Daley Ponderings

Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)

Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital. She has been doing quite well the last few days and much more cheery.  Nothing like a colonoscopy to cheer you up I guess.  I hadn't been paying... (More)

Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think,... (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)

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)

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)

(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)

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)

11/2 - Jeremiah, "Aunt Prudence gave us this one."  perfect grammar 11/3 - Jonathan, "Mom, did you know that if you take the 'c' out of 'record' and add 'er' at the end, it becomes 'reorder'?" 11/3 - Jeremiah, walking backwards with finger in front of his face, "Me try to pick [scab],... (More)

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)

Once again, we were blessed to have Grandma and Dad-o with us for a birth. Jeremiah was still too clingy on Mommy for us to be comfortable having him at the birth.  He did well completely away from me, but had trouble when nearby and I was unavailable.  That is exactly the situation a... (More)

We went sailing today in the Black Rabbit, which is the name of our Flying Junior.  I do need to find out the history of it, because I think I don't have it quite correct.  But Heather's grandpa have it to her when she was a kid and we've sailed it since we were married. It needed 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)

9/13 - A Friday. Jonathan had been asking me if he could read Harry Potter for a while.  I told him I needed to talk to Daddy about whether we thought he was ready, but I kept forgetting.  The strategy that worked was asking me in Daddy's presence so I didn't have time to forget. ... (More)