“Oh look Livi!” I would say. Other times I would show Livi a toy, “This is Mr. Giraffe!” If Livi cried while I stepped a few feet away I would say “I’m right over here Livi, Mama has not left you.” With being developmentally delayed, I had barely prepared for visual delays. Processing each diagnosis as they came was challenging, I tried over and over again to not get caught up in the “what if’s.” “What if she cannot see.”
At six months old Livi seen a pediatric ophthalmologist. She was diagnosed with a nystagmus, which is an involuntary eye movement. She was also not tracking toy’s consistently, which was a concern of neurological but also of vision. At her appointment she was diagnosed with DVM, delayed visual maturation. This paired well with the rest of Livi’s abilities. She was growing, but at an extremely slower rate than of those her age. At the time no glasses were recommended, we were informed to return in six months to recheck her nystagmus and delayed vision.
“Livi look!” then turned into “Livi! it is a soft yellow elephant with a long neck, can you feel?!” We were adapting to yet another diagnosis, another confirmation of how our very special baby was indeed different. At this time she was playing with her toes more frequently, if you know Livi or have treated her as a therapist you know of Livi’s toes. The moment she found them, she has made sure they are staying at the end of her legs. She loves to grab her toes; one day in particular she was reaching for her toes and having difficulty keeping them in her hands. Her older sister Mia exclaimed “Livi needs glasses, she cannot see her toes!” The nonchalant innocence of a toddler has forever helped my weary heart.
One of our therapists soon recommended a vision test called CVI, cortical vision impairment. It was previously known as cortical blindness. CVI is a brain based visual impairment, it is diagnosed when abnormal visual responses are not caused by the eyes themselves. Livi’s eye structure appeared normal, but what she was seeing was not properly sending the message to her brain. This ultimately is a neurological visual impairment. The eyes and brain are not corresponding properly.
Prior to her CVI exam we of course were testing her out at home. Can she see this, can she see that? Can she see on the left side, can she see on the right? Then her exam day came. I took her in and I thought she did wonderful. On a scale of 1-10, 10 indicating near normal vision, Livi tested at a range of 3-4. It was expected with therapy and visual modifications that she could have more consistent and purposeful looking. It was worst than I had thought. Once I received the final results I was devastated.
But then, morning came. The sun was up, it was a new day. Now was not the time to give up or accept that Livi could not see well or process what she could see. Now was the time to work. Our therapist recommended black backgrounds, and bright objects. This would help improve her ability to focus. There were books made for Livi to see. First you start by showing her a big bright picture with a black background. Then you move on to show her some of the surroundings beside the bright picture. This would improve her visual acuity. Her therapist brought in many ideas and supplies to help Livi. And help Livi it did.
Over time Livi started reaching for toys. At first I held my hand on her chest, and she would ever so slightly pull her hands to center and grasp the toy. Weeks later I held the same toy out a little further, and she reached. The distance between Livi and her toy grew, until Livi was fully extended reaching for her toy. Livi was again growing, gaining strength. This time visual strength.
The time came for her six month follow up ophthalmology exam, Livi is now one year old. Her nystagmus is completely gone. She was diagnosed no longer with delayed visual maturation, but a slight visual impairment. This meant corrective lenses. Excitedly we went to have her fit for her very first pair of glasses. When the glasses came in, we tried them on. Immediately both her dad and I noticed a difference. A difference in her demeanor, at her gazing, at her interaction with nearby toys. Livi could see.
Over and over again we remind ourselves of how far she has come. At 3 months old she did not cry, wore oxygen constantly, did not track toys, could not hold onto anything as her hand would not grasp. At one year, just one year, Livi is now grasping and shaking toys. She requires no oxygen, she cries, oh she cries. She is laughing. She has overcome so much in her one year; she is continually defying odds. Livi reminds us to take life slower, to be thankful for what we do have, to encourage one another, and show kindness to everyone no matter what “smile” they may be showing.
Livi, “Liv”. To live and to love. We were created to do just that.
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