Over the last few weeks Jesse has continued to hit some key milestones in his development. Like most parents, we are of course thrilled to see our little boy grow and develop, but given Jesse's nystagmus and unknown visual acuity, we are even more excited that his development is progressing so well.
Over the last week Jesse has started to sit by himself for a few seconds, reach out and grab toys with both hands, scoot across the floor, and even balance while standing against a couch. All of these things tell us that though his eyes may be moving his visual acuity is good.
How good? Well, we still won't know that for a while. But at least good enough to be developmentally on track.
Additionally, this week we were visited by a vision specialist who is a teacher with the Oakland Unified School District and a program coordinator through California's Early Intervention Program. This program is designed to help young children ages 0 - 36 months who have a visual impairment and get them started with vision therapy as early as possible. This is especially key since a child's vision develops so much within the first year or two of life.
The two ladies who visited were very pleased with Jesse's development and found that he was actually exceeding some of the typical milestones that they would expect from a 5 month old. Phew! In fact, he is doing so well that we collectively decided that dedicated vision therapy would be something that would not really benefit him at this time. Though we will continue to monitor his progress and meet with them again in about 5-6 months, we are happy that his nystagmus doesn't seem to be slowing him down at all.
Over the next few months Jesse will continue to develop and we will monitor his progress. In November we will visit Dr. Lingua in LA and around February we will probably visit Dr. Hertle in Ohio to discuss options. Though we will visit these doctors to understand what they can offer, most likely we hold off on any major decisions until Jesse is older and we can see how much the nystagmus calms down on its own, especially if it doesn't appear to be hindering him at all. We will also have a follow up appointment with Dr. Orel-Bixler in March along with a follow up with the ladies from Early Intervention.
One thing that drives me crazy is how everyone we meet with tells us "there is no cure." I suppose that is true, but it really bothers me how many people aren't even open to the idea of surgery. I know surgeries are risky but such close mindedness, especially in California, displeases me. As a parent I will consider every option before closing any doors.
As we take this wait and see approach, we are optimistic about the future and excited to watch Jesse grow and develop each day!
Part VI: Two For Tuesday