Part 1

Five years ago, a ginger haired baby boy was born. He joined two older siblings almost 4 and 3 (14 months apart).  I was still a young mom and  I could not imagine having 3 children to take care of and a husband who was active duty military. But, as all mom's do, you just figure it out.

He had mild complications with his birth due to meconium aspiration following a c-section, but he got to go home with a normal bill of health. At two weeks everything went well and he really was a easy baby. Almost never cried, slept through the night and all the house noise. At four weeks old, his big brother was hospitalized with Reactive Airway Disease and failure to maintain oxygen levels. Dad and I took turns switching at the hospital. A nurse who saw the baby when we were switching said he looked and sounded as if he, too was having issues with his breathing. She sent us to the ER downstairs.

From then on began our "mystery diagnosis"... Ty did not get hospitalized that day, but it did begin the quest to find out what was going on with him. At first they were convinced he had Cystic Fibrosis... waiting, waiting and more waiting when finally it was negative. I should have known that it was negative because I kept licking him to see if he tasted salty ( I google alot and must have read that somewhere). 

Next, he had constant URI and some ear infections. Poor little guy was poked and prodded constantly. All the while he seemed to develop normally... However I called him floppy baby and not one doctor or nurse picked up on it. At 6months I knew he should start sitting. I also was quite aware that babies develop at different rates, but I could senses something was not right. I assumed he must have his equilibrium off due to constant ear infections (probaly read that somewhere, too). I then bought a bumbo chair - which at the time did not get all the attention it does today. I found it online and called ironically, the town where I was born that made the chair. I got it, put him in it and he just could not hold his head up. I then did tummy time all the time. It really never helped.

At 8 months I made an appointment (my military part of the story will have to take a different post), I went in and saw a resident, he said babies develop differently, he tracks, he smiles and he looks normal mom. Then, in came a off post doctor training the resident and she did an exam. She then excused herself , asked the resident to step out and me to wait.

She then came in and the resident took a back seat. She asked where my husband was and wanted him to come join us. In the meantime they rushed us to draw labs. I could tell something was up, but I did what I needed to do. After the labs were drawn I went back to the room. My husband had not made it, but she explained she was very concerned about Tyler due to his respitory illnesses, his low muscle tone and failure to thrive.

At the time I had no idea what she was talking about. I only knew I did call him floppy baby and I knew he missed his milestones. She explained she drew labs for a CPK and they came back high. She wanted more labs immediately and for us to get to Atlanta to see a neurologist and developmental pediatrician. She suspected he had some sort of muscular dystrophy. She also put in immediate consults for physical, occupational and speech therapy - both private and educational. I think at this point I was just going through the motions.

She then talked to my husband and I together. She explained the many causes that it could be, but really it would be a waiting game. She was concerned for our whole family and offered many support references. At the time I could not imagine what was happening and I really did not want to wait.

I wanted to know right now what was going on. What all of this meant and how his future would be. My husband did, too. I remember he took the remainder of the day and we went to the park. He told me not to cry and be strong for our kids. This seemed impossible... but we made it through the day. We worried and wondered. The next two weeks were filled with appointments and people coming to the house.

I could not wait to get to a doctor to tell us what was wrong. We went and they set up more appointments. It seemed like an appointment to gain a appointment. I was sooo frustrated. Then every little thing Ty did would get me worried and wondering what was this.