Well it has been a year, a year of blogging, a year of putting my thoughts and our life out there. I started this out of desperation in the midst of a feeding crisis with Will as a way to relieve stress and hopefully help others. At the time I had no way of knowing that a couple weeks later we would receive a more devastating diagnosis about Will’s eyes.
One year later Will is a thriving, running toddler who desperately wants to keep up with his brother. His eating resolved itself as soon as we starting thickening his bottle. We are now in the process of getting rid of the bottle. He is clinging to the one bottle before bed with all his might.
As for his eyes, the Nystagmus is still present, however not nearly as prominent. He is learning to hold his head to help minimize the effects and help his eyes focus. Since one of the problems with Ocular Albinism is a lack of depth perception we help him with steps, especially ones that are the same color, like grey concrete. We don’t need any more crash landings than he already does. He sees what he will see and as of now we just have to wait and hope that his eyes will continue to develop normally.
Jack is getting ready to start Kindergarten in a few weeks and is a great big brother. He actually stopped Will from running down the street the other day. His potential diagnosis of OA (to be reassessed in September) was interesting and may or may not impact him at all. He is completely behind his feeding issues. The only way you would ever know he was tube fed and not a typical baby is the small scar on his tummy from his feeding tube.
Overall we are in a better space a year later. Thank you for following our story and I hope you will continue to in the months and years to come.