Wednesday, January 11, 2012

Liam's Story

A lot of the questions I get (and still have myself) are about what Liam’s diagnosis is exactly. When people see Liam’s eyes start to bounce in their “tick tock” manor they think he is controlling it or somehow making his eyes do the wobbling but that is not so. For people with nystagmus (which is Liam’s diagnosis) their eyes move uncontrollably in horizontal or vertical rhythmic movements. It is permanent as there is not a cure or many treatment options for it but as far as we know it does not get worse like normal eye sight does as we age but only improves with age. For Liam, his nystagmus is horizontal. We first noticed his eyes “shaking” when he was about 6 weeks old, everyone brushed it off until Liam was about 8 weeks old and they were still rapidly shaking. One afternoon Liam came by my work to visit my coworkers with me and as our APN was playing with him she noticed Liam would not track a toy she was offering him. She then pulled us aside and began to examine Liam and his eyes intently. She explained that she needed to get us a referral to Arkansas Children’s Hospital immediately because she was very concerned that Liam may not be able to see. From that moment on our heads were in a spin! The one thing you never want to hear especially as a new parent is that something could or is wrong with your seemingly perfect child. We spent the entire weekend in tears and prayer, stressed to the max! The next week we were off to ACH to see a children’s ophthalmologist. He basically could only tell us that Liam did have sight because his eye structure was fine but that we would not know how much until he was much older. We left unsure of what to do next so of course like anyone would do I turned to Google. I researched everything I could get my hands on for the next few weeks. We consulted some families who had been through the same thing and found some “next steps”. We requested an MRI to rule out any brain lesions or tumors and requested that we be sent for an evaluation to see if Liam would need therapy to keep up with other children when he was older. As of right now we are still waiting on the appointment for both later this month but have had some promising response from the at home vision therapy we have been doing with Liam. He is now 7 months old and can track bright colored toys and plays with anything in sight. We have found that he really likes high contrast in his toys like bright colors with dark backgrounds in books or reflective surfaces. He gets very anxious in crowds like at our church nursery but we assume it is because he relies on his other senses like sounds and such much more than normal infants do. But as far as his pediatrician is concerned we are keeping track very well with his growth milestones so we are staying positive that his nystagmus will not slow him down at all! The bottom line we have found is that Liam is Loved. Period. Whatever comes next we can handle because to us he is perfect no matter what.

2 comments:

  1. One of the worst things about humanity is our fear of that (or those) who are different... More often than not, it is exactly those things and those people from whom we most need to hear and to learn.

    Love you, love Liam and love your soft heart.

    Uncle G.

    ReplyDelete
  2. I actually intended my post above for your blog entry "Be Careful Little....". -Uncle G

    ReplyDelete