One year later
Blogging, Jackson, Vision, William

One year later

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.

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0 Comments

  1. Christina says:

    Hi, I know how hard it is to imagine your children not being able to grow up as a normal child. My son has OA and will be turning 15 in January. He has accepted that he will probably never be able to drive and that playing any sort of ball games is pretty much out of the picture form him. He loves music and is learning how to play the guitar and is getting pretty good at it. He’s a great kid and has a lot of good friends. There have been hard times over the years. More with teachers in school not understanding the severity of his eye sight because he appears to be quite a normal child. In the past I’ve printed off a lot of information for each teacher and explained what OA is to each of them and most have been very helpful. I see that you are in the Washington area and I wanted to let you know that the Washington school for the blind helps children with OA and will send a representative to the childrens school to help the child and make sure that things are going well and that the school is doing all it can to help the child with their education. Our son has a 504 plan and an IEP (Individual Education Plan) which also gives guidelines that the teachers must follow in the classroom. Good luck and your boys sound wonderful.

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