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Plexiform
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid... (More)
Posted by joyful on April 10, 2025, 12:31 pm
Category: Grace
One year home; biopsy results
One year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this year, and we are thankful.  Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies... (More)
Posted by joyful on April 8, 2025, 4:23 pm
Category: Grace
MRI Scan
As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)
Posted by jondaley on February 12, 2025, 5:57 pm
Category: Grace
Day +1
Faith steadily improved throughout the day as she slept through most of it and has now transferred to our Boston apartment. She got a present (mailed to Grace at the hospital) so that was fun. Grace's diaper rash did not get worse overnight, and without oral meds, she ate well and did not... (More)
Posted by joyful on February 9, 2024, 9:41 pm
Category: Grace
Dartmouth Emergency Room
The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an... (More)
Posted by joyful on January 8, 2024, 2:37 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
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
Nathaniel words
I am posting my backlog of pocket notes. Sometimes details are sparse. more (sign too) = "moh", also means "I want that" Mom ow bang/bonk yum signs please uh-oh ball door oh hot come = "mum", usually repeated, with hand signal whoa no hand plug broke(n) = "boke" milk,... (More)
Posted by joyful on July 25, 2016, 12:00 am
Category: Nathaniel
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
Nathaniel's First Enjoyable Snow
April 4, it snowed six inches.  The next day, I wrote this: Today the snow is still there and the sun is out and the sky is bright blue.  It feels like a gorgeous February day! But since it is April, Nathaniel is just that much more developed that he can enjoy this snow day to... (More)
Posted by joyful on April 17, 2016, 3:59 pm
Category: Nathaniel
A Compassionate Heart
On the evening of March 4th, we were on our way to the church to get our portraits taken for the upcoming new photo directory. It was a bit chilly outside, but I didn't put my hood on because I didn't want to have to fix my hair when we got there. Jeremiah had just woken up from a nap so I... (More)
Posted by joyful on March 31, 2016, 1:05 pm
Category: Jeremiah
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
March and April 2015 Pocket Notes
3/2 - I told Jeremiah I'd clean up the (play) food because he was still playing with the cars.  He came up to me, gave me a big hug, and said, "Thank you" (sounds like Duh-doo).  So sweet! 3/2 - Faith offered to ask Dad-o to walk them to Joyful Noise, "'Cause...I want you to have... (More)
Posted by joyful on January 8, 2016, 12:04 pm
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel
Marriage Retreat
Heather and I had the opportunity to attend a marriage retreat with 10 or so couples from our church this weekend, up at Rangeley Lake in Maine (thanks Scott, for the house!) We were the youngest couple (by far, the average marriage length represented there was 31 years), and we haven't... (More)
Posted by jondaley on October 7, 2013, 12:59 pm
Category: General
Pocket Notes
Faith had a blast at Star Island with Grammy and Papa. 7/25 - JDD, explaining why he likes to use a certain spoon for his breakfast cereal, "That spoon is special to me, because Grammy gave it to me for Christmas last year." 7/28 or 29 - Joy had a cold and I gave her 1 or 2 nebulizer... (More)
Posted by joyful on September 14, 2013, 11:30 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
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culpable-adaptable