We've been praying basically non-stop for our Lucy-girl. That her eyes will strengthen and grow and that her vision will improve and that we will be the family and support that she needs through her life. I'm humbled and grateful for the incredible amount of prayers and love that have been sent. Sometimes I find out that someone has taken the time and energy to be thinking about us and praying for us and it just overwhelms me. From friends and family members, all the way to the Stake Presidency in Morgan that my Dad serves with. I believe that there is power in prayer, and also power in the prayers of a group of people all praying for the same thing. (Not that I think that prayer is a popularity contest, but I do think that the combined prayers of people can make a difference in a person's life.)
We have already been seeing miracles as a direct result of those prayers. Within a week of Lucy turning 3 months old, she started tracking objects! We were in California because we tagged along with my parents to visit Matt, Brooklyn, and Baby Juniper, mostly because my mom was worried about leaving me home alone so soon after Lucy's diagnosis and David was gone on a work trip. My mom is incredibly involved and knowledgeable about basically everything child-developement related. She was snuggling with Lucy on the bed in the AirBnb and was holding a bright green sprite (7up?) bottle over her head. Very, very jerkily you could see her head move to track the bottle as it moved across her face. Her eyes were still roaming wildly, but you could see that she could SEE the bottle and was watching it move past her. It was amazing. Since then, you can tell that she can track large brightly colored objects. This is a HUGE step and we feel so grateful for the miracle that this is. (A friend with a similar diagnosis for her 6 year old boy said that he didn't start tracking until he was 5 months old and so I was kind of expecting something like that.)
Leaving Dr. Yeates's office with just the name of a diagnosis written on a business card and the knowledge that there is a huge range of where she could be now and where she could end up has left us feeling a little up in the air. We've started telling people about her diagnosis, but to be honest - we don't really know much. We don't know what kind of albinism. We don't know what causes nystagmus. We don't know if she needs glasses, or how much she'll be able to see, or what her life will be like. We barely know a Wikipedia level of what albinism and nystagmus even are. But my mom has been a huge blessing to us because she's really good at internet researching and has been doing a lot of research into all the things. We are getting slightly more familiar with things and understanding a little bit more.
I called my pediatrician and asked if I could come in and talk to him before our next well-child visit just because I wanted to talk to someone about it instead of trying to figure everything out by googling it. I didn't get a whole lot of solid info because of the nature of there being such a huge range of where she could end up being and not enough information to know where she will land. He was calm and supportive and kind, which I appreciated so much. I asked him about sunscreen and hats and such because I wanted to know what level of tolerance I needed to have. Like, put a hat on her if we are going to be outside longer than 5 minutes? Sunscreen if we'd be out longer than 20 minutes? He responded and said that we needed to wake up, change her diaper, and put sunscreen on her like lotion as part of our everyday routine, then if we are going outside to sunscreen her again. He also said that we should have her wear hats, always, even inside. The biggest reason for this is because she needs to be comfortable and used to wearing hats so that she won't pull them off when we go outside. Hats and sunscreen forever! It sounds a little overwhelming, but really it's just building a habit and once we get the habit formed, it will just be a part of life. That's not really such a big deal after all. And if we can protect our Lucy's skin from the sun, it will be worth it.
(I'll be honest though, I only sunscreened my kids last summer a total of three times - and two of those times were when we were out boating on the water. Even when we went swimming I didn't sunscreen them because they had their rashguard swimming suits and their exposed skin just tanned. Sunscreen seems such a hassle (and honestly, there's a big social media thing about how sunscreen is terrible for kids - so you can either put sunscreen on them and they'll get cancer from the chemicals or you can not put sunscreen on them and they'll get cancer from the sun. I haven't bought into it enough to buy the "special fairy-cream made with rainbows and starshine" that is a hundred dollars and is supposed to be safe for kids. I just use regular sunscreen when we need sunscreen and don't when I don't think it will matter. I'm going to have to do more research into good sunscreen for my Lucy-love though and decide what will be best for her.)
I don't really have a lot more to say. Or maybe I have TOO much more to say but I don't have the mental bandwidth to type it all out. Since Lucy started tracking so jerkily, she's already started to improve. Her eye movements are still shaky and mostly wild, but it's just so relieving to know that she's seeing something. From my "google research" it seems like depth perception is going to be her biggest challenge but we won't know what that looks like until she starts hitting milestones and it's more clear what she can see.
It's interesting because at this point we are just praying and waiting. There's not much day-to-day difference. Lucy is a sweet happy baby and she has the same needs as always. She wants to be fed, rocked, and loved. So I'm focused on that and I'm not really worried about the future at this point.
So we continue to pray for miracles on behalf of our Lucy and move forward with faith and love.
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