Wednesday, March 30, 2016

Expectations

I try to not have too many expectations. With no expectations my mind and heart can't fail me, or let me down.

When Scottie's long awaited ophthalmologist appointment was approaching, the one we waited six months for, I let my guard down. I made a mental list of my hopes and hopes-nots. I told myself she could see well, she probably didn't need glasses yet, and maybe we would have to patch her eyes to help the alignment, but not surgery. I said it to my husband, to my friends, to myself. I didn't want her to have surgery so young. I set myself up.

It's a good thing we trust her Doctor because he said everything my heart feared. Scotlyn, at nine months old, is very, very near sighted. "Very bad, for a baby one even one", the doctor said. She got a prescription for glasses that very day, about -6 in each eye one a little different than the other, but almost the same and surgery "right away, in the next six months" for alignment. The good thing is that her eyes are almost the same strength, so when one focuses the other turns in, but they both do it, which I guess is good.

Glasses. "Finding frames would be the hard part", the doctor said and they were. We wanted Miraflex frames because they bend and are lightweight with no screws, or anything to minimize breakage. I called around until I found a place that carried them and went in very prepared knowing the exact which two frames were for her age group for her to try on and simply put, it was a nightmare.

The first person we dealt with was a ding bat, not listening to our needs, and trying to get my screaming terrified baby to try on every  damn frame they had. Eventually another woman took over who ended up being amazing and brought in two frames in the color we picked and it was very obvious which frame suited Scottie the best. Then, they tried to take measurements and couldn't because she would not stay still and because of her nystagmus.

The glasses took about two weeks to come in and we got the videotape ready only to have Scotlyn pull them off and cry. Then after her nap we tried again and it has been really quite amazing ever since. She will pull them off when she gets tired, but most of the time she leaves them on and she even tries to put them on herself. I think that the glasses do help slow her nystagmus and we have noticed small changes in her vision like not bending down as close to her tray to find her food. We also got grey transition lenses put in and that by far is the best feature. My little moon baby who used to bury her face in me every time we went outside now laughs outdoors and loves walks and playing in the yard. It. is. AMAZING.

We go back in three weeks to report on the glasses and schedule the surgery. I am sure it will be harder on us than her and I sure hope so.

















8 comments:

  1. You are the sweetest soul. Scotlyn is so lucky to have you for her mother. You're beautiful and so is she. xoxoxoxo Sending love your way my honey.
    Yum

    ReplyDelete
    Replies
    1. Thank you YUM. Can't wait to see you this summer xoxo

      Delete
  2. Hi kade, love reading ur post bout scotlyn. My daughter who is 6 mths now has ocular albinism. She is also scheduled to see her eye doctor when shes 9 mths as well. Just wanted to know, what is the surgery for. Is it to reduce her nystagmus or improve her vision? Thanks!

    Dayana
    Alana's Mum, from Malaysia

    ReplyDelete
    Replies
    1. Hey Dayana! Thanks for your message. Scotlyn was first diagnosed with OA as well, but did they tell you that OA is most common in boys, so it's more likely she has a type of OCA? The surgery is to help the alignment of her eyes. So, when she focuses right now one eye is straight and the opposite eye turns inward, they both do it at different times. We didn't get a lot of details about the surgery at our last appointment, but we go again April 20th to learn more. It's my understanding they tighten the muscles around the eyes so that they don't turn inward, but it isn't for the nystagmus and won't correct her vision per say although it would be great if it helps that as well and with both eyes able to look straight ahead at the same time I'm sure it will help her seeing! Keep in Touch I really love connecting with other moms, it helps us stay sane and know we're not alone in this!!

      Delete
  3. Hi! Scotlyn is just adorable. Such a cutie! Loved reading this post. My son, soon 1 year old, also has OCA and got his glasses around the same age as your daughter. He also leaves them on almost all the time. I guess we did that job when learning him to keep his sunglasses on.

    Kristine, from Norway

    ReplyDelete
    Replies
    1. Hi Kristine! I'd love to hear more about your little guy & see some pictures! Thanks for taking the time to connect xo

      Delete
    2. Likewise! Do you have an e-mail address?

      Delete
    3. Yes! ourlittlepeace@gmail.com :)

      Delete