Tuesday, May 19, 2009

Our future is so bright...we have to wear shades!

Although I am certain my boys will have a very bright future, the wearing shades part is a necessity! At 5 months of age the Pediatric Ophthalmologist confirmed what we suspected - the boys have inherited an eye condition called Ocular Albinism. This is an X chromosome linked genetic disorder that has effected several males in my family. I won't go into the specifics of the condition, but in short, it will cause them some degree of limited vision, light sensitivity and involuntary horizontal movement of the eye (side effect called nystagmus).

"Ocular albinism in an inherited condition in which the eyes lack melanin pigment, while the skin and hair show normal or near-normal coloration.
The lack of pigment in the eyes causes various vision problems:
-Reduced visual acuity from 20/60 to 20/400 and sometimes as good as 20/25 in African-Americans,
-Nystagmus - involuntary back-and-forth movement of the eyes,
-Strabismus - crossed eyes or "lazy" eye, and
-Sensitivity to bright light and glare."
from the NOAH website

At this first visit the dr. said he thought the boys vision may be between 20/100 and 20/200. We recently went back for a six month follow up and were greeted with a little bit better news. The boys had come a long way since that first visit. It is common for babies with vision impairments to development certain skills a little bit slower. This time the dr. decided that their vision may be closer to 20/80 - 20/100. Unfortunately this is as good as it gets for now. There are no corrective procedures and corrective lens won't make their vision any better than is. We are still holding out hope though! Until the boys can actually tell us what they can see it is only an educated guess. We decided to get a second opinion and went to see Dr. Morgans (Optometrist) at Harrel Eyecare Center in Tulsa. She was great with the boys! She didn't say anything really different than we had already heard and agreed that glasses weren't necessary right now. She did strongly encourage the use of sunglasses though. Because I am familiar with this genetic condition and have the light sensitivity issue myself, I knew they needed sunglasses. I had bought them some, but like most one year olds, they were more interested in chewing on them than wearing them. Kelley, an Optical Specialist at Herrel's, showed us some new baby sunglasses they had just brought back from a trade show. The sunglasses are called Baby Banz. They have a neoprene elastic strap and are made of durable polycarbonate in ophthalmic quality. The lenses offer 100% UVA/ UVB protection and are category 3 lenses which offer high sunglare reduction and good UV protection. We were the first to get these cool shades from Kelly so we are their official "testers". As you can imagine, the boys would much rather play with these new "toys" than see out of them. I have tried to put them on several days when we go on our walks. Since we have had so much rain during the last month I have not been able to get out and try them as much as I had hoped. This week has been beautiful though, so I got the wagon and the Baby Banz out and we tried it again. And....they actually kept them on for close to 10 minutes! The strap is very soft and the frames are a great fit - unlike the other glasses I had bought first. My only complaint so far is that the band will not go quite small enough to fit as securely as I would like. The shades are designed for 0-2 year olds, but I don't see how a baby under one could use them too efficiently. My boys' heads are a pretty average size for a one year old and they are just a tad too big now.

I am really excited that the boys will have something both fashionable and comfortable to protect their eyes while we enjoy all the opportunities the summer has awaiting us!

These pictures were from the first day I tried to put the sunglasses on the boys. I must have put them on a dozon times before I finally gave up and we started our walk.



These are from yesterday! (Excuse the pj's...it was a Monday ya' know!)

Yes, Ashton, the sun is bright! That is what the Baby Banz are for!


  1. I assure you that with persistence and patience - the boys will start to love their Baby Banz and wear them without complaint! I started my now 18 month old when he was 4 months old, and now he does not leave the house without grabbing a pair! They are both adorable, thanks for sharing your story!
    All the best,
    Shari @babybanz

  2. I'd like to second what Shari says. Also, you may find the Baby Banz will fit better if you slip a pad of cloth at the back of the band, to "pad" them out until the twins grown into their glasses. Good luck - we have several children with occular albinism wearing Baby Banz here in New Zealand and their parents are thrilled with the sunnies!
    Kind regards,
    Andrea at Baby Banz New Zealand.

  3. I think Colton needs some. LOL It's really hard to find child size sunglasses that don't have childish graphics all over them. I pick them up when I find them, but I think he's down to just 1 or 2 pairs. Talk to you later!

  4. Your boys are precious! Just a note of encouragement to say I am a 45 year old mom of two grown children. I also have Ocular Albinism. My life has been full and rich and I'm sure this will be the same with these sweet boys. Feel free to contact me if you would like. My blog is

    and my email is pou36@yahoo.com