Taking a New Look at Things

Boy, I think I should just call it a day after thinking about a title.  Or just post a date like lots of my fellow bloggers do, but I do love a good title.  I have a feeling though that you really don't want me babbling on about that:).

So this past week we made a pilgrimage to Pittsburgh.  When you have children with multiple special needs sometimes no matter how much you wish, you can't meet all of their needs in one location.  Cary Lynn has many needs, but I often find myself struggling to get her the care she needs where she lives.  Especially, her CVI.

Since we brought her home I heard so many things about CVI and one thing would often contradict the other thing.  I found myself confused, aggravated, and just at a profound loss as to what needed to happen.  Tracking or no tracking?  Color or black and white?  Light or dark?  The list went on and on and on.

I also found a lack of opthamologists that understood any of it.  They wanted to wait and see. Something my daughter couldn't afford to do.

Then I wondered why I was going to all this trouble.  Why not go to the person who did all the original work.  Dr. Roman.  So I called a few months back and got the very last appointment of the year.  It was my Christmas miracle.

The days flew by and we got ready to roll.  We went a few days early and we saw some of Pittsburgh.  I think our favorite spot was the aviary.  As a side note, I am allergic to feathers, but my children love birds.  So what's a mom to do.  Basically I sucked it up, took some allergy meds and fed the Lorikeets with my little one.

Cary Lynn loved them.  One landed on my arm and nibbled on her ear and she just laughed.  It was nice to do normal things.  Plus the staff was very accommodating.  I sneezed like crazy all night but it was worth it to make her happy like that.

The next day we went to West Penn Hospital and our first visit with the View Program.  Dr. Roman came out to greet us herself.  A side note on this.  I have read all her books, articles, and watched her.  She is like the Cher of the CVI world.  I was so worried I would make an absolute fool of myself and say something dumb.  But she put me right at ease.

For the next 2 and 1/2 hours (yes she took that much time for us!) she went over everything and I got lots of answers.  And practical ways to incorporate vision into everyday life.  Plus I have her phone number and e-mail address so I can contact her.  She also is willing to talk to Cary's doctors and therapists.  Wow.  So here is mostly what we came away with.

-There are three phases of CVI.  One is the most basic and three is the most high functioning. Cary Lynn is a phase one with her foot in the door of a phase two.  That means she is moving from being a passive gazer into a more proactive vision realm where she can learn to interact with her world making eyes and hands work together.

-Cary Lynn would rather everyone else do the work for her and she can just sit on her tookas.  I was already aware of that and Dr. Roman picked that up in about 15 minutes of meeting her.  She needs to be firmly pushed in the right direction.  But that tends to be the way she is with all things that involve work:).  So I was given tips on how to push her.

-What does she see?  OK here it goes.  Follow me on this.  Imagine you are in an airplane.  You are 3,000 feet in the air and we are talking about the Mayans.  You have a window seat and glance out of the plane all the while discussing Mayans.  How much do you see?  You know things are there, but it is hard to see what they are at 3,000 feet in the air.  Plus you are distracted by Mayan culture and my amazing amounts of knowledge on it.  That is what Cary Lynn sees.  She is in an airplane and distracted by sounds and activity around her.  That is what most CVI kids see.  They DO see, but it is hard for them to place the pieces of it all together.

So how do we make Cary see things better.  Well we are back in the airplane again.  I have fallen asleep and while we were talking the Chipmunk apocalypse that the Mayans had foretold has happened. (You should have payed attention when I was telling you about this). We are flying over Vegas at 3,000 feet and all there is left is Caesar's Palace.  There are three giant spotlights highlighting it.  I bet you can figure out what it is.

So it is a pretty simple solution.  Isolate and highlight what we want Cary Lynn to see.  We have been doing that already, but with Dr. Roman's guidance and helpful tips I feel like I can do it better.

-Also we need to push to make vision a priority at ALL of her therapies.  Making she she is in the best positions and placements are a must.  The more we use her eyes the better she learns to interpret the world around her.

-She also needs glasses.  It won't fix CVI, but she is nearsighted and that will help her.

The trip was amazing.  Meeting Dr. Roman was the best.  But learning that my child CAN and DOES see was priceless.  Looking ahead I have all sorts of hopes and dreams for my daughter. And a feeling of great optimism that we can accomplish so much.  It will be an uphill battle most of the time.  My little girl is not easily persuaded that work is fun.  She has her own opinions about that.  But with all the people fighting for us and supporting us we will make it. One step at a time.