Daley Ponderings

Jon just put this comment on a recent post, but I don't think most people get notified of comments, so I'm posting it here: She's getting an echocardiogram right now [July 9, 2025, 8:42am] , and then an MRI, regular oncology checkup, opthamology and audiology. We don't expect too much... (More)

Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)

As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)

Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in... (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)

As they say, no news is good news.  Not much exciting has been going on lately.  Grace is eating a fairly regular diet at meals, which has always been pretty small.  Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml... (More)

Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same  sushi buffet  that some... (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)

Here are the brief notes I put together about our family vacation to Baltimore.  This year, the entire Daley clan was able to come (Barbara, Phil, and all their children and grandchildren!) Thursday drive down very good, even through NYC, thanks to google traffic. Looked up heights and... (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)

9/19 - Joy  has been telling me when she needs a new diaper (patting her bottom) but this day, she got out the changing pad and wipes, set up the pad on the bathroom floor, put a new diaper on top of the wipes box, lay down on the pad, and called for me. 9/20 - Noah is definitely our... (More)

Here are the last ones to share, I'll try to be more careful in the future to link to posts properly when I "share" things, so you can actually see the content regardless of whether facebook or google or the original poster make it difficult... Statistics in science : I don't quite... (More)

More than a month's worth of notes... 10/3 - Joy's diaper was dry all night long.  She went in the potty three or four times.  This was exciting to me and so the next night I prepared to be diaperless.  I spread a waterproof pad, with towels on top.  But she and I are so... (More)

5/23 - Joy is chomping and chewing.  I suspect she is an early teether like Noah and Faith. 5/30 - Joy rolled front to back. 6/2 - Joy crawled in bed 18", with diaper Joy is grabbing and exploring what she finds.  Likes fabric especially. Worked really hard on a board book.... (More)