Since we've been home

We're doing our best to settle in since coming home late Wednesday.

Steve's symptoms seem to get a tiny bit better every day.

Today he's been able to say three or four words before catching his breath. Yesterday he could say just one word before taking a breath.

He's moving around at home more than in the hospital. Every time he walks with his walker (very small distances), he gets a little better. He's talking out loud as he walks to help him relearn what to do -- "Right foot forward. Stop. Left foot forward."

He's been eating at least two meals a day at the table with us. He needs to sit up at least half an hour before eating (after he takes Reglan) and an hour after eating to reduce the chance of acid reflux, which could lead to coughing, which could lead to aspiration. In those before and after times he's able to play with the kids or watch them play or just enjoy being upright in his own home.

I've been working with hospice representatives off and on since we came home -- chaplain, social worker, admissions nurse, case manager nurse, pharmacists and home health equipment people. I think that this transition period will be the most time intensive. Once we have a routine down, everyone should fit more naturally into the schedule.

A home health aide will be here for about 90 minutes three days a week to help with bathing and other simple tasks. She begins work Monday.

The case manager nurse will stop by once a week to take vitals, check on symptoms and change Steve's PICC line dressings. (One outstanding question is if Steve will keep the PICC line, which was installed for chemotherapy, which he can't get now for a while.)

We can call on additional services as needed -- massage therapy, music therapy, counseling.

Aunt Ami returned home today, after spending nine days at the house. Sarah spent a few hours here today, running errands, cooking, taking Cooper and Katie to the pool. Jim and Betty will be here soon to help us celebrate Cooper's eighth birthday, which, he'll tell you, is official at 7:07 p.m.

We loved being home for our anniversary yesterday. We opted for takeout dinner at home, with Cooper, Katie and Ami. It wasn't like some of our fancy outings of the past (Stephan Pyles, the French Room). There's nothing like an inoperable brain tumor, pulmonary embolism and hospice to put the celebration in perspective. Being together is all that really matters.