Monday, February 21, 2011


Well, with minimal sweat and tears, we have a new van. It is not a twin of my beloved Astro, but it is a good van, nonetheless. We found a 2007 Toyota Sienna in Greece (NY!). It only had 27,000 on it when we got it. It is their base model, but is more than adequate to meet our needs. The doors are light enough that Sumana can open and close them herself. It also has 'quad seating' so Sumana has her very own seat. I like the way she fits in the seat MUCH better than in the Astro.
The Astro, by the way, was totalled. The last pictures I posted didn't look too bad, so I asked Greig to take some more pictures. I've posted one that show fairly well how the roof was smooshed down nearly to the back of the driver's seat. I guess that's why my head and neck hurt so much. Probably any more 'smooshing' and my neck would have broken. Yikes! A very sobering thought.

I'm now working a three-month job at the Red Jacket Community Library in Manchester, NY. I had to work on Saturday, so despite the horrible weather I drove to and from work. I wanted to turn around many times, but I kept plugging along. Even though it took nearly 1 hour (normally a 30 minute trip), I made it safe and sound. By the time I reached home, I felt very good about our new van. It is just a standard front wheel drive, nothing fancy . . . but it handled very well in the snow and wind.

Our latest 'drama' is that Greig was rear-ended yesterday. It wasn't his fault, but it makes another headache to deal with. He so graciously handled my mishap, I wish I could help him with this one. However, he knows all the collision people, so he'll be in a good position to work through this problem. Since his van is 14 years old, it will probably be totalled with just the rear hatch damage. He definitely has some whip lash to deal with, too. Please pray that we can work through this as smoothly as we did my incident.
Also, keep Sumana in prayer. She is very stubborn about wearing her eye patch. I know it's because she can't see much . . . but she needs to try to strengthen the weak eye.

Thursday, February 10, 2011

My poor Big Green Van

This post has nothing to do with Sumana, except that 'her' vehicle was involved. I was on my way to get Jade last night from work and hit a huge section of 8 inch deep, packed snow. I was going slower than usual, but still way to fast for what I encountered. Long story short, I did a 180, went over a steep bank, rolled over completely and landed in 4 feet of snow. Gavin was with me and, thankfully, was well restrained in his car seat.
The roof was ripped down the center and Gavin and I were covered in snow, but no broken glass. We were able to get right out of the vehicle. We got checked out at the hospital and were home by midnight. No cuts, scrapes or broken bones. Gavin seems 100%, I'm just very bruised from the seat belt. I'm so thankful for God's protection. The doctor called it a 'near death experience'. Wow. It all happened so fast, I still haven't processed that part of the event. I'll keep you posted on what happens as far as our transportation for Sumana. She doesn't have many appointments for the next couple of months, so except for my work and Jade's work and appointments, we should be ok for a while.

Sunday, February 6, 2011

Thanks for the encouragement!

I just wanted to post quickly to say 'thank you'. I had hoped not to sound too discouraged in my last post, but I guess it came across that way. I know we've done all we could and done what we thought was best for Sumana all along. It is frustrating to find ourselves at this point. However, it is good to remember that we're finding this out now when she's twelve instead of in five or six years.

Also, there is plenty of hope for treatment, even if her eyes do not improve through patching. I guess the good news is that we can still help her progress in reading. I actually am looking into getting an e-reader for Sumana to enlarge the print of books that are the next step 'up' from where she's at now. At any rate, I'll keep you updated as things happen. Thanks, again, for your encouragement!

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!