September 1 daytime update

• 6:35AM - Maureen is sound asleep.

• 7:05AM - No change

• 8:00AM - Maureen continues to sleep soundly—not stirring at all.

• 8:35AM - No change. Maureen has not moved and inch. Djon is now sitting at Maureen's bedside. I am in the kitchen.

• 9:21AM - No change. Sound asleep.

• 9:45AM - No change

• 10:00AM - Djon and I checked the undergarment. It was still dry. Since Maureen had been on her left side for more than four hours, we repositioned her on her right side. While we were making the transition to Maureen's right side, she opened her eyes for a brief period of time. It was our intention to get Maureen's day started. There was little responsiveness/engagement. Djon offered her swabs of water. She was not receptive. He moistened her lips and front teeth with the swab. We applied lip balm and La Mer serum to Maureen's hands and arms. Maureen feel back asleep a few minutes after we got her on her right side. After considering all of the factors, we decided it best to leave Maureen in bed until she becomes more alert and engaged.

• 10:55AM - Maureen began to writhe around in bed. Her hands were somewhat tightly clenched. She moans occasionally. Eyes open wide from time to time. They do not stay open permanently. She blinks somewhat regularly. Maureen is taking water from the swab regularly. Overall, we are not seeing any one or combination of signs that would indicate seizure. It has now been almost three days since the last BM. We may administer a suppository in the near future.

• 11:32AM - Djon just gave Maureen a suppository.

• 12:01PM - Maureen has calmed down. She is very sleepy but not going to sleep. Groans have almost completely gone away. She is no longer writhing around in bed. As best as we can tell, the suppository has not produced a bowel movement yet. Djon and I will most likely perform a clean & change in 30 minutes or so.

• 12:30PM - Djon went through the series of stretching exercises of Maureen's arms and legs. The hope was that some physical activity would produce a bowel movement.

• 12:41PM - Djon and I began to clean & change Maureen. The diaper was medium wet. As we were completing the process and preparing to place Maureen in the sling, I smelled a potential bowel movement. Maureen did have a medium soft bowel movement. Djon and I repeated the clean & change process. Upon completion, we headed to the kitchen for lunch.

• 1:17PM - Djon administered a dose of Flonase into each nostril.

• 1:30PM - Lunch | Maureen enjoyed 1/2 of a turkey & provolone sandwich on rosemary parmesan bread. She drank 6 ounces of prune juice during the lunch service. Djon mixed the 1/2 cap of MiraLAX into the prune juice. Djon administered all of the morning medications during the lunch service.

• 2:01PM - Djon administered 5ml of Keppra.

• 2:25PM - Afternoon oral care

• General observations @ 2:33PM> Maureen had less than average energy as she sat at the table. Eyes were partially closed throughout lunch. Posture was not great. Her head was tilting back more than normal. Engagement and communication were less frequent that we would like to see. Coughing was more frequent than what we typically observe—10 times. Some of the coughs were of the hard and grinding variety. Overall, it was good to get Maureen out of bed; however, lunch was definitely a challenge today.

• 2:40PM - We tilted the geri chair back one level for Maureen's comfort and to relieve pressure on her sacrum. Djon gave Maureen a facial treatment that included a warm washcloth and application of facial cream.

• 3:05PM - We took Maureen to the bedroom for a clean & change. The diaper was heavy wet. Maureen also had a small soft bowel movement. After wrapping up the process, Djon and I transported Maureen to the front room for the remainder of the day.

• 3:35PM - Afternoon fruit snack.

Daily Cough Count

​Breakfast	Smoothie	​Lunch	​Fruit Snack	​Other	Red Face
N/A	N/A	10		3	2