A lot of this information I wrote in Lucy's 6-7 month post, but we wanted to add it here in a separate post for ease of looking it up plus expound on a few things, maybe.
We went to our pediatric well check right after Lucy turned six months. She's growing well and although she's behind in a few milestones, we expected that - and truly she's doing really well. Dr. Foster encouraged us to continue to have her wear hats and sunscreen, but other than that he is happy with her growing. Shortly following her pediatrician appointment, we had our follow up appointment with the Pediatric Ophthalmologist that we saw when she was two months old.
Dr. Scott Yates checked her out, did a brief eye exam, and confirmed his diagnosis of Albinism and Nystagmus. He was so pleased with her progress and I feel like it was truly a miracle. He said that at the last appointment he was worried that she would be at the low end of the visual spectrum but that he was relieved that she would be toward the upper end of visual quality of life. He seemed to pass it off as coincidence, but his words from our first appointment echoed in my ears, "If she has any significant improvement - it would be a miracle." By all of my understanding, she shouldn't have improved so much, but she has! Not only is she tracking even small objects, she can obviously see you when you're close. She smiles when you smile. She follows her siblings while they race around the room. She started out with only seeing large bright objects but now she picks up small cheerios off of her tan tray that she's eating on. (The first time she did that, I about cried.) It still seems like she's looking through me when she's trying to look at me and I'm truly not sure what she is seeing actually looks like. Her eyes still move pretty constantly, but it's not as erratic. She's a miracle.
Before Lucy's follow-up appointment with Dr. Yates, she had a blessing. Among other things, she was blessed..
To recognize throughout her life that her eyesight is a miracle from God. For her vision to continue to improve. Blessed with safety- if her vision impairment puts her in harms way she will be protected by those around her and by Angels sent from the Lord. That her development in other areas will continue to grow.
Even just typing that blessing brings tears to my eyes. When I first heard the blessing, I thought that clearly the Lord meant that her improved eyesight is a miracle from God. And I believe 100% that is it. But there is a small voice whispering to my heart that, also, it's her reduced eyesight that is the blessing. This is exactly what she needs in her journey. This is the thing that will bring her closer to her Heavenly Parents and to the Savior and that will help her progress on her journey.
I'm so incredibly grateful for the progress that we've seen, the miracle that her eyesight is, and a loving God that knows her and us and is here to lift, support, comfort, and bless us.
-We went to a second-opinion appointment with Dr. Leah Owens at the Moran Eye Center (connected to the UofU and Primary Children's). They did a slightly more thorough eye exam and were very pleased with what they saw. Dr. Owens said several times that she was relieved because from what we'd told her about her history she expected it to be much worse, but that Lucy's improvement and where she's at right now is very hopeful! (We really liked Dr. Owens and we will probably continue to see her instead of our first OP). She's not convinced that the diagnosis of Albinism is right, so she referred us for genetic testing. Either way, the future is bright for this little light of ours and we are so happy. We won't really know how much the depth perception will affect her vision until she starts getting bigger and can hit some more milestones. But we will cross those bridges when we get there.
I often think this, and probably often say this. But sometimes this feels like SUCH a big deal. And then other times it feels like it's not a big deal at all. Everyone has challenges in life and it's FINE. We deal with them and they help us learn and grow. So even though we are posting about this a lot, mostly, everything is just normal. We will deal with things as they come and we will work through them with faith and have hope that we will be better people in the end because of them.
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