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The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)

Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace

Better but hard

Day +4 Grace has not thrown up at all today! She even had an episode where she ate too much macaroni at once, and was able to spit it out without actually throwing up. She does have evidence of the mucositis in her intestines, and a little bit in her mouth, but that part is doing pretty... (More)

Posted by joyful on February 12, 2024, 6:08 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

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

Capital One Referral Code

I switched to Capital One after being with Citibank for years (decades, actually). Citibank started a poor security practice of sending you a text message that says "never share this with anyone", and then they ask you to repeat that code over the phone (even after authenticating me with... (More)

Posted by jondaley on January 12, 2022, 11:30 am
Category: Reviews

Pocket Notes

I am posting my backlog of pocket notes. Sometimes details are sparse. 2/1 - Jonathan, "Even Einstein didn't have a triple-digit IQ." Noah, "Isn't that the guy with screws in his ears?" Jonathan, "No, that's Frankenstein." Noah is losing teeth all the time, I have trouble keeping track... (More)

Posted by joyful on March 31, 2017, 12:00 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel

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

January 2016 Pocket Notes

1/4 - JPD, breaking off celery stalk, "Wow! Big whacker! Bad guy come in our house, me whack him!" 1/4 - NPD signing "more" 1/5 - Joy, holding necklace, "I made it symmetrical, with yellow in the middle." 1/7 - NPD said, "amen" after we did at dinner. This has happened a few... (More)

Posted by joyful on March 1, 2016, 3:07 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

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

Blogging and Catching Up

I am the kind of person who enjoys writing. I process my thoughts well by writing, and I like recording my thoughts and my family's life. This year, I will be posting more. At first, most will be catch-up posts. I have a whole year of pocket notes to enter, not to mention... (More)

Posted by joyful on January 6, 2016, 9:09 am
Category: General

Pocket Notes

12/26 - Daley Christmas. Baby cousin G gets a pretty dress. People exclaim over it. Big brother C says, "I'm not impressed." 12/28 - C, "Dad, [cousin] O says 'ellow' for 'yellow'". Ben, "That's ok, bud." C, "It's not ok with me." 12/30 - Joy counts to 30. 1/5 - Jeremiah gets... (More)

Posted by joyful on January 22, 2015, 2:41 pm
Category: Jonathan, Pregnancy, Noah, Joy, Jeremiah

Pocket Notes

5/1 - Joy playing with even/odd dot cards. Didn't quite get the concept but sometimes was lucky, so I praised the correct answers. Then 6/2 - much more consistently correct. 5/1 - Jeremiah, watching the kids in karate class, copying them - doing punches from the "en guarde"... (More)

Posted by joyful on June 9, 2014, 9:44 pm
Category: General, Jonathan, 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