Search Results: year

Wanting to eat but not keeping it down
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a... (More)
Posted by joyful on February 11, 2024, 2:23 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
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
Fertility preservation
Monday, Grace had pre-transplant bone marrow aspiration and bone biopsy. That's kind of boring. The interesting surgery came right after that procedure. Fertility preservation is something I had vaguely heard of. I know it's rather personal, but so is all this health information. We won't be... (More)
Posted by joyful on January 24, 2024, 12:41 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
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
Insulation
Someone just asked for advice on Facebook, and I figured I should save it here so I don't need to type it again when someone asks later.   We've had just about every kind of insulation in our house. So, more than you asked for, but hopefully useful. Also, if you don't know about it,... (More)
Posted by jondaley on October 29, 2020, 10:40 am
Category: General, Reviews
In Memoriam
In honor of the end of World War I one hundred years ago today, I post a picture of Joy hugging the tree that was planted in memory of her great-great-granduncle Harry Faulk. See my mom's Armistice Day post for a few more details of my family's involvment in the war. (More)
Posted by joyful on November 11, 2018, 2:32 pm
Category: General, Joy
Pocket Notes
I am posting my backlog of pocket notes. Sometimes details are sparse. 4/1 - JPD, "'I'm goin' back to my work, after watchin' Jonathan do that awesome trick,' said Popcorn Man." 4/1 - Nathaniel started saying "yes" clearly - so cute!! 4/3 - NPD do turtle puzzle, self w/ encouragement... (More)
Posted by joyful on April 30, 2017, 12:00 am
Category: 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
Taking an Interest
Or: How This Mom Started Playing Minecraft They say that a good way to show love is to take an interset in what the other person is interested in, even if you wouldn't care about it on your own. I'm a busy mom and wife of an entrepreneur, right?  I don't have time for video games.... (More)
Posted by joyful on July 30, 2016, 6:38 pm
Category: General, Jonathan, Noah, Faith, Joy, 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
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