Undiagnosed Eli: “We are Not Going to be the Same Family We Were”

Everything started when our third son, Eli, was four-months-old and suddenly collapsed at home.

We called 911 and Eli was taken to the ER with heart failure and water in his lungs. He was intubated and resuscitated. Eli’s condition was very delicate and the prognosis was not good, but Eli fought through it and slowly started to recover. The doctors soon identified that Eli had high blood pressure. We spent about two months in the NICU, welcomed visits from more than 5 specialists and little Eli endured innumerable tests. We then went home with a sack-full of medications and a blood pressure machine to monitor our baby.

Eli’s first year of life was spent, mostly, trying to receive a diagnosis. We went to the hospital to perform tests, ended up in the ER regularly, and visited doctors with little to no results. When Eli was a year and half old, we took him to a physical therapist because he hadn’t started walking yet. We were told that our son is hypotonic – a condition defined by low muscle tone – so we began taking him to physical therapy every day – to this very day – without stop. Finally, Eli began to walk at 2 years and 2 months old.

Today, our son Eli is 3.5-years-old. He has had three surgeries, sees more than nine specialists, and has high blood pressure, hypotonia, reflux and recurrent respiratory infection.

Our lives have changed tremendously. Thanks to Eli we have learned so many things about life; we are not going to be the same family we were three years ago. We have learned not to judge people and that every tiny moment in our lives should be enjoyed. We don’t plan ahead, we “just do it,” we don’t think about the future or the past, we live the moment. We are always thankful for everything that happens although we sometimes don’t understand it.

Living a life without a diagnosis can be very stressful and scary but, after over two years of uncertainty, we decided that it’s not the focus we want to live our lives through. Our Eli chooses to live, chooses to fight and he overcomes his challenges every day with a smile on his face; happy, and enjoying every second on his life. So we choose to join him, to never give up, and to fight for life with good attitude and positively, not blaming anybody. This is the life that we were given so we will live it to the fullest.
We won’t wait for the storm to pass; we will dance in the rain.