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?!

New Year's Eve in Hershey and That's a Wrap for 2016!

After a fun filled Christmas but almost a full week of work for Johnny we decided to head to Hershey to celebrate New Year's Eve.  We headed out late morning and decided to stop at the Bass Pro Shop on the way there. We don't ever really NEED anything, but it's always fun to look at the taxidermy animals and huge fish tank.  After dreaming about boats and looking around for a while we headed the rest of the way to the hotel.  Unfortunately our room wasn't ready so we killed some time at the outlets and then went to check-in.  We haven't stayed at the Hotel Hershey since the kids were born, but it did not disappoint! It was built in 1933 and has been expanded and renovated several times over the years.  We had about an hour to relax before we headed to Giant Center for a Hershey Bears Hockey game.  It's tradition for us to go up for a game, but we usually go earlier in December.  Given Johnny's school schedule we waited since he didn't have classes on New Year's Eve.  We had a great time at the game despite a loss and even ran into some friends who live right up the street from us!

After the game we decided to head to the Downtown Hershey block party.  They had a band playing and they raise a huge Hershey kiss at midnight followed by fireworks.  They had many different food vendors and the Hershey Kiss Car.  And of course, the characters from Hershey Park were there including the Hershey bar and the Kitkat.  We also found a beautiful Methodist church that was serving hot cocoa and cookies in their basement.  Although it wasn't terribly cold, the kids were a little chilly, and there wasn't quite enough to do to entertain the kids for the three hours we had until midnight so we decided to head back to the hotel for the dance party.

We got there about 9:30pm and the kids were already starting to seem tired.  But the minute we walked into the room they both perked up and had such a fun time.  Cole was a dancing machine!  HE had so much fun with the loud music, light up dance floor and dancing with the Hershey bar and Kitkat.  Reagan danced too, but she also had fun with all the light up wands, balloons and necklaces.  They both lasted much longer than expected, but we decided to head up to our room about 11pm.

Since we made it so close to midnight we decided to order pizza and popcorn to the room and watch the ball drop.  The kids had a sword fight with their light up swords from downtown.  They've never stayed up that late before and thought it was really fun.  Cole fell asleep just before the ball drop but Reagan stayed awake!  We then watched some of the downtown fireworks from our window before falling asleep.

Surprisingly the kids were wide awake by 8am and begging to go to the pool.  So we headed down for a quick swim before breakfast.  The hotel had robes in the rooms and the pool area was very warm so it was a nice morning.  Then we all took showers, packed up and headed to The Circular for breakfast.  I had been thinking about this breakfast for days!  Unfortunately because it was New Years Day (and more than usual attendance) they didn't have their usual omelet and Belgian waffle stations.  Although I was disappointed, the buffet did not disappoint!  It's such a beautiful room with stained glass windows and beautiful views out to the terrace.

It was an amazing and fun filled 24 hours that unfortunately had to come to an end. But we had a great time and will definitely be back!  It was a great way to wrap up 2016.  It was a year with no hospitalizations so we have a lot to celebrate!  I also made a concerted effort to reduce the amount of time we spent in doctor's offices.  So we stopped seeing a few of the specialists and spaced out some of the others.  Although we had to add a few new ones, overall it felt like we had less appointments.  Last year we had 32 appointments and 101 therapy appointments. This year we had 25 doctor appointments, one surgery and about 70 therapy appointments (decreased from last year because we didn't have constraint camp and Reagan didn't get off the wait list for therapy until halfway through the year).  Overall I call this year a success!!  Bring on 2017!