A little piece of heaven

I guess the best words to describe our trip are GRATITUDE and HOPE.

Gratitude to have the opportunity to share our lives with the most amazing little person in the world. He was such a joy to be with, every minute of every day for 2 weeks. We couldn’t help but to be happy – his joy is infectious. Gratitude to the wonderful people that hosted us in their homes, drove to meet us in different cities, met with us at crazy times of the night and day in all these different places. We feel so blessed to have such wonderful friends in so many places. We feel grateful to have meet such intelligent, compassionate people willing to give us support and advice in our journey towards giving our son as many opportunities as possible.

We’ve returned with a sense of overflowing hope. We feel that we are gathering more and more tools in our quest to help Nathan gain as many functional skills as possible.

After New York, we went to North Carolina and spent time with our friends the Benners.

We also went to see the Arnold’s and spent some time with them remembering Cayden. They are such a lovely family and we were just so sorry to have met them under such circumstances.

After North Carolina we went to Dallas. We met with our wonderful friends Amber, Brandon, and the rest of the Pollard gang. It was so great to meet them and to share a couple of days and a lot of experiences. We had lots of fun.

We also met up with Tracie’s family, another child that has holoprosencephaly. We really loved meeting with their family and being inspired by them.

We also met briefly with our good friend Heather

After Dallas, we went to Austin just for a day. Sorry, no photos of Austin.

Finally, we went to Portland for our appointment at the Reach Institute. I will make a whole post about that as there is so much to say.

It was a lovely vacation and we had a great time!

We have a ton of photos up, please view them on the PHOTOS page!

We made it to New York in excellent shape. Nathan slept through the entire plane ride and woke up when we landed. He was ready to go when we landed so it was perfect that we had to take the train and walk around New York City. We had a wonderful weekend walking around the city, we didnt’ go anywhere in particular, just walked and walked and allowed Nathan to look at everything. He had a blast. I call him my “Endless Enjoyment”, as he is so much fun to be with. He’s just always delighting about anything and everything and will throw his head back and laugh out loud at the most random things, which make Owen and I crack up too. We’ve been really really enjoying ourselves.

Today was Nate’s first day of his neurocognitive assesment. It went really well. They did several tests. First they had him look at objects and determined how he reacted for them. They tested him for object permanence, to see if he could follow hidden objects, word and object recognition, and other things. They used eye gaze to determine if he understand what he was being asked. He did really well.

After that, he was in a room and they had auditory and visual stimuli coming at him from two sides. They then measured his response to that with a computer device.

Next, they did an EEG. They are going to use the data from the EEG to determine how quickly he responded to auditori stimuli, and they are going to use the data to try and impose the reactions on his MRI, so we will know exactly what part of his brain is lighting up for different types of stimuli.

It was a really full day but he performed like a champ. He attended to everything and was very good at focusing his attention.

We also talked a little bit with the people from the study and learned some interesting things. They talked to us about early brain development and plasticity, and encouraged us to stimulate him as much as possible in these early years, as it’s the best time to expose him to as much as possible. They said that the more we stimulate and expose him to different things, the more the brain will adapt and other parts of the brain may be able to compensate for the malformed areas. Dr. Benash was very impressed with his attention, and said that it’s a great opportunity for us to stimulate him as much as possible, if he can focus for extended periods of time, we can stimulate him and he will pay attention, so he will have the opportunity to learn many new things. She encouraged us to make sure he gets floor time, as he’s not getting much floor time and she said it’s essential for his development.

We are really happy that we had the opportunity to come.

Tommorrow they will do more testing, and I will post about that.

In the meantime, there are a ton of pictures here:

Here

We were devastated with the news that Cayden, a beautiful child that had Holoprosencephaly, died this weekend. When his parents went to his room in the morning, he had passed away in his sleep.

We are so very sad for the family. We were going to meet Cayden this week in North Carolina. Instead we are going to his funeral.

Please can you pray for Cayden’s family, I can’t even imagine how hard this must be for them.

Thank you.