Tuesday, February 1, 2011


"If I had seen her when she was 4 or 5, I probably could have helped her. I'll still try, but I'm not very optimistic." That's pretty close to a quote from Sumana's new eye doctor. UUGGGGGHHHH!!! Hello . . . .!!! Sumana had her first eye exam within 4 months of coming into our home and we were sent to a pediatric eye doctor. Like I ranted in my last post, I thought that I was doing what was best for her . . . taking her to a specialist. Now, 6 1/2 years later we find out that something more could have been done. I know God has used circumstances and different doctors and friends to lead us on the paths that we have taken for Sumana thus far, but when you hear what we found out today, I think you'll feel my frustration.

Sumana had test done today that she has NEVER had done before. I guess some of the tests are usually only done on adults, but none-the-less, as she completed each one, the doctor was able to get a much clearer view (pun intended), of how Sumana's eyes function. First of all, on a standard 20/20 scale, her right eye tested a bit better than last Friday: 20/70, left eye was a shaky 20/25. Not much new there, BUT the doctor did a depth perception test (you know the ones that have a lot of dots and you have to tell what picture pops out at you??). He quickly found that Sumana has NO depth perception! ZERO! Unbelievable!

Here's a side note so I can beat myself up a bit: Sumana has the classic habit of reaching up onto 'my' counter of junk to reach something that is hers. Usually her stuff is in the middle of the counter behind a bunch of other junk. Inevitably, sh knocks a ton of stuff off the counter; once it was a vase of flowers . . . what a mess! Well, I'd usually 'yell' at her and tell her to be more careful. Guess what? Everything must have looked like it was lined up to her, not in front or behind what she wanted. I'm trying not to feel too guilty, but I do feel bad to find out that it wasn't poor motor planning or impulsiveness that caused the accidents . . . she literally didn't see the depth of the objects.

On to the exam. The doctor also did color testing. He was 'gushing' about how girls are so good at telling colors and boys aren't. Sumana's left eye did great, however her right eye has a hard time distinguishing the color red! Unbelievable!

Now, as far as the 'lazy'eye that started this whole quest in October: He reconfirmed what the ABVI doctor said about double vision being a good thing. It shows that her right eye is still trying to function. It hasn't totally shut down. When he looked at her optic nerve he saw optic nerve pallor (pale color--not much blood flow) and optic nerve atrophy. He explained the the central nervous tissue does not regenerate like normal skin does. It doesn't grow back. That's why he's not real optimistic about getting much improvement in Sumana's right eye. (By the way, that damage probably happened at birth. Further damage could have happened in October. He hopes to retrain the newly damaged nerve to restore some of her focus).

The doctor also did a visual field test. It tested Sumana's peripheral vision. Not surprisingly, the left eye tested quite well. However, the right eye test indicated she was blind in the right eye. We know that's not true, however it does suggest that she has A LOT of blind spots in her right eye's field of vision. UNBELIEVABLE!

His plan of action is to have Sumana wear a patch over her left eye 30 minutes in the morning and 2 hours in the afternoon or evening. He hopes to force the right eye to re-engage and improve her 20/70 vision. As long as he can get improvement, we will continue to patch the eye. Once he feels we've reached her best possible vision, he'll start to work on methods of correction. Despite what other doctors has said about Sumana's vision not being correctable, THIS doctor corrected her vision TODAY to 20/30. So take that! (can't you FEEL my attitude tonight??!!!)

The sad part and potentially telling fact, though, is that when Sumana used the patch tonight she could not see where she was going. She kept asking where things were so that she would not bump into something unexpectedly. It was so hard on her that she only wore the patch for two 10 minute tries and one 5 minute try. I'm hoping she can progressively get used to the patching; however, this initial try has us so overwhelmed that it's hard to believe you can get something back that's not even there. I guess the amazing part is how her left eye has taken over to help her function so normally. God's amazing design. If Sumana never gets any improvement, at least she has what she has now and we know it's worked for her so far. Who would have thought her right eye was so bad?? Why didn't any other doctors ever notice this???? Unbelievable!

So, we're trying the patch 'thing' for 2 months, then getting a re-check with this doctor. Then, he expects another follow up 4 months later. At least we're trying to address this issue now and not much later. She is reading at a 3rd grade level and has reached a standstill because of double vision, blind spots and general blurriness. I'm going to look into reading materials that have large fonts and lots of white space. I know of several possibilities. Maybe if she can read increasingly more difficult passages in this format, she can progress with her reading even while we're trying to figure out this eye puzzle of hers.

Well, I've rambled enough and didn't even touch on the horrendous roads this morning or Sumana's appointment with her pulmonary doctor. Suffice it to say, she's doing well. She needs to restart her cough assist exercises and needs to resume using her inhaler spacer to ensure she gets all the aerosol into her lungs for the most benefit. Her lungs are about 50% the size of a comparably sized and aged child. Her doctor wants to increase the muscle tone around the lungs and force expansion of the lung cavity to increase her potential to knock out viral infections and to give her the stamina she will need to continue walking (and other activities) as her body grows. I think it is lung capacity numbers that started around 30 percent and now she's up to 52%. Definitely better, but it needs to get much better. She still is diagnosed with restrictive lung disease. That's it in a nutshell! Good night!


  1. Wow Cheryl! That is a whole lot of new info for you to digest. Certainly frustrating!!!
    We tried patching with Cara for about 6 months, well in all honesty, we didn't give it a good try. I think with Sumana being older, she will do a good job with it. There isn't much convincing a 2 1/2 year old to wear an eye patch:( When you get a minute, please send me the info on this new eye docotr. Starting to doubt what we have been told...

  2. Don't beat yourself up about it too much. You have certainly been proactive in getting Sumana help. Also...you are discovering it now while she is 12...not 18!

    I wonder if an e-reader might help with reading. You can increase the font sizes of the books you choose for them.

  3. Oh my goodness, Cheryl! What a load! I will be praying for both you and Sumana as God walks you through this! We too have walked this road - the "experts" that led us down wrong paths. It is so frustrating, but God knew all of that from the beginning. He also provided the drs to find it NOW while there is still time. Trust Him to use this for His glory! I too have beat myself up on occasion but that doesn't help anything. It just brings you down where the enemy wants you. Allow God to build both of you up through this! (((((Cheryl & Sumana)))))

  4. We tired the patching w/ arjun too. Did'nt seem to help but the glasses do.
    Have you looked in Irlene Syndrome where they test the child using color overlays that help w/ tracking. Chase was in a school and they tested all the kids each had a different colot overlay to use when they read.It made a big difference for him