Saturday, January 29, 2011

The Problem with Assumptions

I think I must be the Queen of Assumptions. It is not a crown I wear proudly. This time I think it was a truly innocent/ignorant kind of assumption, but I think it's caused some delays in helping Sumana, none-the-less.

I ASSUMED way back when Sumana came home that a pediatric opthalmologist would address any issues that came up with her vision. I thought (assumed) that instead of taking her to Canandaigua, (like the rest of the family), going to Rochester to a 'specialist' would meet her needs. I guess I was wrong.

Sumana and I went to the Association for the Blind and Visually Impaired (ABVI) to get their doctor's opinion about some visually problems she seems to be having. Within 10 minutes I knew the pediatric ophthalmologist had not done her any favors. (As a disclaimer, she's seen TWO different pediatric eye doctors; it's not that I have a problem with either of them, I just found out that they had us 'barking up the wrong tree').

Within a short time we found out that Sumana's left eye is much stronger than her right eye. The strabismus that showed up in October was, in fact, likely due to increased pressure on the fibers running through the optic nerve. The pressure probably interrupted the innervation between the eye and the brain and 'helped' to 'shut down' her right eye (thus, the wandering began). The good news is that Sumana's double vision is a sign that the right eye hasn't TOTALLY shut down yet. With therapy, it can probably be trained to work properly again.

VISION THERAPY?? Until about a week ago I had never heard of it. Sure, there's physical therapy, speech therapy, mental therapy . . . why not vision therapy? I read an article about a week ago in our state homeschool magazine that addressed many questions I had about Sumana's academic progress. I was convinced that her academic problems are largely due to visually problems. AND, I also started looking into vision therapy computer programs. In addition, a friend of mine mentioned she had heard of another child who had just completed vision therapy. Huh . . .??!!! I guess it is out there, just another option I hadn't heard about.

So, back to the pediatric eye doctors: I have been told Sumana's optic nerve atrophy makes her vision uncorrectable. At the most, she was given a simple eye exercise to try to refocus her eyes when the right one strays. In just a short time, ABVI's doctor recommended a developmental opthalmologist. What? That's another thing I've never heard of! And, get this, he's in CANANDAIGUA!! UGH!!! I've been traipsing to Rochester all these years and the doctor Sumana needed was right near us!! UGH!!!

I know this is all in God's timing, but it is rather frustrating to find this out six years after beginning visual tests. I also know, that the incident in October probably made us more aware of her issues and some possible causes.

Back to the ABVI appointment: We also found out that Sumana has multiple blind spots. These are areas that she literally can't see. She called out letters off an eye chart and skipped the same one over and over. This happened in three different areas with one eye and two times with the other eye. I almost feel guilty for getting frustrated with Sumana when she would skip words in a story she was reading. Huh . . . she couldn't even see them! No wonder I had to completely isolate the word for her to find it.

The ABVI doctor didn't give Sumana a full exam with recommendations, because she felt the developmental eye doctor should be our next step. However, Sumana did experiment with magnifiers and prisms and both helped her see nearly 20/20. (That's amazing, considering her right eye tested at 20/80!) So much for not being correctable! She may not wear a traditional pair of lenses, but there are specialized lenses that will definitely help her. Yea!

So, Tuesday morning we go to meet with the developmental opthalmologist. It will be interesting to see what he recommends. It probably will be some type of vision therapy. We'll just have to wait and 'see'. (ha, ha!)

Also, on Tuesday, Sumana will have her annual (or is it semi-annual?) appointment with her pulmonologist and respiratory therapist. We have not used the cough assist machine in six months. I hope we don't regret it, but I guess it'll be a good test to see if she really still needs it. She is so fed up with PT exercises, eye exercises, OT exercises, etc., etc., that I've let the cough assist slip. (She really is developing a very strong opinion and sees great injustice that no one else has to do all the exercises that she does. Forget the fact that it makes her stronger and healthier . . .I guess that doesn't matter to a tween!)

So, I've learned that I need to ask more questions and if I don't like the answers I get . . . look harder to find someone who might be able to find the best answer for Sumana. There are so many new options available today that Sumana's future is going to be very bright. We just need to get her the correct type of help and encourage her to do her best!

Friday, January 21, 2011

Busy Time

As always, we've been on the run. Just to give you an update, Dr. Silberstein (neurosurgeon), is pleased with Sumana's recovery since he placed the new shunt in October. Unless she starts to get unexplained headaches, he doesn't need to see her again for another year!!! Yea!

Sumana does continue to have a lazy eye (strabismus). I thought it might still be related to her shunt because the symptoms began just 2 weeks before her surgery. However, Dr. Silberstein said he does not think it is related. I have seen Sumana's reading progress plateau over the last year. Moving to chapter books has been very difficult for her. Her eye doctor said she has permanent optic nerve damage from birth and her vision is not correctable. Since her vision seemed to test ok, we've just 'gone with it.' Now, though, I'm not so satisfied.

Next week Sumana will have a low vision exam at the Association for the blind and Visually Impaired. I don't know if she'll qualify as visually impaired, but I guess it makes a logical next step. The association has lots of resources available. I've actually had their phone number for THREE years! And I never called! UGH!! Anyway, if they determine her vision is ok, then I'll start looking into developmental disabilities. However, she does much better with books in large (giant, actually!) print, so I have a feeling she has some kind of visual problem. I guess we'll know more next week.

Gretchen goes back to college next week and Jade starts back up with work at the college. I've inquired about part time work at two area libraries, so I may be back working soon, too. Jeffrey LOVES his new 'permanent' bank home and starts additional training in February. Andrew is looking forward to turning 15 in February so he can apply at Wegmans! Gavin is 14 months and is starting to get the hang of walking. Greig still likes his work with Olan Mills, but he's only working 2-3 days a week, so that's a bit rough on the pay check, but it's the season, I guess. I'll try to update when we have more Sumana news. Take care y'all!

Monday, January 10, 2011


Sumana's back pain is virtually gone. She is back to doing her PT exercises and stretches. She has a final electro-stimulation on Thursday. I think the combination of exercise/stretching, e-stim and more movement in general have helped her get past the pain.

She saw her neurosurgeon on Friday and he is pleased with her recovery. She will only see him once a year now! The doctor did not think her 'wandering eye' was related to her shunt, so now we're on to other causes. It's just strange that her eye began to wander 2 weeks before the shunt issues . . . it was better immediately after surgery, but it has been really bad the last month. She sees Dr. Gearinger (eye doc) in February. I've also asked for help from the Association for the Blind and Visually Impaired. She has plateau-ed in her reading ability and I want to find out if it's related to her optic nerve damage, wandering eye, or what?

Her next surgery is April 18th and it will be a VEPTR revision. That means that Dr. Sanders will remove the outgrown rods and replace them with new ones. Sumana is pleased that we were able to schedule surgery on a 'non-AWANA' night so she won't miss out on the fun.