11:26 AM

So in love with these baby blues




I have had a bit of an obsession trying to capture the true beauty of my baby girls eyes. They are so very magical. The above photos are mostly not even taken by me, I am saving to upgrade my camera, but I still wanted to share.

I know many of you considering adopting an albinism child may wonder about the eyes and the vision component. The most important thing to know is that there is an incredibly broad spectrum when it comes to the vision of these kids and no two patients are alike. There are a few key elements that impact vision; the nystigmus - the vibrating of the eyes as they try to focus, the alignment of the eyes, the light sensitivity all compound to impact the vision. Some of these factors are correctable, some are not, but most are able to be improved.

In observing Elora I thought that her nystigmus was pretty mild compared to videos I had seen online, and also observed that she was not bringing things close to inspect. She did seem to have trouble making eye contact with us when we were on the other side of the room. At her check up yesterday we got good news. Although she is still too young to have an official acuity prescription, our doctor thinks that her vision is top notch as far as albnio eyes go. She is set to be rechecked in six months time, but for now we just need to keep up with the regular store bought sunglasses and the early intervention therapy. Did you know that seeing better is something children can learn? Amazing I know. We were prepared for much more sever vision so we are over the moon with the prognosis so far, I never dared to hope for this.

Everything else in our life is also going very well, with the two naps in full swing we have a girl so happy we can hardly go any were with out getting comments about the sheer joy she glows. She showed us that she was a joyful baby right from the start but this is just beyond measure now. It came as such a surprise since in all of her referral and update photos there were hardly even hints of this smile. Now I am not sure I could get a photo of her NOT smiling. We are over two weeks now since we have had a bad head banging incident. We have managed to get out to play too as she will take a nap in the car or stroller so even though between my two kids we have 6 separate hours of napping.... I feel like I am constantly announcing that it is some ones nap time or be quiet your sister/brother is sleeping. I know this is not forever, she will transition to one nap soon. I also expect we are not out of the woods when it comes to the banging, she is still doing it in a mild way several times a day. It just seems now that I am better prepared to manage it, the swaddle is working for those bad bad times and I have more confidence in her and I and our relationship now so I worry less about my choices in those hard times. I also know her better now and fear less about what it all means and if it will escalate beyond my control. It is easier now to really believe that it's all temporary, I know you all told me it would be, but in the moment I had my doubts, and I for sure thought we might be at this stage for months or even a year.

1 comments:

Catherine said...

Such great news all round!!