Cincinnati Update

Day 1

Hey all, sorry it has taken so long to post updates. Upon leaving Ohio, Dan ended up sick, I have been recouping from an illness over the past month and Jackson has an ear infection…craziness!

Anyway, let me get to it! Jackson participated in 2 development assessments and 1 play based assessment on Monday. These assessments were the same as the ones he initially completed in July. He did great with shape sorting, social skills are off the chart, wonderful at identifying body parts on a doll and himself, etc.

Then, we headed back to the hotel for nap time, however, Jackson decided he didn’t want to nap. So, after a 2 hour break and a trip to Kohl’s in Kentucky to buy a Musical Giraffe to help Jackson sleep at night, we headed back to the hospital for the next set of tests. As you can imagine, he was not very happy to have people in his face trying to get him to participate in a NIRS test (wearing an itchy cap with electrodes on it), but we were able to get him to sit still long enough to get 10 minutes worth of data. Next, we participated in an EEG study. This time Jackson actually sat still the entire test thanks to being able to splash around in a bucket of water.

The last part of the day was really hard. Jackson had a blood draw that took 4 people to wrap him in a blanket and hold him down while I stood in the corner and blew bubbles to keep him distracted…didn’t work! After all that fun stuff, we packed up and headed back to the hotel to order dinner and get some much needed sleep.

Day 2

This day was a lot more low key, which was definitely welcomed. We first met with the Clinical Psychologist, Division of Developmental and Behavioral Pediatrics. She was incredible. She gave us a lot of tips regarding speech therapy and also helped us understand some behavioral issues we experience with Jackson daily, such as headbanging when we tell him no or take away something he can’t have. It will take some getting used to in changing how we communicate “no” to him and phrase things differently, but who doesn’t love a good challenge?

Next, we met with the Assistant Professor, UC Department of Psychiatry and Behavioral Neuroscience; Psychiatrist, Division of Child and Adolescent Psychiatry. She was also amazing! We learned that they are successfully treating mice with Fragile X, which is very positive news. She called Jackson “gifted” multiple times, because of how well he was doing with everything. She reassured us we were doing great with him and all his early intervention therapy, redirecting him when he is frustrated and really made me feel like everything we have been doing to help him excel has been worth it…no matter how tired we are, no matter how many hours in a day are spent thinking about what else we can do to help him, no matter how many minutes we spend making dr’s appointments, meeting with new therapists or having conference calls with medical professionals…Jackson is absolutely WORTH IT!

Results

Most of the tests/research were really for furthering ongoing research/studies that the Children’s Hospital is conducting, but we do expect results for some tests in 1 month and others in 6 months. We are not exactly sure how much of it will be actionable, but building up Jackson’s file will really help us if/when new studies or trials come up. So, while this might not be what you expected to come out of this adventure, we are happy with how it went overall and cannot wait to see what the future holds!

XOXO