Monday, February 22, 2010

Amblyopia Progress Report - 1 year mark

February 22, 2010:

Well, we went back to the eye doctor today. It is hard to believe that almost a year has gone by since my daughter was first diagnosed with Amblyopia. The doctor reported that my daughter's vision is continuing to improve. At this time we are going to take a break from patching and when we go back in June (in 4 months) - we will be seeing if there is any regression in her vision. Her eye has gotten a lot stronger and with her glasses on she is able to read most of the eye chart. This is better news than I could ever had imagined in just a years time.

With her glasses on my daughter's eyes are straight but when she takes her glasses off - her left eye is doing a little bit of 'traveling' mostly outward. This could end up being surgical, but I'll remain hopeful that it corrects with her glasses (and/or patching).

The hardest part of the visit was my daughter needed her eyes dilated this time. She was so well behaved and cooperative for the assistant to put the drops in and while waiting for the drops to take effect. All I know is that my kid has a great attitude because I absolutely despise when I need the drops and how I feel afterwards - miserable and frustrated. I felt badly because I hadn't expected her to get the dilation today so I didn't have her sunglasses with me for afterwards. So, we'd planned to go out to lunch after but first we had to make a pitstop home for her prescription sunglasses. After a quick bite to eat we just hung out at home and she chilled out with dim lighting and sunglasses - the bright snow outside is actually worse than sunny summer day in terms of light sensitivity. Ouch!

Dilation Photos:
She was goofing around and I forgot to turn the flash off - AAARGH!

So, my daughter goes back to the eye doctor in June. (4 months)

I'm so thankful for continued progress and improvements in her vision.

Monday, February 15, 2010

Prevent Blindness America: Be a Voice for Vision this President's Day

Be a Voice for Vision This President's Day

Prevent Blindness America is ramping up our advocacy efforts for 2010, starting with you at home. In honor of the President’s Day holiday on February 15, we are asking you, our vision advocates, to reach out to your Congressional representatives and request a meeting to share your story with your Member. We have created a template letter here to assist you in requesting a meeting with your representative in the local district office.

Not sure what to say? Prevent Blindness America has put together a list of tips, tricks, and talking points here. Please help us by using your voice to inform your representatives of the eye and vision health issues that can affect us all. Contact your local Prevent Blindness America affiliate to get more involved in advocacy efforts in your state. You can also contact us at Prevent Blindness America (1-800-331-2020) if you have any questions!

Saturday, February 13, 2010

Strawberry Sweet... Strabismus [Ficklets]

Belle loves her Ficklets. Lately she's been wearing these cute little strawberry charms. (Thanks, Ros!)

I love this picture of her taken at a family birthday party - though I've been bummed lately because I (think - well, I know) I now see her left (amblyopic) eye starting to float a bit - especially in photos I see the Strabismus (misalignment of the eys) moreso.

We go back to the eye doctor next week. After scaling back on her patching (per the doctor's orders) I wonder what this appointment will reveal.

Thursday, February 11, 2010

The Eye Patch Project

This idea was shared by one of our readers here at Amblyopia Kids. I love this idea - what a fun way to help kids get over the 'patching hurdle'. Send out patches with a SASE to your friends and have them decorate them for your child. Not only does it help create awareness and understanding for the friend/child who is making the patch - your child gets a one of a kind patch to wear that was created with love "just for you". And, when done - you have a keepsake!

Eye Patch Project
From Lisa G.

When our daughter Abby was diagnosed with severe Amblyopia (20/400) and Strabismus, we were heartbroken. Then, when the doctor told us she would have to wear a patch for 8 hours a day, we knew how hard it would be for her. Our beautiful 4-year-old girl was suddenly telling us she wasn't pretty, that she couldn't look beautiful with a patch on. It broke my heart!

So, I had an idea. I ordered some plain white patches from I printed out my Christmas card list, and wrote up a letter explaining Abby's condition, how to decorate the patches, and what her feelings were. We sent blank patches out to all our friends and family all over the country. I included a self-addressed, stamped envelope in every letter so that it would be easy for people to send the patches back to us.

We have received some of the most amazing patches I have ever seen. My husband says they are "folk art," and I could not agree more. These photos represent just a sampling of the many we have received.

I purchased a post-bound photo album/scrapbook from a Hallmark store, along with some pocket pages that fit 4x6 photos. I also bought some 4x6 index cards that would fit in the pockets. When Abby is done wearing each patch, it gets put on an index card, where I write down who made the patch and sent it to her. In this book, we are also keeping the letters people write and include when they send us the patches. There is so much love and encouragement in there, it has made all the difference to her.

