I can remember a few years into our marriage, my wife katis started getting some serious baby fever. I knew I always wanted kids but honestly, I still felt like a big kid myself. For most people, the experience of your first child is new and exciting and that was typical of our story at first. When Katis went into labor I remember thinking to myself how blessed I was and anxious to meet my boy. After a night of labor, the Dr. seemed a little concerned and was preparing for a C-section.
I have to admit, I was getting a little nervous as I was expecting her to have one of the sneezing deliveries. When my son came out there was no cry, at the time that was probably the one thing I knew should happen. it never gets easier to relive that moment and no matter what the nurse told me I could see the urgency on the medical teams faces.
Thank God for the respiratory therapist who revived my son after a couple of minutes without a heartbeat or oxygen. To spare every detail of a nightmarish 2 weeks in the hospital, we were finally leaving the NICU, JJ's MRI was normal, EGG was good and they even pushed some genetic testing which came back fine too. We thought everything should be on the way up from here.
JJ was late on just about every one of his milestones, we spent the first year of his life in and out of specialists and therapy offices, my wife would drive him all over town and we never felt like we were getting anywhere. My wife and I really felt led to learning everything we could about natural medicine and alternative therapies. We still kept doing traditional stuff but really saw the biggest strides in our son with good nutrition, Hyperbaric oxygen treatment and a neurodevelopmental program that was extremely difficult and took up a lot of time every day. Our lives really revolved around this child and to our own fault probably sacrificed giving each other the time we both deserved.
We both now see the importance of having some date time for ourselves. For everything we were doing for him, the progress felt to slow. We started looking into genetics, as a means to counter any nutritional deficiencies, we were actually offended if a doctor asked if my son had genetic testing, we were certain everything he was going through was because of his birth. My hope was we would find one of the mutations you could aid with a vitamin or supplement and be hoping this would speed his recovery. Well, Against all odds JJ's results came back and he was diagnosed as the 38th person in the world diagnosed with a rare genetic mutation to a gene called CHAMP1.