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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
Fever and Admission
When Jon and Grace got back from Dartmouth, Jon asked me to take her temperature.  He could feel that she was hot, but the thermometer they used at Dartmouth did not register a fever (it was the kind that you hold a centimeter away from the forehead.)  My initial armpit reading was... (More)
Posted by joyful on June 26, 2024, 8:55 am
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
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
Admission Day and Chemo Begins
Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update. We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street... (More)
Posted by joyful on January 31, 2024, 6:43 am
Category: Grace
Next Steps: Boston Children's Hospital / Dana Farber Cancer Institute
Due to getting COVID, Grace's transplant date has been re-scheduled and we are currently scheduled to start the prepatory chemo (much stronger than the previous chemo she has received) on January 30th and then the bone marrow transplant a week later. We expect to be in the hospital for at... (More)
Posted by joyful on January 8, 2024, 2:51 pm
Category: Grace
Pocket Notes - Joy ties shoes, Heather does pushups, and more
4/3 - I said to Jeremiah, "Your shoes are on the wrong feet, sweetie."  He replied, "I not 'sweetie'.  Joy is 'sweetie'." 4/10 - Joy and I spent a grueling but satisfactory three hours earning our yellow and orange belts, respectively. 4/14 - Jeremiah, "It will be so so so fun if... (More)
Posted by joyful on April 17, 2016, 4:20 pm
Category: Noah, Faith, Joy, Jeremiah, Nathaniel
November and December 2015 Pocket Notes
11/2 - Jeremiah, "Aunt Prudence gave us this one."  perfect grammar 11/3 - Jonathan, "Mom, did you know that if you take the 'c' out of 'record' and add 'er' at the end, it becomes 'reorder'?" 11/3 - Jeremiah, walking backwards with finger in front of his face, "Me try to pick [scab],... (More)
Posted by joyful on February 29, 2016, 8:41 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel
Giant List of Pocket Notes
I'm very much behind on the blog.  But I have kept the pocket notes safely typed up in my email.  So here goes. In June, the kids and I made a trip to Florida to visit my parents, and my sister and her kids visited, too. 6/14 - Joy, "Mommy! I saw a dinosaur!"  (It was a... (More)
Posted by joyful on December 22, 2014, 2:04 pm
Category: General, Jonathan, Pregnancy, Noah, Faith, Joy, Jeremiah
Pocket Notes
3/23 - I told Jeremiah the toaster was hot, and he held up his hand, palm facing, but not touching, and said, "hah". 3/25 - Jeremiah was whining about something, and Noah, to cheer him up, said, "Why cry, my pygmy fly?"  It made me laugh anyway! 3/26 - JPD definitely says "hi" now,... (More)
Posted by joyful on April 27, 2014, 8:37 pm
Category: Jonathan, Noah, Faith, Joy, Jeremiah
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
Pocket Notes
2/15 - JPD walked up to me and hugged my knees.  He now does this often. 2/19 - JDD quotes from The Incredibles, with an Indian flair: "This is your automated captain speaking. Would you like more samosas?" 2/24 - JDD "What's the difference between lo mein and chow mein, and why isn't... (More)
Posted by joyful on March 23, 2014, 5:44 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah
Catch Up Pocket Notes
12/4 - F putting on chapstick.  Joy recalls, "Last time my lips sting.  Now my lips better." 12/6 - JDD, in a growly voice, with a straw stuck in his teeth and the other end in a glass of water, "I am the savage, saber-toothed mosquito!" 12/6 - JPD upper right primary incisor 12/7 -... (More)
Posted by joyful on January 18, 2014, 8:52 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
9/13 - A Friday. Jonathan had been asking me if he could read Harry Potter for a while.  I told him I needed to talk to Daddy about whether we thought he was ready, but I kept forgetting.  The strategy that worked was asking me in Daddy's presence so I didn't have time to forget. ... (More)
Posted by joyful on October 19, 2013, 8:08 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
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