Daley Ponderings

Our week has been somewhat full, with a few extra church services, including Maundy Thursday with handbells, which I didn't find out until the end of the service that it wasn't recorded, and I meant to record it during rehearsal, but I forgot.  But, it went well, despite Jeremiah being... (More)

Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress.  Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult... (More)

I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc. Her hair is growing in, and I don't think... (More)

We were so relieved and happy to have Jon and Grace with us for Family Camp. Daley summer life has been super full as usual.  Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)... (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)

We are headed home on Monday!   Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.... (More)

We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (More)

Grace has been steadily improving.  She is not throwing up as much, she's had a few messy diapers that look more normal than she's had in months, or even ever. She had an ultrasound which she slept right through.    Her drain has not been putting out much, so... (More)

From Jon  "[Yesterday's ultrasound] didn't report too much that we didn't already know. There was a little fluid in her abdomen on that side, so I wasn't expecting much, but a fair bit came out last night, I think 100 mls in the last three drains. The fluid near her lungs is almost gone.... (More)

Grace is not feeling so great today. I approved for them to give her another anti-nausea med in the hope that she will feel like eating. She has mostly only nibbled so far today, though she did eat a reasonable amount of eggs. She is painting right now, but definitely not her cheerful self. (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)

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)

1/4 - JPD, breaking off celery stalk, "Wow! Big whacker!  Bad guy come in our house, me whack him!" 1/4 - NPD signing "more" 1/5 - Joy, holding necklace, "I made it symmetrical, with yellow in the middle." 1/7 - NPD said, "amen" after we did at dinner.  This has happened a few... (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)

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)