Today has been a mix of extreme emotional swings. It is something we have been going through over the last 101 days, but is something that one could never get used to.
Let's start with the highs...I was nervously awaiting Kennedy's neuro sonogram and her doctor knew it. As soon as she had the results, she called my room. The words coming through the phone were like music to my ears..."There is nothing out of the ordinary. Everything is perfectly normal." My smile was as big as Texas and I couldn't get to my cell phone fast enough to share the news with Brian. It was the middle of the work day and I knew he was extremely busy, so I sent him a text. His reply was short; "Yeaa, thank you!" Even through a short text I could feel him breathe a sigh of relief.
Ok, one hurdle behind me for today and moving on to the next...I had a meeting with the Neurologist this afternoon. My stomach was in knots as I paced our room waiting for this consultation. I stayed up late last night writing down all of my questions so that I wouldn't forget anything. I kept telling myself that I could hold it together and be strong. I did, and I made it through all of my questions before the flood poured from my eyes. As I suspected, the prognosis was not encouraging. She said based on his perfect brain scan that was done at birth and compared to his current MRI, the diagnosis is severe Encephalomalacia. This was caused by a stroke when he was so very sick. His frontal, medial and postal areas of the brain are all affected; further saying over fifty percent of his brain was damaged. Based on the seriousness of the damage and the parts that were affected, the average life expectancy is 1 to 2 years. This was not only hard to hear but I could physically feel my heart come through my chest. Even knowing this is all statistical data, the pain we are experiencing is real.
Where do we go from here? Well, nothing has changed from my mindset of yesterday. We are going to do everything we possibly can for our little man. He will let us know what he is capable of through time; we will have extreme patience and get him the best therapy. We will continue to pray relentlessly, and hope to witness yet another miracle from our baby boy. Most importantly, we will cherish every second we have with both of our little miracles.