“His optic nerve is pale and visual activity is poor. The next step is more testing. I’m sorry I can’t give you a more definitive answer right now, but I’ll see you in four months time.”
These [paraphrased] words were not what we were wanting to hear when we took our almost five month old son to an ophthalmology appointment yesterday, but reality doesn’t care about what you want to hear. We have known ever since the diagnosis of hydrocephalus from a grade four bleed in the brain while in the womb that there was likely, medically speaking, to be some effects from the internal brain injuries during the developmental stages. The neonatologists even went as far as to say there was a high likelihood that the resulting impact would be fairly severe, given the serious nature of what occurred somewhere between 20 and 32 weeks. I remember asking about whether his hearing or sight would be impacted on the day when they broke the news to us about the likelihood of hemiplegic cerebral palsy on the left side of his body. I remember the horrible feeling when they said “we don’t know”. Fast forward several months. He has been through so much and bounced back from all his surgeries so well that it became tempting to think perhaps we were over the biggest hurdles. The last couple of weeks though, I’ve felt squarely back in the land of many unknowns as far as what lies ahead.