Good evening everyone. Grace has had busy day, today. She was out of the bed and into a chair early in the day, and has been there well into the evening. It doesn’t sound like much, but going from four weeks in a bed to sitting in a chair is huge progress. We are also grateful that her calcium levels have returned to normal.

Also, Mom and Dad had been concerned about the way the Trache sits on top of the tracheotsomy. Surgeons came to look at the healing area and determined that she needs a custom-made Trache. That’s Gracie, always so extra.

We are still struggling to get enough sleep at night. Today is her last day on sedatives. Hopefully we can put all of that behind us and get into a normal sleep cycle. People with epilepsy need a good night’s sleep most of all.

“Sprinting” was more like a crisp walk than a run, today. She didn’t do as well on the low settings of the vent. Needed a little more support. They also tried something new called a T-Piece. She was stable for four hours, and then her breathing got labored, so they switched her back to the regular ventilator.

This breathing thing we take for granted is so delicate. Take a moment right now to thank God for all the health you enjoy and the health of your family. Trust me.

Our going-home day is tentatively set for early next week. Let’s pray for that!

Love you all,
Feebs