Jordyn had a very busy December!  Between appointments, therapies, Christmas gatherings, Santa visits, and birthday celebrations, we had something going on almost every day.  By the end of the month, we were all feeling drained.

January thankfully is much calmer.  We had 2 appointments in St. Louis and don’t have plans to return until March.  We saw GI and neurology last week. We may be changing Jordyn’s formula to better meet her needs, but we have to speak with the dietician first.  We’re also working on weaning one of Jordyn’s medications that tends to be very hard on her body and bones. Because her bones are already deteriorating, she is at risk for fractures.  We will be adding endocrinology to manage her bone density to try to avoid fractures.

In other news, Jordyn received a trial communication device from Able Net.  Her eye gaze has proven to be very difficult to use. It has given us trouble since we got it and it’s not working for her anymore. 

Jordyn is much more alert and excited about her new device. We’ve had it about a week now and she is doing so well with it!  She’s able to choose what she wants to watch, what she wants to play with, and music she wants to listen to. We’re still working on adding options for her, but it seems like the perfect fit for her.  It’s been so fun to see her able to communicate with us and have some independence!