Monday, April 30, 2012

Our Second Opinion Dr. Visit

When they told us Belle needed patching again, I wanted to cover all my bases. Its the two words that pop up again and again when your child has a vision "problem" such as amblyopia or lazy eye.

I've read it, I've heard it.. Patching alone is not enough.. She needs:

Vision Therapy.

I've read Jillian's Story and Fixing my Gaze and I absolutely was not against trying Vision Therapy with Belle.

And so, to hear that we needed to patch again - I just wanted there to be "something else" that I could do to know that I've tried everything.  At the urging of Jillian's mom, Robin and others in the Vision profession who follow my blog - I sought out a doctor from the COVD list who provides vision therapy.  Even if insurance didn't cover it and we had to go out of pocket...  If it would help my daughter, I would do it.

And off we went with all her reports from her current doctor - who I do trust implicitly - to have testing and a "sit down" the Developmental Optometrist.

The visit was 'colorful' as my daughter wasn't on her best behavior or cooperating - ever since the last turn of events at the end of March she has acted out in all environments. And, a little girl who was always very cooperative at doctors well - she was challenging.  But, the doctor did all the testing and read all of her current reports and talked and listened to me.

And at the end of the day.. the findings...


1. We could do Vision Therapy but he didn't think it would give her any more than what we are already doing for her.  At this time, he didn't recommend vision therapy for her.

2.  Patching -  we could get the same results in 2 hours a day vs the 4 we are doing -- referencing the studies (that I'm already familiar with) that 2 hours is enough. He stressed the importance of doing valuable activities during patching  -- for example, school work and Video Games! 

3.  We talked about her 'toe walking' which the physical therapist attributes to her being slightly pigeon toed, which she is.. But, I've felt its perceptual and related to her eyes and depth perception issues. He concurred that absolutely it could be her eyes and said that when I go back in about 4 months we can talk about trying a prism in her glasses or for me to ask her primary ophthalmologist about it.

4.  Testing reveals she does have SOME stereo vision which is good and actually an improvement over where she was when we started this journey 3 years ago.

5.  We keep on doing what we are doing.  The most important thing is for her to wear her glasses  and try to get the 2 hours of patching in each day.

 I was really hoping we could do vision therapy or SOMETHING, anything to help her beyond what we are currently doing. However, the good news is that everything we are doing he was in agreement with and so we keep plugging (patching) away!

....Continued prayers for Belle.

....More Hair Dye for me!




We get by with a little help from our friends - Decorated Patches

So, at this point it is so back to basics for us with trying everything and anything to get Belle to wear her patches.  I asked some of Belle's friends - especially older children to whom she looks up to - to make her some decorated patches.

These are some fun ones that Mikayla, her hockey buddy made for her!

These colorful  patches are the adhesive patches from Krafty Patches - a brand of patches that is fully occlusive and also non-irritating to wear.



To learn more about Krafty Eye Patches you can visit our review of them here: http://www.amblyopiakids.com/2010/07/review-of-krafty-eye-patches-fun-eye.html  or visit the

Krafty Eye Patches website: http://funeyepatchkitsforkids.com/


NJ Devils Patch from Framehuggers

As I've shared, Belle has been VERY upset about having to patch again.  So much that she went though her "patch stash" and cleaned out and decided that many of her old patches were too babyish for her now that she is a big 7 year old. 

I reached out to Camille Workman at Framehuggers who has been a lifesaver in the past with her cloth patches that are NO-PEEK aka Belle-Proof. 

She made 2 new patches for Belle, just what the big girl wanted.

Here's her first one that she has been rocking during the NHL Stanley Cup playoff games. Belle gets excited about wearing her Devils patch for her favorite team. 

Thanks to Camille and Framehuggers for helping add a little bit of excitement back into Belle's patching. 


To read more about Framehuggers patches see our review of them at http://www.amblyopiakids.com/2009/05/amblyopia-kids-are-framehuggers-fans.html  or visit the Framehuggers website: www.framehuggers.com

Continued Struggles with Patching

Belle continues to be super combatant about patching. She is really mad about it and is extremely vocal about how she feels. It has been a month of her giving us a real hard time and making those 4 hours of each day the most miserable of her and everyone around her.  Very stressful. 

Her 2 hours at school are going well and occasionally she even gets an extra half hour in at school leaving us just 2 hours after school or dinner and before bed.   Then we just have to deal with the longer 4 hour stretch on the weekends. Belle tries to get us to break it up and then get so busy we forget about it. Super manipulative... Fun stuff!

I pray for continued strength to get through those hours.


Friday, April 6, 2012

Amblyopia is a Bully

Belle has been very upset about having to patch again. She has been very avoidant and hiding in her room..putting herself to bed, crawling into my lap and crying. This isn't the Belle that we know at all, and I know this is probably just her adjusting. It still really stinks to watch her like this.

Belle likes to write me little "love notes" on post-it's. Yesterday after a round of the no's she came out of her room and gave me this little gem.

It says:
I hate Amblyopia
Amblyopia is a bully.

And she crossed out the word love

Tell us how you really feel Belle! Yeah this pretty much sums it up.