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Catchup the last few days
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)
Posted by joyful on February 7, 2024, 7:51 am
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
Third Dentist...
Warning: I'm feeling better now, but the following post pretty accurately how I felt for most of today. After a good appointment in Hillsboro, they still wanted us to go to a pediatric dentist who was familiar with chemo/transplant issues, so Heather headed up to Dartmouth this morning in the... (More)
Posted by jondaley on January 16, 2024, 11:51 pm
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
Grace: Two Years of Unexplained Medical Issues
(this was written January 2024, referring to Grace's first two years of life) When Grace was about six weeks old, right at the beginning of December 2021 , I noticed that she had “ café au lait spots .” I looked it up on the internet, and discovered that these... (More)
Posted by joyful on January 8, 2024, 2:33 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
Why Jon Is A Great Dad
There are, of course, many examples of why Jon is a great Dad, but this is a particular one I'd like to record. One evening, Jon and I were resting together in our bed.  Suddenly, from the other room, we heard a panicked cry, "Someone help me!!  AAA-AAA-AA-AAAAA!!"  Jon jumped... (More)
Posted by joyful on October 27, 2018, 11:43 am
Category: General, Jeremiah
Molars, Hair, Tape Armor
6/17 - Nathaniel gets three molars at once.  upper left, lower left, lower right.  The upper right made its appearance 6/22. 6/21 - Haircut day for some.  (It's pretty hard to get everyone in one day.)  I cut Noah's hair, and some of Jeremiah's (he got impatient and I... (More)
Posted by joyful on June 25, 2016, 7:06 am
Category: Noah, Faith, 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
Daley Vacation 2016 - Baltimore
Here are the brief notes I put together about our family vacation to Baltimore.  This year, the entire Daley clan was able to come (Barbara, Phil, and all their children and grandchildren!) Thursday drive down very good, even through NYC, thanks to google traffic. Looked up heights and... (More)
Posted by joyful on June 17, 2016, 2:36 pm
Category: General
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
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
February 2016 Pocket Notes
2/2 - Noah and I walked past the food pantry on distribution day, and saw a friend of ours heading there. He asked if she was donating food and I explained that she was receiving food.  He wondered why she needed to get food from the food pantry, and we had a good discussion about the... (More)
Posted by joyful on March 1, 2016, 3:16 pm
Category: General, Jonathan, Noah, Joy, Jeremiah, Nathaniel
May and June 2015 Pocket Notes
5/6 - Jonathan is as tall as Mom! 5/7 - Faith, "Ramen numerals" 5/8 - Jeremiah, "Don't touch it."  I think that's his first three word phrase. 5/9 - Jeremiah was looking at the New Bible Dictionary that has a painting of the last supper (or something like it - Jesus in the middle... (More)
Posted by joyful on February 29, 2016, 7:57 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel
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