Hey all! I hope everyone enjoyed their holidays with friends and family. We survived all the craziness…barely, but it was a nice time to visit with everyone and catch up.
Now that we are in the new year, we are eagerly awaiting our trip to Ohio and cannot wait to share with you everything we learn. I want to be as transparent as possible with everything, after all, that is one of the reasons we have this blog. So, to give you a glimpse into the next few days for our little man here is our schedule:
Day 1
- Developmental Assessment – 1 hr
- Developmental Assessment – 1 hr
- Play based Assessment – 1 hr
- Lunch/Nap
- NIRS Testing – This is similar to an EEG where he will wear a cap and watch some videos – 1 hr
- EEG – 1 hr
- Blood draw
- MRI while he sleeps – Attempt #1
Day 2
- Clinical appointment with Psychological Services
- Clinical appointment with Fragile X Psychiatrist/Pediatrician
- MRI while he sleeps – Attempt #2, if unsuccessful Monday night
We have a busy schedule and this will be a lot for our boy, but we are very excited to have found this Fragile X Clinic and to have these doctors in our corner as we continue on our Fragile Xperience.
Stay tuned to see what we learn and thank you to all our friends and family for the continued support. It truly takes a village!
XOXO
Our Fragile Xperience 