Thursday, January 19, 2017

Nystagmus Surgery Results and HABIT Camp in NYC

It's a new year and with it will be GOOD THINGS!  I"m looking forward to seeing what this year has in store for the Bischoff's.  I plan to continue to streamline our doctor's appointments and reduce where possible.  We've decided not to go back to the physiatrist at this point and have discontinued the night brace.  So far we haven't seen an increase in falls or tension so that's a good sign.

We did go back to OH in December to visit Dr. Hertle and have repeat testing done for Cole's eyes.  I received the report of findings and the statistical results look amazing!  I have included two diagrams - the one in white shows the Electronic Eye Movement Recording (EMR) from before the surgery.  This shows how much his eyes are moving at any given moment.  The image in black is the EMR after surgery.  Although I don't have a baseline, it's amazing how much these results have improved.  Obviously we can see that difference without data, but it's always nice to have quantifiable
information to support suspicion.

Additionally, his eye exam indicates he went from 20/500 in the right to 20/250 and from 20/300 in the left to 20/200 and from 20/300 in both to 20/125 in both!  Someone is considered legally blind at 20/200.  The only challenge for Cole is that his lenses don't correct this vision.  So whereas some people with 20/125 they are corrected much closer to 20/20 with lenses.  That isn't the case for Cole.  Regardless, we are SO happy to see the surgery was a success!


In other news, I recently submitted an application to have Reagan participate in a bimanual therapy camp at Columbia University this summer.  They are only running the research for two more years and there aren't many programs like this.  It was SO nice to not have 4 weeks of intense therapy last summer so the kids could enjoy some camps, but we have to research this options.  It's called HABIT - Hand-Arm Bimanual Intensive Therapy.  I'm very apprehensive about living in NYC for four weeks, but I really think this could be a good program for Reagan.  We will see if our application is accepted. I love the city, but I can only imagine how expensive it will be and how hard it will be to keep Cole entertained.  Unfortunately, upon cursory investigation, the Ronald McDonald House in NYC is strictly for cancer patients.  I will have to do a little research on an airBNB or something like that if we are accepted.

Anyway, just a quick update this time, but no news is good news right?!


No comments:

Post a Comment