We made it to NYC!

We made it to NYC. It’s been a really long day. Henley had a headache before the plane even took off and so I was worried about how this day was going to go. I used these special ear pressure regulator things to help with that. She seemed to do okay until we landed and got on the ground. Thanks to Just for J, this trip got a major "fun upgrade". Our family was picked as their Holiday Honorary Family and they called us about 2 weeks ago to tell us that they wanted to pay for our hotel and something fun to do as a family while we were in NYC. Our first surprise was that they arranged for us to be picked up from the airport in a sweet limo! The kids thought this was just the coolest thing ever. Our driver was amazing and took on the role as tour guide and drove us through the city down 5th Avenue, Past Rockefeller Center and through Times Square on our way to our hotel. He even acted as a photographer for us once we arrived. We got checked into our room and then went to find dinner and take a very quick walk through Times Square. Here are some of the pictures from tonight but I am adding a couple different pictures just to give you the very real perspective of what it looks like to have Chiari & Ehlers Danlos Syndrome. These are the types of changes we see on a very regular basis. It's sad and hard because there is so very little we can do to impact how she feels. Henley can literally be smiling one minute and miserable the next. She is naturally very happy and generally smiling from ear to ear around people. However, once she is back at home or away from others she will just crash. Because of her extremely low muscle tone, she gets VERY tired VERY quickly after doing what normal children would not even think twice about. Couple this with a Chiari headache that is not easy to manage anyways and you have a mess. So this was Henley after walking ONE BLOCK from our hotel to a restaurant.

Tomorrow is the big day. We are excited and anxious to meet this Doctor. We have had to assure Henley that nothing is going to happen to her tomorrow and that Dr G is what we call in our house "A talking Dr." (since neurosurgeons pretty much only talk to you unless they are in the Operating Room and the kids rarely seem to associate the two since they are not awake when they are operating) We have always been very honest with Henley even when she was 2 years old and make sure that we try to tell her everything that is going on in terminology that she understands. We feel like this is really important and we want her to know that we are going to walk her through every step of this journey and that nothing is going to come as a surprise or catch her off guard. We feel like this will hopefully set her up later in life to not be afraid, but rather to be informed about things to expect and hopefully feel empowered rather than helpless like children can often feel. We have spent the last several weeks explaining that although surgery is likely down the road, it's not happening tomorrow. I will let you know how it goes tomorrow.