Daley Ponderings

Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth.  I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say.  Her skin is very dry and she has rashes in places, and also the dryness is itchy so she... (More)

Last weekend, Heather took all of the girls on a retreat and had a lot of fun together.  Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church.  Elbereth, Jonathan's snake, was out and various people... (More)

Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)

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)

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)

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)

(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)

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)

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)

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)

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)

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)

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)

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)