Another day down

Zayden's hand braces arrived last week, but today’s attempt by his therapists to adjust them for his hands was unfortunately unsuccessful. It’s back to the drawing board as they carefully figure out how to properly modify these nearly $2,800 braces so that they will fit Zayden’s hands and wrists perfectly. Once they determine all the necessary and precise adjustments, we’ll be making another trip to Ft. Myers to finalize and implement the changes. The ultimate goal is to create braces that will effectively straighten his wrists and help ensure his arms face forward instead of curving backward, which will make a big difference for him in the long run.

During a virtual check-in with the pulmonologist, we were thrilled to receive some very exciting news: Zayden no longer needs to wear the oxygen and heart rate monitor throughout the entire day, except for periodic hourly checks. He will, however, still need to continue wearing the monitor during his naps and overnight while sleeping.

This milestone moment means Zayden has now been freed from three significant restraints: the J-tube, which is gone permanently; the G-tube, which is now only used during feedings; and the oxygen/heart rate monitor, which is limited to hourly checks and sleeping time. In addition to all this, he now gets to enjoy two 30-minute breaks from the ventilator every single day, giving him a full hour of total freedom from all the hoses, wires, and tubes that have been part of his life for so long. It’s a huge and meaningful step forward for him on his journey to greater independence!

Zayden is also doing really well as he adjusts to wearing his foot braces. He only kicks them off when he wants to get some attention or feels that he’s had them on for a little too long—about 12 times during a 14-hour span, which is a big improvement from before. Previously, he was kicking them off every few minutes throughout the entire day, which made things much more challenging. This is real progress, and even though it may seem small, progress of any kind is still progress worth celebrating!