Search Results: until

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
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date. Click here (or see below) for instructions to visit or send us mail. Hospital Mailing Address Grace Daley, 6 West Boston Children's 300 Longwood Ave Boston, MA 02115 Hospital Visiting... (More)
Posted by jondaley on February 19, 2024, 1:50 pm
Category: Grace
NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)
Posted by joyful on February 14, 2024, 7:45 am
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
Some Freedom, Some Nausea
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic... (More)
Posted by joyful on February 3, 2024, 5:44 pm
Category: Grace
Days -8 and -7
T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)
Posted by joyful on February 1, 2024, 2:21 pm
Category: Grace
Appointments today
Please pray for Grace's appointments today. Extensive dental work at 11AM under sedation (fillings and crowns), and sedation means fasting from now until after she wakes up; and then CT scan in the afternoon. We are scheduled to be there all day, so coming home to pizza and hymn singing will be... (More)
Posted by joyful on January 19, 2024, 6:42 am
Category: Grace
Two Days of Appointments
For the most part, these last two days went pretty well.  Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists. Her audiology appointment went pretty well.  The doctor was impressed with... (More)
Posted by jondaley on January 12, 2024, 3:18 am
Category: Grace
7th child, doesn't get a blog post...
We haven't been blogging much, just living life and having fun together.   But, it is sort of sad that Grace didn't even have a category for her until today.   We are working on more content and to make a central place for people to get information so we don't have to... (More)
Posted by jondaley on December 14, 2023, 3:29 pm
Category: Grace
Heating
Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too. We have five different heating sources for our home, and someday we'll get a sixth... 1a. Oil burner base board radiators. I grew up with base board radiators and I... (More)
Posted by jondaley on October 30, 2020, 10:46 am
Category: General, Reviews
Pocket Notes
I am posting my backlog of pocket notes. Sometimes details are sparse. 9/3 - Referring to two years ago, Jeremiah said, "The other day of the oott-her day (stretched out, and louder) we tipped over in the big boat." He wanted to know if the motor boat was going to tip over or not. So he... (More)
Posted by joyful on October 31, 2016, 12:00 am
Category: Jonathan, Noah, Joy, Jeremiah, Nathaniel
Isaac Memorial Reflection
I typed up my memorial service reflection for a presentation we did at our church recently.  I don't think it has been typed up before, so I thought I'd post it now.  (Am I allowed to be amazed at myself?) Heather's memorial reflection, March 16, 2003 Isaac Christopher Daley - a... (More)
Posted by joyful on June 17, 2016, 2:58 pm
Category: Isaac
Karate Tournament, Standish Maine
On Saturday, March 26th, Jonathan, Faith, Joy and I participated in our first karate tournament. The whole family rose bright and early so we could drive the two hours and 15 minutes to Standish, Maine.  This tournament is relatively small, with only about five dojos participating.... (More)
Posted by joyful on March 31, 2016, 1:14 pm
Category: General, Jonathan, Faith, Joy
Swiss Army Knife + Thumb = ER (April 4, 2015)
From an email written to my mom on April 4, 2015 at 7pm. Just after noon, Noah came screaming in from outside.  He was holding one hand with the other and blood was dripping.  I took him straight to the sink to wash off.  He couldn't tell me what had happened and there was... (More)
Posted by joyful on January 8, 2016, 1:22 pm
Category: Noah
Daley Vacation Washington DC
Got a bunch of spam comments and then when I was looking at posts, the boys pointed out that my last post was a month ago and I said "trip to DC goes in a separate post"...  So here we go. When we went into downtown to see the sights, we split up into smaller groups.  Jonathan,... (More)
Posted by joyful on April 23, 2014, 7:03 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
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