Patches are no longer something that she fears or hates, because each one is custom-made just for her with love and understanding. She actually enjoys putting each one on in the morning, going through her box to choose which one she feels like wearing.
Thank you Lisa for sharing your creative idea. I agree, the patches really are ART and I am glad to hear that your daughter is doing better now with her daily patching.

The Blinding Blizzard

We keep getting hit by snow here at the Jersey Shore.

In the 6 years that I've lived here - this is the most snow we've had. It reminds me of my "home", Rochester NY - except the difference is that they had the resources and manpower to deal with it back in Rochester. Here in this "shore community" the township is trying really hard to keep up.

The kids, of course, love the snow - and have had a total of 5 snow days and several delayed openings. The snow is so bright. I should have sent her outside in her sunglasses.

Tuesday, February 9, 2010

My Travelin' Eye - A Book for kids with Strabismus and Amblyopia

I recently checked this book out from our local library and was very surprised. I expected it would be more about Strabismus than Amblyopia - because of the title. I was wrong, as usual - but this is a perfect example of "you can't judge a book by its cover!". (Although in this case the cover is an adorable little girl wearing some pretty cool glasses!).

My Travelin' Eye is the story of Jenny Sue who has both Amblyopia and Strabismus. The author, Jenny Sue Kostecki-Shaw shares of her childhood and her "journey" with Amblyopia/Strabismus. I love the perspective and found it very insightful in how things may be for my daughter's vision and how she sees the world. Also helpful - it addresses the topic of teasing/bullying and also patching compliance.

Related Links:
Epinions Review of My Travelin' Eye
Bella Online Vision Issues: Review of My Travelin' Eye

Friday, February 5, 2010

I got new eyeglasses from

I got new eyeglasses a few weeks ago from GlassesUSA and am retiring my trendy Versace frames in lieu of a pair that is priced well under $100! Aside from a very slight difference in the frame style - you would never know the difference (see pics below). I've shared before on this blog how I've ordered prescription sunglasses and spare glasses for both my children online. Well, my Versace glasses were starting to see better days - some of the rhinestones were falling out of the front (completely unacceptable!) . I was given the chance to test out a pair of glasses from GlassesUSA and am totally SOLD! Ordering glasses online can save you hundreds of dollars.

When ordering your prescription glasses online you'll need your full prescription including the Pupil Distance (PD) measurement. It will also help to have the measurements from a pair of frames that fit you well so you pick out a new frame with similar sizing. I went with a style that was quite similar to my current frames because I'm a boring person and not real daring but at the price point of under $100 (including the prescription lenses), you can definitely afford to be daring and even buy a few pair. The downside to buying online is not being able to try before you buy and also fitting. However, many of the Brick & Mortar optical shops will do adjustments of glasses even if you didn't buy them there for just a small fee. I'll have mine adjusted when I go in next time with my daughter. Think about this way, even with the price of having them adjusted you can still save hundreds of dollars! Prices on the GlassesUSA site are from $18/pair with free shipping on orders over $99.

I was very impressed with the selection of eyeglass frames at GlassesUSA including mens, women's and Unisex eyewear. The only thing I wish they would add is a children's line! They make their glasses in both New Jersey and Israel and the quality of the frames I received is impeccable. My glasses came very quickly and in a really sturdy hardshell case. Having ordered from Zenni in the past (and waiting a month, inconsistent quality, some frames better than others, thin plastic case) -- GlassesUSA is leaps and bounds better! I was equally impressed to learn that they offer a 100% satisfaction on their eyeglasses and participate in a recycling program with any returned frames and donate them to charities that help provide glasses to those in need.

Can you tell which pair of glasses cost $400 and which pair is priced at $57?

Couldn't tell, could you?

The first pair is the Kim Black style from Glasses USA under $100!.

The second pair is Versace from Lenscrafters $400+

The biggest appreciable difference that I can conclude between ordering online vs at the local optical shop is the money that would be leftover in my pocket as a savings when ordering online.

Savings for Amblyopia Kids Readers:
COUPON CODE for 5% off of your order at use Mommy5 - NO EXPIRATION

Related Links:
Tips for ordering glasses online
Review of prescription eyeglasses
Zenni Optical - the place for inexpensive Kids spare eyeglasses!

Wednesday, February 3, 2010

Happy Birthday Belle!!!

Wishing a Happy 5th Birthday to my daughter.

To the brave little girl who started it all here at Amblyopia Kids

... she is my inspiration and my hero!