Search Results: bed

NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)
Posted by joyful on February 14, 2024, 7:45 am
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 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
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
Her smile is still cute
Jon and I both went with Grace up to Dartmouth today.  The dentist met with us pre-op and said after looking at the x-rays, she thought her front teeth looked really bad and she expected to have to take out the four upper front teeth.  This just seemed horrible to us, but I signed the... (More)
Posted by joyful on January 19, 2024, 8:51 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
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
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
June 2016 Pocket Notes
6/1 - Nathaniel was playing with the nebulizer, dripped some of the leftover liquid, said, "Uh, oh."  Then he walked to the bathroom, opened the cabinet, got out a hand towel, came back into the bedroom and wiped up his spill. 6/2 - I asked Nathaniel to put the toy cars away and he did... (More)
Posted by joyful on June 17, 2016, 2:47 pm
Category: Jonathan, Noah, Joy, Jeremiah
April/May 2016 Pocket Notes
4/26 - Jeremiah, after his first bowl of non-sugar cereal, asked for some sugar cereal.Only two pieces fell out of the box when I shook it, and he said, "Not two.  I said'some', like this..." holding up several fingers. 4/29 - Jeremiah can tie knots.  He tied the laces of my... (More)
Posted by joyful on June 17, 2016, 2:41 pm
Category: Noah, Joy, Jeremiah
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
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