Search Results: dinner

Holy Week
Our week has been somewhat full, with a few extra church services, including Maundy Thursday with handbells, which I didn't find out until the end of the service that it wasn't recorded, and I meant to record it during rehearsal, but I forgot.  But, it went well, despite Jeremiah being... (More)
Posted by jondaley on April 18, 2025, 9:57 pm
Category: General, Joy, Grace
St. Patrick's Raining Taco Day
Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)... (More)
Posted by joyful on March 17, 2025, 8:16 am
Category: Grace
Day +235
I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc. Her hair is growing in, and I don't think... (More)
Posted by jondaley on September 30, 2024, 10:15 am
Category: Grace
Investigating GI issues
Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)
Posted by joyful on June 25, 2024, 6:20 pm
Category: Grace
Apartment Life
We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)
Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace
Home away from home
Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home. Grace was not happy to be stuck in a clinic room. First... (More)
Posted by joyful on March 19, 2024, 6:52 pm
Category: Grace
Hospital Time
We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (More)
Posted by jondaley on March 15, 2024, 6:34 pm
Category: Grace
Family Weekend
We've had some full days since our last post, so I'll try to catch you all up. On Friday night, Jon and the girls went to Camp Maranatha for the annual father-daughter retreat and the boys went to Boston to stay in the apartment. We went to Target to get some maternity shirts for Heather... (More)
Posted by jondaley on March 13, 2024, 5:09 am
Category: Grace
Hospital Helper?
Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same  sushi buffet  that some... (More)
Posted by jondaley on March 4, 2024, 10:21 pm
Category: Grace
Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Waiting and Watching
Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think,... (More)
Posted by joyful on February 24, 2024, 4:09 pm
Category: Grace
Day 9 a bit better
Grace had a fever overnight so Saturday morning they gave her Tylenol. She seemed a bit better, happier. She even gave me some smiles. She did not throw up all day. I suspect morphine as a cause, and I avoided pushing the button. The Tylenol seems to help enough, so I asked the... (More)
Posted by joyful on February 18, 2024, 9:25 am
Category: Grace
Day +1
Faith steadily improved throughout the day as she slept through most of it and has now transferred to our Boston apartment. She got a present (mailed to Grace at the hospital) so that was fun. Grace's diaper rash did not get worse overnight, and without oral meds, she ate well and did not... (More)
Posted by joyful on February 9, 2024, 9:41 pm
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 pm
Category: Grace
Day -1
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
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