Unfortunately we couldn't get a direct flight and the best flights were out of Reagan National so it was a long day with a connection through New Jersey. Breakfast in Arlington, lunch in Newark New Jersey and dinner in Akron Ohio. We almost missed our connection so we didn't have time to visit with pilot after the first flight. So when we arrived in Akron the pilot was super nice to move and let Cole take over the cock pit. He thought it was Christmas! Then he got to get off the plane on the tarmac given the airport is super small (the only food after security is an Arby's).
The taxi ride in the Dodge Caravan to the Ronald McDonald House was equally as exciting for Cole and he sat in the "way back" which was novel for him. Then when we arrived at the house he was repeating ongoing "remember when" stories about the security car that took us back after surgery and throwing up outside the house. Not my favorite memories, but funny none the less. We settled into our room and decided to hang out down in the family room of the house.
It was perfect timing to be downstairs because they let Cole feed the fish! Although we have a fish at home, he thought it was pretty cool that when you held the can by the tank all the fish swam over. And not only that, he has to get his fingers wet, then touch the fish flakes and then put them back in the tank to get the fish food to float into the water. It was a fun experience for him since our tank at home is much smaller and has only one fish.
Cole also wanted to give the gift cards he collected for the house. As you may remember, Cole chose to collect gift cards from his friends instead of toys for his 6th birthday. He collected $250 dollars in gift cards and the Ronald McDonald House was so excited to receive them! We talked about how important it is for the house to be able to buy soap, laundry detergent and food to stock the kitchen. We talked about how some families need to stay at the house for a very long time.
As we were playing in the family room a little boy came over to Cole and I told Cole to introduce himself. He and Westin were immediately best friends. They played together for a little while and then Cole asked if we could eat with him and his dad. Cole thought it was pretty cool he got to have a play date over dinner. And the best part is that Cole never asked why Westin's head was completed shaved. He didn't ask about that scar he had just like Reagan's from forehead to behind the ear or the large abrasion on his forehead. And he never asked why he was wearing a cervical collar and wasn't allowed to run or jump. And that is what I love about kids. They don't always find the differences in people first - they find the things they love and embrace those. We have so many lessons we could learn from our kids.
It was heartbreaking to hear over dinner about the terrible car accident Westin was in with his mother just 8 weeks before. He had severe head trauma and was inpatient at Akron Children's for 7 weeks and now at RMH while he receives therapy. Unfortunately his mother did not survive the accident and dad has gone from working dad to the single care giver as they figure out the lasting affects of the injuries and how to move forward without his wife. I would love all who read this blog to lift them in prayer as they learn to live their new normal.
After playing for a little while after dinner we retired to our room to try to get a good night sleep before testing on Tuesday.
As usual, Cole was up bright and early Tuesday morning and ready to go down to play with Westin. We got showered, dressed, cleaned our room, stripped our sheets and packed our bags before heading down to the kitchen before breakfast. We needed to be at the hospital by 8am so we were the only ones down in the kitchen. Cole was rather disappointed he didn't get to see Westin in the morning.
We walked over to the hospital and were even a little early. We checked in for our appointment and were caught off guard that they didn't seem to remember that we had both ophthalmology AND optometry appointments scheduled. They told us to see Dr. Hertle first so we headed back, they ran through the traditional vision exam and Dr. Hertle said he looked good. He said we should come back in 3 months for the testing once Cole has adjusted to the contacts (that we would be getting in the next appointment). Rather caught off guard since he told us to come back in December to repeat the testing, I reminded him that we flew here for the appointment and I thought we were doing testing and that's why he wanted to see us back. He said the testing will tell us more once he has the contacts but if it's easier we could schedule the appointment for over the summer. Still rather caught off guard I said ok and the optometrist came in to fit the contacts. Well apparently they were already ordered and she had them in! Although we were told he needed to be measured for them and that's why we were there, I was excited we were going to walk out with them today! As a reminder, we are trying the contacts because the doctor said research shows they may quiet the nystagmus by telling the brain something is new and different. Also, by having the lens connected to the eye the light doesn't have to refract twice and therefore is more effective.
Unfortunately after an hour of coaxing and eventually threats, Cole still refused to put in the contacts. At this point I'm thinking this trip was a complete waste of time and money and I think they could sense my frustration. I had them speak with Dr. Hertle and we decided to do the repeat testing today. Unfortunately the testing was rather difficult for Cole and he really struggled to look exactly where they needed him to. He repeated the eye movement exam where he had to watch images flashing onto the screen. Then he had to repeat the test where he indicated which dots had lines and which were solid. The last test he did required him to look into a small black circle and look at a red line. Unfortunately he really struggled to look in the small hole and keep his nystagmus calm so the camera could catch the view it needed. But in the end we got the testing done that we needed. Dr. Hertle said he would send us the results of the testing that will hopefully outline the improvements we gained with the surgery. But just watching him do the eye exam he said he is doing better. That was very encouraging.
We headed back in to see the optometrist and I was hopeful after some time to calm down and talking he would put in the contacts but he wouldn't. So we ended up leaving on the condition that he will put them in with Dr Mojallal next week when we have the appointment to test the NuEyes. I'm thinking we may need to bring Johnny to that appointment! He is much better at being matter-of-fact and not caving to the soft side like I do.
So off to the airport we went to sit there for 4 hours and wait for our flight. Unfortunately I tried to catch an early flight, but nothing was available. And not only that, it appears as though our flight is already delayed so we will miss our connection. Luckily there is really good WiFi and a playground. Hopefully we'll get in sometime tonight. Ok, back to the playground....
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