Search Results: hand

Holy Week
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)
Posted by jondaley on April 18, 2025, 9:57 pm
Category: General, Joy, Grace
Possible neurofibroma
From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine. However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing... (More)
Posted by joyful on January 31, 2025, 3:13 pm
Category: Grace
Thanksgiving for Grace
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)
Posted by joyful on November 25, 2024, 6:59 am
Category: Grace
Day +235
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)
Posted by jondaley on September 30, 2024, 10:15 am
Category: Grace
Day +144: GVHD
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)
Posted by jondaley on July 1, 2024, 10:21 pm
Category: Grace
Hospital Update
Grace has been on a clear liquid diet until today where she is getting nothing into her stomach until anesthesia at 5:30.  She will be getting a complete GI scope and a bone marrow biopsy.  Please pray for the anesthesiologist and the surgeons as well as for Grace. Jon called this... (More)
Posted by joyful on June 28, 2024, 8:42 am
Category: Noah, Grace
Day +55
We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
Hospital Time
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)
Posted by jondaley on March 15, 2024, 6:34 pm
Category: Grace
Hospital Helper?
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)
Posted by jondaley on March 4, 2024, 10:21 pm
Category: Grace
A step better
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)
Posted by joyful on March 3, 2024, 11:53 am
Category: Grace
Engraftment, Drainage, and God Answers
The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)
Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace
Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Waiting and Watching
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)
Posted by joyful on February 24, 2024, 4:09 pm
Category: Grace
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date. Click here (or see below) for instructions to visit or send us mail. Hospital Mailing Address Grace Daley, 6 West Boston Children's 300 Longwood Ave Boston, MA 02115 Hospital Visiting... (More)
Posted by jondaley on February 19, 2024, 1:50 pm
Category: Grace
Tough days
Grace has been in pain and sleeping a lot. These are the hardest days when her counts are low before Faith's cells take hold. I've been home and that's been good. It's hard to be away from Grace when she's suffering, but I know she's in good hands with Daddy. And it's been good to be with the... (More)
Posted by joyful on February 16, 2024, 1:46 pm
Category: Grace
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