Turkey Day and 2020 Plans

Turkey Day 2019

Wow, I am so sorry we haven’t posted in a while! Things have been crazy with the holidays, but crazy in a great way. We hosted Thanksgiving which included my mom’s side of the family, part of my dad’s side and my in-laws. It was a great night with lots of great food, laughs and love! We found out that Jackson could care less about Turkey or Mashed Potatoes, but he LOVES stuffing!! He was so happy that we had leftovers the next day as well.

As we welcomed a lot of people into our home, all people that Jackson has meet and knows, his anxiety did escalate, which for him and Fragile X is pretty typical. He did warm up eventually and had a great time with his family. One day I hope that he outgrows the anxiety, but if not, I just hope that others understand and respect his space. For a child that doesn’t speak yet, I cannot imagine everything going through his mind and all his emotions he is feeling.

One thing everyone should be aware of is just respect people’s space…even the people you know and see regularly. Not everyone wants someone up in their face each time they meet…not even a typically developing individual.

Upcoming 2020 Plans

So, I have held off on posting this as we had a few more things to figure out, but I can’t wait to share this news. In January, we will be making a trip to Cincinatti Children’s Hospital to meet some of the best doctors in the field regarding Infant/Toddler Fragile X. I actually saw a video on Facebook from the FRAXA Foundation with one of the doctors talking about research and the future of medicine for Fragile X and decided to look into that dr. Upon that research, I found the Children’s Hospital and how they actually had a center someone Jackson’s age. This is huge as we don’t have a center like this here and in numerous conversations they actually have people come from the UK and all over the US to see them, so you can see the need clearly exists, but resources just don’t seem to be there.

I contacted them and since that day, my husband and I have had 3 conference calls with these doctors and exchanged tons of emails with their office about what they can offer us and Jackson. There will be some tests and then clinical appointments to get us even more info about Jackson’s case and some direction on treatment options for behavioral issues he presents today, such as head banging, which is so hard to deal with.

As we are planning this trip, bear with us, but we will definitely keep you posted on this upcoming adventure. Fingers crossed that we get more answers to help our sweet boy.

Stay tuned!