Alex's SMILE

When we were expecting Alex, I took for granted the complex process of creating a life. I had assumed we would be given a healthy child if I took care of myself when pregnant. Maybe we thought this because we had not lived to see otherwise, no lessons had been learned until Alex taught us on October 19th 1999, sometimes we can't predict everything. When Alex was placed on my chest for the first time, I looked down at him and thought I was hallucinating. (labor is quite the painful experience) Steve, looking like he was in a daze, not saying a word and then I heard my mom say "he's going to be OK," I quickly realized this was not a hallucination, they saw it too. Over the next hour we were fed a great deal of information, so much that the majority of it was not secured in my memory bank. His medical diagnosis was Cleft Lip with a Bilateral Palate. His NG tube was inserted so he could eat and then our families began to file in. The one thing many of them had in common was the tears welling up in their eyes and instead of a moment of excitement, it became a moment of uncertainty. Questions we all were asking, what was life going to be like for him? Is he in pain? How can we make this better?  The only question I wanted an answer for was what did I do wrong? I had read the pregnancy books, I had gone to my doctor appointments and I had taken my vitamins, so why did this happen?

Over the next few weeks we were educated on what to expect in the following months. He would require two surgeries prior to his first birthday, we would be heading to the University of Illinois at Chicago, he would be put through a series of tests and moldings, the NG tube would be removed and he would be getting a special bottle to feed from. Before we knew it, we were preparing for his first surgery which would be when he turned 3 months old. His reconstruction would come in phases and the first would be forming his upper lip. Everything about that day was textbook, we arrived early, we sat around for a bit, talked briefly with the surgeon who we had only seen one time (along with 20 of his students) and off he went. When we would see him next, he would have a lip! When the nurses came in and let us know he was out of surgery, they allowed one of us to go back and sit with him in the recovery room. Of course that was me! I walked back looking in every room trying to find him, and I remember passing a room with a little boy crying frantically and a nurse trying to console him. I kept walking thinking about that poor bug. A few steps later I realized, that was my bug! His face was so swollen that I didn't recognize him. A few days had past, we headed home and started to prepare for the next surgery, his palate.

We were not entirely happy with our experience in Chicago and found out about another surgeon at Children's Hospital in Milwaukee, Dr. Gosain. Our first visit with him was as different as night and day. He was our educator, he took his time and answered all of our questions, he approached our situation much differently. He knew we had questions and concerns and he made sure we left him with ease. We learned from this experience that as a patient, we never have to settle on a doctor, we have choices and go with our gut instincts. We are proud to call him Alex's surgeon.  The next several surgeries went great, Alex was in GREAT hands! Then the letter came...Dr. Gosain was heading to Cleveland OH. I panicked! Alex had one major surgery coming up and with our past experience, he had to be with Dr. Gosain. So, we packed up and headed to Ohio for Alex's bone graft surgery.

His bone graft was the last of his major surgeries and then he would be getting a lengthy break. This was a little more complex as they would be taking part of his hip and creating a gum-line for him. Rainbows and Babies in Cleveland was as amazing as Children's in Milwaukee, if not better. We were assigned a care manager who walked us through the hospital campus, gave us all a great understanding of what to expect during our stay there and connected us with the Ronald McDonald house. This would be our temporary home after Alex was discharged, while waiting for our follow up appointment to get the clear to head back to Wisconsin. 
This was a trip we will never forget! We had to arrive a few days prior to surgery for pre-op work which left a couple days of exploring Cleveland. We explored the Cleveland Metroparks Zoo, did you know Gorillas like Taco Bell hot sauce? Alex still gets a chuckle out of seeing the Gorillas eating the sauce out of the packets. We also were able to get some swimming out of the way, after surgery, Alex would not be able to swim for a while.

Surgery day went smooth, and he was released after two nights. I must say, the Ronald McDonald House was a life savor! I strongly encourage you to donate if you can, the simplest of donations can be collecting pop tops or preparing a meal for the families who call this place home. Not only did we have a room to stay in, but we had meals provided for us, Alex was able to meet and play with a therapy dog, participate in arts and crafts and he left with a special toy from the toy room. During our time at the Ronald McDonald House, we were again reminded to be fortunate that the only thing describing Alex as not "normal" was a diagnosis that is not life threatening and fixable. For everything that could go wrong with a child's health, we are fortunate to only be dealing with Cleft Lip and Palate.

Alex is currently in his last phase of orthodontia, which will leave only two more surgeries remaining. The next BIG event... After 9 years of braces, they are coming off in June!