Well we have been back from Akron for a week and I am just now getting around to blogging about it. My work schedule has been a bit off and I am still having a standoff with Comcast, so no internet at home.
Anyhoo... Our trip was a success in our minds. The travel went amazingly well with a toddler. I was prepared for much worse. We made sure we had something for Colt to drink during take-off and landing and it didn't seem to bother his ears. We brought our little DVD player with Bee Movie and he watched it without making a peep during the first flight. We landed in Charlotte and had a 2 1/2 hour layover. We decided to have lunch at the Chili's inside the airport and while we were eating, Colt kept laying his head on the table and falling asleep. Poor kid was exhausted. Long story short, he didn't get any sleep in the airport, there was way too much going on. We got on our second flight from Charlotte to Canton-Akron and Colt was passed out before the plane left the ground. He slept until it landed in Canton. I couldn't have been more relieved. We get off the plane and went to pick up our rental car. Now, let me set this up. Ryan and I do not have a credit card. I think they are nothing but trouble, UNLESS you are trying to rent a car. My dad and Judy let us borrow their card to rent the car with, so we were good with that. We had reserved a car with Enterprise, along with a carseat. When we got to the counter, they had reserved us a FLIPPIN' FIAT! For 3 adults and a carseat! REALLY? Obviously, we were going to have to upgrade if we wanted something bigger, and when we went to pay, he wouldn't take the card because it wasn't mine. So as we're standing there trying to figure out what to do, the guy says in the most cocky voice I have ever heard "well there are plenty of taxis out front." Taxis don't come with carseats, jerk. I was in tears. ANYWAY, we found the Avis counter and we worked out a deal with them where they would use our debit card and just put a $200 hold on it until we returned the car. They let us pay with my dad's card, so it can be done. Grr. The lady at the Avis counter was super nice, so we'll definitely use them if we ever have to rent a car again.
So we finally get the car and make our way to our hotel, a really nice Fairfield Inn that a friend got us booked with. As soon as I walked up to the counter, the manager came out and said the only room left was supposed to be ours but it was "unrentable." Hm. So, he said "We've booked you a room at a place down the road and it's on us. Your stay will be free." Sigh. Okay, so we get all of our stuff and Colt back into the car to go find the Ramada Inn down the road. Not going to lie, it was a really skeezy, dirty place. I've stayed in Ramadas before and this one was not like the others. I kept saying to myself "There is a reason we are here. God has us here for a reason." When we checked out Thursday morning, I still don't know what that reason was. But hey, it was free.
Wednesday morning, we got up at 5:45 for all 4 of us to get ready and find our way to the Children's Hospital. We got in immediately and they took us to meet Dr. Hertle. I loved him instantly. He was great with Colt and kept his attention without making him cry, which is the problem we usually have. You have to bear-hug him to keep him still while making him keep his eyes open, which totally freaks him out. We didn't have that problem at Dr. Hertle's office, he was great! After our initial meeting, we were taken to a room for an Eye Movement Recording Test. The doctor performing the test was the cutest little Asian man I have ever seen. I held Colt while he was to watch some images on a screen, while there was a camera in his face recording his eyes. This test could take up to an hour, but only took about 20 minutes because he cooperated so well! Then he reached for Dr. Yang and Dr. Yang took him and said "Oh. He's heavy!" Colt was as big as the doctor! It was so funny, but they just took to each other. He held Colt for about 5 minutes. Adorable.
Next came another test that I can't remember the name of, but they taped electrodes to Colt's forehead and then glued them in his hair. Let me tell you, that caused the fight to come out in Colt. It was ugly from the start. He pitched the biggest fit about those electrodes and wires coming from his head that I didn't think it was going to work at all. She let us take a break and get him calmed down. The only thing that worked was his daddy's iPhone. Figures. That Disney Junior app saved us! We finally got him calmed down enough to begin the test. The lady said it can sometimes take all day to do. You've gotta be kidding me! Anyway, it did take a while because a red dot on a computer screen is not nearly entertaining enough for a toddler, let me tell you. I am certain that pitching that fit wore him out, because after that he cooperated like a champ until she said we could quit.
The next test was easy. It was to test the acuity (or sharpness) of his vision. They held up big cards with lines on one end to see how quickly he found the lines. He did well with that test. After that test, they dilated his eyes and we waited to see Dr. Hertle again. He then told us what kind of Nystagmus Colt has, what he thinks our doctor should do for our next surgery and that there is something our doctor said that he agrees with.
First of all, Colt has what is called Fusion Maldevelopment Nystagmus Syndrome. The previous name was Latent Nystagmus, which is much easier to remember. ;) Basically it means that his Nystagmus will go away when we get his strabismus fixed. It is already much better than it was before his first surgery, so it's good to know it will go away completely, when we get the other problem fixed. Now, Dr. Hertle had a suggestion for Dr. Peterson in how he would do the surgery. It will be much more invasive than the last two, but whether Dr. Peterson will want to do it that way or not, we will find out this coming Monday. I am anxious to see and have a date for our third surgery.
Now. Dr. Hertle agrees with Dr. Peterson that Colt has some kind of underlying neurological problem. They believe this is why his eyes are not responding to the surgeries the way others do. They think this could also explain why he isn't talking yet and why he is slightly motor delayed. Luckily, Colt's understanding is there, he's obviously very smart, so it isn't a problem that will hold him back forever, it's just hindering him now a bit. It was suggested we see a neurologist and pediatric neurology development specialist soon. On our way home on Thursday, we called our pediatrician to leave a message about that. He called us back that evening once we got home and talked to us for about 20 minutes. He said he'd make our appointments for us at both places, but it would be months probably, due to the high demand of those specialties. If anyone in the Chattanooga area is in need of a good pediatrician, Dr. Josh Smith is amazing. AMAZING. He has helped us get things done in a week's time, when others told us it would take months. He even called us on his off-day last year to tell us the results of Colt's MRI so we wouldn't worry all weekend.
So. There we are. Happy our doctor is doing everything the way the best doctor in the country would, happy that we know the type of Colt's nystagmus, happy that we have hope it will go away, but anxious to see what the neurologists say, and anxious to see how many more surgeries Colt will have.
If you made it all the way through, CONGRATULATIONS! ;) Thank you to everyone for the prayers and well wishes during our trip. We are truly blessed to know such helpful, wonderful, supportive people. I'm including some pictures from our trip below. :)
Colt and Daddy checking out the planes
Only my kid eats berries at the ice cream place. He won't eat ice cream!
Rock and Roll Hall of Fame
Passed out on the plane
I can do it myself, Mom!
Playing at the Children's Museum after the doctor
Whoa, my eyes are still dilated!
Bee Movie on the plane. :)
Waiting on our plane
Lake Erie in Cleveland
Ready to go home!