still there, but with the help of the g-tube and feeding pump, my parents were able to keep me out of the hospital as much as possible. In the second year, I had a short hospitalization. That's about it. My parents concentrated on my overall development now. I had therapists who came home and worked with me. I loved when people were with me. It was apparent I was quite delayed, but I also showed good signs of progress. I always had a  smile on my face no matter how I was feeling.
I began to sit when I was 18 months and then was pulling up to stand when I was two years. I slowly started cruising holding furniture.
When I was about two and half, my parents decided to take me to India for a visit since no one back home except for my aunt and my grandma who came to help out have ever seen me. My parents did their best preparing for anything that the unknown might bring. However when we went to India, I got sick and I had a hard time recovering. The doctors did not follow the protocol that was sent by the specialists in the US who knew me well. As a result, I had a long hospitalisation with my parents fearing that I will not be able to make it. There was a time when they decided to hire a private jet and fly me back to the US. But by Gods grace, after painful and scary weeks in the hospital, I recovered. My parents flew back to the US with the resolution that they would never take me back again. I had regressed quite a bit after that sickness in India and hence intense therapies were again needed to get me back to where I was. 
When I was almost three, my parents decided to move to California. The main reason being the weather, since winter was the most difficult time for me. That was a good move. I started going to school and I have made great progress after that. Although I am still g-tube fed, I don't have to be fed by the pump. I only take boluses and I am able to go longer periods of time without feeding especially during the night. We go on quite a few vacations within the US. At this time I can surely say that I lead almost as normal a life as everyone else.

Prev | Next