Wednesday, February 29, 2012

Don't Call Me Four-Eyes!!

At our last ophthalmologist visit at ACH, Dr. Dimiceli explained to us that even though glasses do not fix Ocular Albinism or Nystagmus and generally they do not help much, she did want us to try them out.  She said in Liam’s case they may help bring things closer to him by enlarging them some, like a magnifier would, so that his eyes can better lock onto them.  She told us that Liam’s best vision would be within five feet or so and that the things that are further than that would be too small for him to focus on.  She was all about enhancing what vision he did have by making everything bigger so he could see farther.  She gave us a prescription and told us to try them out and report back at our next visit in three months. So we went to Patterson’s Eye Center in Conway and picked out a dark gray color for his frames in a brand called Miraflex Glasses.  (For more info see my link to the Miraflex website to the left) They are flexible, bendable, and virtually indestructible frames for infants, toddlers, and active adults. We even got them with transition lenses so that we would not have to alternate with sunglasses when we go outside.  So far, Liam has managed to leave them alone after he adjusted to them and he definitely seems to be able to see to grab smaller objects whereas before he looked right over them, missing them completely.  He smiles at us from 6-10 feet away so we know he can make out enough to know who we are which is amazing! Before if you were more than two or three feet away he had difficulty determining who was there without help from noises or voices.  Of course when we got the glasses we had to show them off in style so we did a big photo shoot with our family photographer (Robert Hinson aka PawPaw). Here are a few of our favorite shots!

Wednesday, February 22, 2012

High Contrast Books

This week Liam’s GiGi (Brian’s mom) found some great books for Liam at Kohl’s that are great for visually impaired kids. (They even have stuffed animal characters that you can buy to go with the books!) Each page has only one image on it that stands off of the white background because of its bright, solid colors, and sometimes the image covers the full two pages.  We flipped through them with Liam and because they are so large and each picture stands out so much he was able to really see them well.  They are all available to buy online as well as in stores.  Here are some pictures to illustrate what I mean about the contrast in colors needed for visually impaired kids to see. (Any books similar to this would work great you just want to look for something with good contrast so that items really stand off the page!)

This book series is by Eric Carle who is most famous for his book The Very Hungry Caterpillar.


Sunday, February 12, 2012


We recently have been on the lookout for toys and things that are very visually stimulating for us to use to teach Liam. We know that kids with nystagmus usually see things best on dark backgrounds or with high contrast colors such as white on black, red on white, yellow on green, etc. So as Brian and I shop for toys we are always on the lookout to find these high contrast toys. Recently, we have found a great company that sells high contrast puzzles called Melissa and Doug. Below are some pictures of the puzzles we found locally but all of their toys and puzzles are available online and on Amazon. The puzzles we bought are on black backgrounds with big thick brightly colored wooden animals and are easy for Liam to pick up. They are called My 1st Chunky Puzzle and have all different animal themes. Great for any child visually impaired or not!


pictures underneath for easy placement learning

For now Liam just wants to chew on them but that's a start!

Thursday, February 9, 2012


In all of our research into finding out what could be causing Liam’s nystagmus we ran across several conditions that could be our answer.  We quickly began asking for referrals to different specialists and departments to start the process of eliminating each, one by one.  Brian and I sat down one night and discussed them all and what we would do for each possible one, and I vividly remember praying and telling him and God that I felt we could handle anything as long as it wasn’t Ocular Albinism (because of how much worse I knew Liam would be in for with his vision if it were OA).  BUT, I have learned that God doesn’t always ask us before he deals the cards, he only promises that he will never give us more than we can handle and that he is with us always.  So when the words “your son has Ocular Albinism” flew so easily out of the ophthalmologist’s mouth, my heart just dropped to the floor.  I knew this meant Liam’s vision was going to be a lot more difficult than just his nystagmus but at the same time, part of me was at peace knowing we FINALLY knew its cause and what was affecting our child.  Most importantly, we now knew how to HELP him.  We finally had some answers! Now, because of my refusal to accept the possibility of OA, I had not researched it nearly as much as all the other possibilities.  When the doctor left us for a few moments we quickly took out our phones and researched to find what questions we needed to ask.  Dr. Dimiceli (our ophthalmologist) was very patient answering all of our questions and because Ocular Albinism is genetic (meaning it was passed on to Liam somehow and can possibly be passed on to our other children) she got us a referral to the Arkansas Children’s Hospital Genetics Department to find out which of the 4 types of OA Liam has.  She told us it would be important to cover his eyes from the sun as it could/would be very painful, to a degree, for Liam and until he could tell us just how much, it would be best to cover them with sunglasses.  She could also tell from the discoloration in Liam’s fovea (part of the back of his eye) that there was some vision loss that she wanted to try and correct with glasses.  So Dr. Dimiceli tried a few lenses and came up with a prescription for infant glasses called Miraflex (basically indestructible) for Liam to wear. (Which we had made with transition lenses so we wouldn’t have to constantly remove them and replace them with sunglasses when we go outside, instead they will automatically change when he gets in the sun or bright light.)  She told us Liam’s case could be mild because of how few clusters of holes there where in the pigment of his iris but we will not know for sure until he is older.  She confirmed that besides following up with genetics (because one or two types can come along with color or night blindness and deafness issues) that we as parents were doing everything for him we were supposed to be doing and that she would be following him closely every 3-6 months until we nailed down a good prescription for his glasses.  Now there is currently no cure or treatment for OA or Nystagmus but there are some great test studies being done to try and heal or replace the pigment in their eyes to restore as much vision as possible.  Hopefully/Prayerfully, 10 years from now or so there will be a cure.  As for now, we will continue to do Liam’s vision therapy and follow up with genetics in April but we are finally relieved to have some answers to share with our family and friends.  I’ve added a page above on our site for Ocular Albinism that has general information for the disease that I’ve collected from other sites to really explain what the disease is, and STAY TUNED—we get Liam’s glasses in next week and are having a photo session to show them off! Will post pictures soon! I've also posted a video from google on our videos tab (see top) for an idea of how someone with Ocular Albinism and Nystagmus see. (Warning: it can be rather upsetting to watch!)

Wednesday, February 1, 2012

New and Improved Highchair

For kids with nystagmus it is often difficult to grasp small objects because with their rapid eye movements they cannot keep locked/focused on the object. When we started Liam on self feeding he often times could not hold focus long enough to guide his hands to the food pieces. We were sitting at the dinner table with my mother in law when I mentioned if only the highchair tray were black maybe with the strong contrast he could more rapidly return focus to the food fast enough to grab the pieces. We joked about there being no kid safe paint since Liam chews on everything and it wasn't until the next day when my mother in law showed up at our house with a great idea. She had bought a roll of black cabinet liner ( the non slick stuff you put down in cabinets and drawers to hold your dishes in place) and had cut it out in the shape of the inside of the highchair tray. ( it sticks very well to the tray but peels up if you want to remove it) It worked perfectly! I even did the cup holders to give him some practice with depth perception ( he has to reach inside for the food). With the black background all his small treats are easily visible and he has been working hard to pick them up and feed himself. I advise anyone (not just parents of vision impaired kids) if your child's having trouble in this area this is a cheap fix ($2) that might help like it has us! Below are pictures of Liam's new and improved highchair tray.