Search Results: outside

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
Pictures
She got her own badge. We got the news that we can leave! Exploring the apartment. Playing with Faith and Joy. Swinging at the park. (More)
Posted by joyful on March 19, 2024, 9:25 pm
Category: Grace
Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
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
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
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
A Snow Day From God
Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.) Prayers for this week: Praises: We got a... (More)
Posted by joyful on January 29, 2024, 10:09 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
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
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
Swiss Army Knife + Thumb = ER (April 4, 2015)
From an email written to my mom on April 4, 2015 at 7pm. Just after noon, Noah came screaming in from outside.  He was holding one hand with the other and blood was dripping.  I took him straight to the sink to wash off.  He couldn't tell me what had happened and there was... (More)
Posted by joyful on January 8, 2016, 1:22 pm
Category: Noah
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culpable-adaptable