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A Little Magic & A Lot of Prayer: An Arlo Update

Hello Baby’s First Year! I took the month of December off from blogging at Babble as it was a huge month for our family. Arlo underwent a urology surgery to repair some issues that were discovered shortly after his birth and we packed up and moved into our new home a mere two days before Christmas Eve. To say it was chaotic is a huge understatement.

But I’m back, with a fresh year ahead and some major obstacles and events behind my family. Arlo is all healed up from his surgery, the house is about 75% unpacked and best of all, we got some pretty incredible news from Arlo’s recent Ophthalmology appointment.

This past Tuesday, we took Arlo in for the first appointment he has had with his ophthalmologist since he was diagnosed with Ocular Albinism at 3 months old. I’ve had so much anticipation over this appointment as I haven’t really received any instruction or feedback on what to do next regarding his vision. It’s been a long game of sit and wait it out.

We met with a resident ophthalmologist first and she did some initial tests using a light up, noise wand to get Arlo’s attention. He followed her with his eyes and she moved it around. She commented that his Nystagmus (an involuntary “wiggling” of the eyes that often accompanies OA) had lessened greatly and he was able to hold his eyes still for long periods of time. She then told us that they would be having Arlo’s vision tested to see if we could get an idea of how well he was seeing.

The vision screening consisted of a big white desk and a screen with a rectangular box cut out in the middle. The lady who ran the tests would swap out different panels in the rectangular space — toys, puppets, white slats with different stripes and patterns on them. She measured his eye movements, reaction times, and preference to certain objects/images.

At the end, she informed us that Arlo’s visual acuity (i.e. the clearness of his vision & the sharpness of what he sees) was within NORMAL range for a 7.5-month-old infant. He was in the low normal range but still normal. I can’t begin to even explain the joy that flooded over my husband and I with this news. We have felt for some time that our boy was seeing pretty well despite his diagnosis. He hadn’t missed any of his developmental milestones and while we could tell it might take him a little longer to track or focus on things, we felt for the most part that he could see pretty much everything.

She showed us his score on a chart, with a little box drawn where he scored and I asked for a copy of it. She laughed and said no one had ever asked her for that before, but I wanted to FRAME THAT SUCKER! Seriously, my eyes well with tears thinking about it even now. Her words Normal range! Normal range! kept buzzing in my ears.

Immediately afterwards, we met with Dr.Buckley, a specialized pediatric ophthalmologist who originally diagnosed Arlo and he filled us in on the rest. He felt pretty confident that Arlo would not have many issues with Strabismus (another secondary condition often associated with OA that can cause a turning out or “lazy” eye) and said to us that as far as the spectrum of vision goes for children with his condition, he felt that Arlo had a very mild form of it. He cautioned us that he couldn’t give us a certain confirmation until Arlo was old enough to have more extensive testing done but that he felt that all signs pointed to his vision limiting him very little in life. I had made a list of things to talk to him about “therapy, glasses, tentonomy surgery?” and he assured me that Arlo needed none of them right now. “We’ll see you in 9 months for a general check in” he said as we left the room.

I think back to that original diagnosis. Hearing the words “Probably will never drive a car” “Won’t play baseball” “Will require special considerations — vision aids, telescoping lenses, etc- in school” and how scared and overwhelmed I felt. In the months since his original diagnosis, I have met so many parents and teachers/therapists/doctors who have or work with children with vision impairments and my worries over my sons future lessened drastically. No matter what the outcome with his vision, I began to realize that Arlo was going to have every opportunity of his peers. I learned how many services and tools were available to ensure that was the case and I felt so much optimism about what was ahead.

But this news that his eyes were working far better than expected — that his burdens with this condition will most likely be light — it was the greatest answer to my prayers. (And there have been many of them) It hit me the other day that before we know it, this life we’ve grown accustomed to — meeting with specialists twice a month, anxiety from looming surgeries, digging through medical journals trying to make sense of things, managing several medications and special diets may all come to an end soon. We’ve checked his urology issues off his list, a surgery to fix his heart condition comes next, he’s almost outgrown his reflux and now the predicted outcome for his vision is far better than expected.  There is a very good chance that one day, all of this will be a distant memory.

This experience has provided a huge lesson in perspective. My son has had physical challenges with his body and his vision, but he is otherwise healthy, growing by leaps and bounds, and happy as can be. In the great scheme of life and the challenges faced by many children and families out there, ours has been so manageable… but I have learned to never, ever take the health of my children for granted again.

Arlo has always been my “magic” boy and he has proven worthy of that title again and again. Watching him soar through these challenges and overcome has been one of the most magical experiences of my life. My head and heart feel as if they could explode when I think of the possibilities that lie ahead for him. The future for my son, it appears, is bright and clear.

~M

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