Daley Ponderings

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)

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)

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)

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)

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)

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)

Joy has designed a tshirt for Grace's cancer journey. We are selling them as a fundraiser for David's House . They cost us $20 each,  but we're selling them for $10 minimum and any amount you give over $10  will be donated to  David's House , the free housing we... (More)

(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)

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)

Highlights from my Mother's Day, in addition to playing handbells: Nathaniel went in to the bid kids' room to give Jeremiah a morning hug and "hewwo!" Nathaniel belly laughs. Jonathan sang all the verses of Fairest Lord Jesus while washing dishes. (More)

9/2 - NPD definitely pulling up (on bathtub) - see Mom's post of Maggie P. 9/2 - NPD, "ma-ma-ma" "na-na-na"  JDD is convinced it means "Mom" 9/2 - Joy, "2+3 is 5. [pause] I learned that in bed."  Subsequently also taughtherself other addition facts. 9/2 - Joy making bracelet... (More)

7/6 - Noah is building a paperboard New England village. 7/6 - Jeremiah opened the cupboard under the kitchen sink with the TotLok. He was so proud of himself.  "There we go.  Open!"  (sounds like "deh-do. Opih!") He closed it and opened it several times, each time repeating... (More)

I'm very much behind on the blog.  But I have kept the pocket notes safely typed up in my email.  So here goes. In June, the kids and I made a trip to Florida to visit my parents, and my sister and her kids visited, too. 6/14 - Joy, "Mommy! I saw a dinosaur!"  (It was a... (More)

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)

The boys (and Heather has enjoyed it too - I haven't gotten to it yet) have really been enjoying Khan Academy this last week.  It is an educational tool, with lots of questions to test you on different skills.  Jonathan is especially motivated by the reward badges it gives you when... (More)