Wednesday, November 12, 2014

Christmas on the road

Well I just found out today that Sam and Sarah will be seeing their doctor in NY the week of Christmas.  To be honest, we should have scheduled Sam before now but everytime I went to plan it, something would come up.  It's been over a year since he has seen Dr A. 

Going back to NY is very hard for me emotionally.  We've been going to Rochester NY for Sam, at least yearly since he was three years old in 2007 when he had the corneal implants.  At that time we stayed for three weeks, as the surgeries had to be spaced out.  Of course we always stay at the World's Best Ronald McDonald House:)  I've always associated Rochester with the very best of memories.  How many people can say they've seen their almost completely blind son regain sight?   (here is a story- used to have a video there but it seems to be gone
 We became friends over the years with the Eye hospital staff and the dear staff at the RMH. Also we have two sets of college friends who live in the Rochester area so we felt very close to the folks up there.  But then in August 2012, when the accident memories of Rochester are now forever linked with tragedy.  I still love all the folks and during the five months Selah was in the hospital, we became even closer to everyone but there are now so many emotions connected with Rochester for me. 

So some of the dearest memories  mixed with some of the saddest memories make up Rochester NY now to me.  It's such an odd place to be in emotionally.

So the kids have appointments on Monday, December 22 in the office.  Sam has an EUA (exam under anesthesia) on the 23rd and usually a follow up appointment the next day on the 24th.   I want Sarah to be seen by Dr A just to check her eye.  Unfortunately we know we can't do anything medically for her but I just want to make sure things are stable.  Sarah at times, pokes her eye and it gets so red.  Blind kids do that to stimulate the eye to give them the funny little squiggly things we see when our eyes are closed. 

Blindness is in degrees. None of my kids are what is called "black blind" where they only see darkness. Shad is black blind in his bad eye but 20/20 in his good eye.  (his blindness is due to some sort of accident after he was born non repairable)  Sam is black blind in his left eye but sees in his right eye to some degree.  Since he is non verbal, it's really hard to tell what he sees, we just have to observe his behavior to figure out how far away he can see.  Sarah was only born with one poorly developed eye, she sees light for sure and seems to always be able to find me!   But her vision is very limited and probably as she ages, she will go black blind.  Selah had some sort of issue before the accident.  We were told by Ukraine that she was blind.  Well she wasn't blind, but there were some problems with her eyes maybe something called "cortical blindness" where the eye is formed normally but it is unable to  transmit the images to the brain, due to brain damage.  We think now she certainly has some cortical blindness after the accident, so it maybe worse than it was before. 

Steve is the strange on in our family he has 20/15 vision in both eyes, our doctor was quite amazed when he tested Steve. 

Sorry about the blindness lecture.....LOL  People know Sam and Sarah are blind and they are often shocked when one of the kids grab something and then I have to explain to them the degrees of blindness.....

So....we plan to be on the road home on Christmas Eve.  I can truly say we have never done anything like this but it's ok.  We'll all be together and Selah with be with her nurses who love & care for her.  I'm a bit freaked by the timing but just last night I woke up around 3 am to go to the bathroom (TMI) and I laid there worrying about their doctor's appointment.  I thought it would be scheduled earlier in the month and was stressing about leaving Shad and Steve here to go to school.  It's not that I don't trust Steve, I do 110% but I hated the thought of them having the older van to drive (our newer one has all the safety gadgets) and I knew it would be a bit hard for Steve to get Shad to school and himself to college on time every day.  Then I thought about flying but A.  I HATE to fly B it would be hard for me to take both kids by myself and if Jon came to, that would be so expensive.   So I really just prayed and asked God to work it out along with my extra anxiety about going, not to mention the finances.  Then I got the email this morning and realized it solves our problem about leaving the boys, we can take them now.  Of course there are some other problems it creates but I think all of them are workable. 

Well that's our big news for today!  Just taking it all in.  I try my best to think of life as an adventure and a journey, so that's how I'm looking at this.  At least I don't have to do a Christmas Tree!!!   Holidays seem to overwhelm me now.


  1. Our son has CVI and I had never heard of it until another mom of a CP kid described her son's condition. His one eye had stopped registering vision because of uncorrected crossed-eyes for so many years. We thought he'd be permanently blind but he has had years of OT therapy at school that focused on visual rehab. Our ophthalmologist really debunked her methods but after 5 years our son no longer needs very large print to read and doesn't need items highlighted in yellow either to differentiate them from the white page. I think the visual impairment was what I grieved most of his debility from his time in the orphanage.
    NY will be a beautiful place in December and hopefully everyone will be brimming with holiday cheer. Safe travels and praying for cooperating weather!

    1. What exactly did your OT do in vision rehab? We have a vision therapist and a brain trauma therapist that work with Selah with light up toys and various other things. since we think Selah had some cortical blindness BEFORE the accident, we know she must have some now. Any suggestions you have I can give to the therapists.