Tuesday, September 20, 2016

Nystagmus Surgery Trip Day 1 ~ Ronald McDonald House


After we put Reagan on the bus we finished up packing, did a little work and left VA by about 9:30am.  We decided to stop for breakfast at Bob Evans and then had a quick lunch on the way to Akron, OH at the Somerset stop on the Pennsylvania Turnpike.

It was a smooth drive and Cole stayed occupied with movies and games on his iPad.  We drove straight to the Ronald McDonald House to check in and get a tour of the house.  This house is VERY different from the one in Baltimore.  Although just like Baltimore, they are building a brand new facility directly behind the existing house.  So far everyone is super nice.  It's a much quieter house and not as many people, although it is fully booked this week.  The biggest benefit is that we can walk across the street to the hospital.  In 2014 this house served 12,872 individuals with 135 core volunteers each month.  They had 55 families who stayed over a month.  The families coming to this house were from 46 counties across Ohio, 23 different states and 8 countries.  So if you visit McDonald's this week please think about all these families who benefit from your support and put your extra change in the donation box.

After we got settled into our room and got a tour of the house we drove the car to the parking garage down the street and decided to walk into town for dinner.  As with many cities, there are areas with more activity and areas with less.  We found a few hip bars, but the dinner options were rather limited.  We were able to find a nice Irish restaurant, though, and had dinner.  On our walk back we decided to venture down by the lock system.  Although the Ohio & Erie Canal in Akron was abandoned in 1913 due to the increased popularity of the rail system, it still had much of its original facade in place.  The history said there were families living and working on these boats for 7 months of the year.  We talked about locking system, how it works, looked at the water fall and of course Cole had to throw some rocks in the water.

Then it was off to bed early for Cole so he's ready for tomorrow.  Unfortunately he has been up since about 3:50am when Reagan woke them both up, had them dressed, teeth brushed and beds made.  I woke to hearing their laughter and asked what was going on and Reagan said she was ready to go to Nana and Pop's house for her sleep over.  We asked them to go back to bed and I fell asleep only to wake to find them standing next to me at 5:30am asking if it was time yet.  Clearly they were excited (or nervous) about the adventure.

We are all looking forward to meeting Dr. Hertle tomorrow and learning more about what to expect on Thursday.  We asked Cole if he had any questions and he said he wanted to ask if there was a way to make the tools not hurt him.  Good question!  We told him yes but that we will be sure to cover that tomorrow.  We are hopeful that his cough doesn't preclude him from having surgery.  I brought him to the pediatrician Thursday and spoke with the surgical team at Akron Friday and everyone thought he would be fine.  I am still worried given we've had MRI's cancelled for Reagan due to a stuffy nose.  Any time someone has to be anesthetized there is a concern about the airway.  Luckily his throat is open and his lungs are clear.  The surgical team said as long as he doesn't have a fever we should be ok.  Praying they are right - we will find out tomorrow!



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