Mom gets up at 3:30. Makes coffee and lets the dog go out. Wakes Dad and goes to work at 4:30 am. (She's a baker for the Meals on Wheels and Senior Meals Program.)
Dad cleans and gets the house ready for the masses to wake up.
By 8am Dad takes Henry's temp, and checks his diaper. Dad checks the notebook to see what meds Henry had over night. Regular medications start at 8am with a bolus feed of water or formula.
Between 8 and 9, Lewis eats and gets a diaper change, the dog goes out again. Dad begins making phone calls to various establishments and then coordination on CNA's, volunteers and nurses begin. Brendan usually comes on the weekends, to sit an listen to music with Henry.
At 9am Mom calls to check in and coordinate the older kiddos schedules with the rest of the house. Zane has camp and essential running around with 'the guys' and Anastasia has important teenage duties to attend to. Chores are supposed to be done on Mondays, but are usually successfully put off until Tuesday - or recently - never.
Dad does more feeding and diapers. Henry does a bolus feed every 2 hours. Meds are administered every 1 - 2 hours depending on pain level.
Dad does laundry, dishes, sweeping and mopping.
Lewis eats every 45 minutes when he's not climbing up the furniture and trying destroy everything. (He ate some of Mom's carving supplies today.).
Mom usually gets home between 11am and 1pm. Catches up with the events and showers. Then the errands begin. Bank, supermarket, post office. She packages items that have been purchased from her shop and spends some time creating new items to list in her Etsy shop. Mom is currently catching up with her two classes that she's neglected. Her instructors and the administrators have given her 60 days to complete her missing work - so that she can start fresh in the Fall.
Rhonda a CNA comes on Mondays and Wednesdays.
Trevecca and Rebecca usually visit once, sometimes twice a week.
A CNA (Usually Rhonda) comes over. Helps bath Henry and change his bedding. Jess comes on Tuesdays and gives Henry a mani-pedi. He laughs when she does his toes.
Pharmacy delivers sometimes at 2, sometimes at 4pm, sometimes at 2 and 4 pm. Today we say Michelle, a CNA at 2ish - with meds and smoothies for everyone!
Diaper and bolus for Henry at 2pm.
"I pooped," Might as well change Lewis too.
If it's a day that Henry needs a suppository to assist a BM, we try to give it after lunch.
By 3pm everyone is tired. "I wanna pway outside!!" Lew loves the sun and has finally learned to pedal his tricycle. Round and round and round in circles... today he rode through the sprinkler that mom put on the driveway for him. Lew refuses to nap so he's usually obnoxious and very antagonistic by late afternoon. Sometimes, he runs around in circles to keep himself awake.
Every 2 hours (Sometimes more often - like today) Dad sends Henry's nurse all of his vital information. Temp, heart rate and respirations.
Dinner? What's for dinner? A couple of times a week someone might bring us a meal or have Pony Express deliver something. Our out-of-town friends have had a larger showing when it comes to meals, than our local community.
Sometimes we have ice-cream cones.
One last ride around the carport.
Check Henry's vitals. Give night time meds. Change diaper. Check in with Casey.
Bed time - diapers, medicine, conversation with nurse.
By 9pm everyone is tucked in. Mom sleeps 'on point' with Henry in the living room during the week.
Meds are given on nights when Henry has pain. Every hour sometimes.
At 3:30 am the alarm sounds and the day begins again.
Some days Henry vomits. Some days he sleeps. Some days it looks like he might be in shock.
He is 'declining' but it's a quiet slide. Some days he's better than others. Some days his color is terrible. Some days he's right as rain. Some days he loves Mickey Mouse. Some days he sleeps through everything.
Every day we watch, take notes and try to cope.