January 2011

Jeff, Ryan and I met with the pediatrician at the end of December but the little guy was so tired he just slept through the entire appointment and the doctor was therefore unable to properly assess him. We returned a month later and again Ryan was quite sleepy. The doctor asked us to take some video of Ryan tracking objects as well as some tummy time shots and to send them over via e-mail. The next day I got "the call". It was January 19, 2011 a day I will never ever forget. The doctor started off saying what a great job we did getting the video etc... I remember thinking he sounds so relaxed and ok with the video. Everything must be ok...nothing is wrong with Ryan...no, not my baby. His next words and those there after caused such a reaction throughout my body that I still don't know how I remained standing. He said, "I have some concerns"...he then went on to say he was setting up appointments for a cranial ultrasound, an MRI of his brain and appointments with a neurologist and an opthamologist. He also said that he wanted to come to the house the following day to examine Ryan. When was the last time you can remember a doctor making a house call? Pure terror had griped every single molecule in my body. Jeff was on "nights" and fast asleep up in bed oblivious to what was taking place just one floor below. I called my Mom...I'm not even sure she could understand anything I was saying through my tears. I then had no choice but to go wake my sweet baby boys Daddy and share the news I was just told.

January 21: Neurologist appointment - We were ushered into a clinic room and spent time with a resident who asked us countless questions about Ryan. About an hour after walking into the room the neurologist came in followed by 4 students all who were so giddy and excited to be learning something new...all who were clueless to the fact that Jeff and I were doing everything we could not to puke from fear all over their annoying little clipboards. The neuro asked us some questions, did a very through exam of Ryan and then sat down to talk with us. He told us he felt Ryan had a condition called Septo Optic Dysplasia. Jeff and I sat there with tears of fear and stress in our eyes and dense looks on our faces. We weren't told much really. The neuro didn't elaborate on the condition as he needed further testing done in order to give a firm diagnosis. Understood but at the time Jeff and I were clinging to every word he was saying waiting for him to give us some sense of relief or comfort. Instead I was in such a state of confusion and terror that I asked such questions like "Is Ryan going to die?". All he could say to us was, "Take him home and love him". Seriouisly, that is exactly what he said to us. Jeff and I just clung to each other sobbing in that damn cold, unfeeling clinic room not knowing what to think. We walked out of the neurologist office literally numb and unable to speak. Four days later we laid our 3 month old Ryan down on the ultrasound table and watched the technician probe around the soft spot on his sweet bald little head taking pictures...he slept through the entire process.

January 28 - Ophthamologist appointment - This was and still is the most gut wrenching appointment we had. The ophthamologist did some initial testing, he then went and got an assistant to help him. Jeff and I weren't sure what to expect even after we were told in great detail what was going to happen. The assistant took us to another room and had me lay our little guy down on a table. She then literally held him down with all her might while the eye doctor propped Ryan's eyes open with these evil looking grip things. The screams that came from Ryan were ear piercing and frightening. I wanted to punch both the doctor and assistant in the face...I probably would have too if Jeff hadn't been there holding me back. Once they were done I quickly scooped Ryan up and we were told to go back to the exam room. I sat in the big black chair with Ryan in my lap while I listened to the doctor tell us that Ryan's optic nerves were underdeveloped. Ok, I rememeber thinking that's okay...to be honest I didn't even know what an optic nerve was at the time. But then he explained and all the air rushed out of my body, I'm sure all the blood pooled down to my toes. The room spun and if Jeff hadn't taken Ryan I'm sure I would have dropped him. He said (and I really don't recall his exact words...just what they meant). Ryan was blind.