Daley Ponderings

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)

We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)

This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you. An "aspirate" in this context means removing a small amount (7 ml in Grace's case usually) of the bone marrow fluid and a biopsy is removing a small chunk of... (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)

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)

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 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)

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)

Had sushi after a day of appointments at the Dana Farber Cancer Institute.    We're staying overnight tonight. Had a lot of blood tests today and then a bunch of meetings with various providers to discuss next steps.   Audiology, dentist evaluations and an... (More)

We were intentionally not posting online to allow for some in-person notifications, but we are happy to now announce that we are expecting a baby in late May!   There are various people rooting for a girl to make the statistics and/or pattern more "fair", but we don't know for now and... (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)

Got a bunch of spam comments and then when I was looking at posts, the boys pointed out that my last post was a month ago and I said "trip to DC goes in a separate post"...  So here we go. When we went into downtown to see the sights, we split up into smaller groups.  Jonathan,... (More)

12/4 - F putting on chapstick.  Joy recalls, "Last time my lips sting.  Now my lips better." 12/6 - JDD, in a growly voice, with a straw stuck in his teeth and the other end in a glass of water, "I am the savage, saber-toothed mosquito!" 12/6 - JPD upper right primary incisor 12/7 -... (More)

Having a dad in the fire department is educational in more than just fire safety: 5/17 - Jon is called to an accident "involving motor vehicle vs. moose" 5/18 - Jonathan reads about moose and siberian tigers on wikipedia ~5 - Joy says "owee here" = outta here 5/20 - jpd 17 lb on our... (More)

I received a free "embedded" light from Microsoft a number of years ago.  I put "embedded" in quotes, because I think it is funny that Microsoft considers a lightbulb connected to a USB power source an example of an embedded device.  I guess I haven't looked that carefully, but I... (More)