Search Results: eating

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
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
Good moments, Bad moments
Jon wrote today: When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments". This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't... (More)
Posted by joyful on February 18, 2024, 8:40 pm
Category: Grace
Wanting to eat but not keeping it down
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a... (More)
Posted by joyful on February 11, 2024, 2:23 pm
Category: Grace
Day 0 - Waiting
Faith's surgery went well. Her vitals stayed stable the whole time and they are all happy with how it went. She said coming out of anesthesia was just like waking up in the morning only she couldn't lift her head at first. Jon went down to be with her and I stayed with Grace. Grace threw up... (More)
Posted by joyful on February 8, 2024, 2:24 pm
Category: Grace
Day -1
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)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
Nausea
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)
Posted by joyful on February 5, 2024, 10:50 am
Category: Grace
Some Freedom, Some Nausea
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic... (More)
Posted by joyful on February 3, 2024, 5:44 pm
Category: Grace
Days -8 and -7
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)
Posted by joyful on February 1, 2024, 2:21 pm
Category: Grace
Two Days of Appointments
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)
Posted by jondaley on January 12, 2024, 3:18 am
Category: Grace
Leukemia
The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute . Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing... (More)
Posted by joyful on January 8, 2024, 2:38 pm
Category: Grace
Grace: Two Years of Unexplained Medical Issues
(this was written January 2024, referring to Grace's first two years of life) When Grace was about six weeks old, right at the beginning of December 2021 , I noticed that she had “ café au lait spots .” I looked it up on the internet, and discovered that these... (More)
Posted by joyful on January 8, 2024, 2:33 pm
Category: Grace
Heating
Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too. We have five different heating sources for our home, and someday we'll get a sixth... 1a. Oil burner base board radiators. I grew up with base board radiators and I... (More)
Posted by jondaley on October 30, 2020, 10:46 am
Category: General, Reviews
February 2016 Pocket Notes
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)
Posted by joyful on March 1, 2016, 3:16 pm
Category: General, Jonathan, Noah, Joy, Jeremiah, Nathaniel
July and August 2015 Pocket Notes
7/6 - Noah is building a paperboard New England village. 7/6 - Jeremiah opened the cupboard under the kitchen sink with the TotLok. He was so proud of himself.  "There we go.  Open!"  (sounds like "deh-do. Opih!") He closed it and opened it several times, each time repeating... (More)
Posted by joyful on February 29, 2016, 8:09 am
Category: Noah, Joy, Jeremiah, Nathaniel
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