Search Results: book

New Green Ember book giveaway
Because he likes to compete with Brandon Sanderson, SD Smith is launching a new Green Ember book today.  Our family loves the Green Ember series maybe even more than the Stormlight Archive. I've mentioned before that the soldiers' oath has special significance to us now that Faith has... (More)
Posted by joyful on December 6, 2024, 2:33 pm
Category: General
Broken fibula
Sometime recently, Grace fell off a wooden block that she was using as a stool. I thought she had twisted her ankle. She would complain on and off, but still often insist on walking. Then Sunday, Noah came to me and asked, "Did you know that Grace's foot is crooked?" So we decided it was time... (More)
Posted by joyful on October 30, 2024, 9:17 am
Category: Grace
Grace Will Be Three!
Next week is Grace's third birthday, for which we are exceptionally grateful. I know that there are a lot of people out there who love Grace and would probably like to do something for her birthday.  She has all the physical things she could need or want, so prayers would be the number... (More)
Posted by joyful on October 19, 2024, 11:04 am
Category: Grace
Day +170 Update
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)
Posted by joyful on July 26, 2024, 4:30 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
Even a Cold is a Big Deal
I've been meaning to write an update; I've even gotten started on one (labelled day +90: it's now day +97.) Overall, things have been going well, Grace's numbers coming back satisfactorily. But then she got a cold.  Just runny nose and sneezing.  But after her nap, she had a mild... (More)
Posted by joyful on May 15, 2024, 8:55 pm
Category: Grace
Apartment Life
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)
Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace
Home away from home
Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home. Grace was not happy to be stuck in a clinic room. First... (More)
Posted by joyful on March 19, 2024, 6:52 pm
Category: Grace
Day +27
Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...) She came to rounds in... (More)
Posted by jondaley on March 6, 2024, 11:34 pm
Category: Grace
Day +26
We have lots of good news to report. Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The... (More)
Posted by jondaley on March 5, 2024, 10:54 pm
Category: Grace
Liver problems and more pain
Noah did a good job driving in terrible Boston traffic, but it meant we got home late and I didn't get to talk to Jon for very long last night. The ultrasound revealed that Grace definitely has problems with her liver; she has also been in more pain. By the time I talked to them, she was content... (More)
Posted by joyful on February 29, 2024, 6:43 am
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
Better but hard
Day +4 Grace has not thrown up at all today! She even had an episode where she ate too much macaroni at once, and was able to spit it out without actually throwing up. She does have evidence of the mucositis in her intestines, and a little bit in her mouth, but that part is doing pretty... (More)
Posted by joyful on February 12, 2024, 6:08 pm
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 pm
Category: Grace
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