Search Results: rest

Waiting for results
Screenshot of a video call on Thursday:  Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the... (More)
Posted by joyful on June 30, 2024, 6:41 am
Category: Jonathan, Faith, Joy, Nathaniel, Grace
Fever and Admission
When Jon and Grace got back from Dartmouth, Jon asked me to take her temperature.  He could feel that she was hot, but the thermometer they used at Dartmouth did not register a fever (it was the kind that you hold a centimeter away from the forehead.)  My initial armpit reading was... (More)
Posted by joyful on June 26, 2024, 8:55 am
Category: Grace
Bone Marrow Donation Isn't All Its Cracked Up To Be
When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it. She had 3-4 days of significant pain, and has certainly... (More)
Posted by jondaley on June 21, 2024, 8:37 pm
Category: Faith
Belly Hurts, Updated
Today is day +133. (Jon updated this post) Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she... (More)
Posted by joyful on June 21, 2024, 11:22 am
Category: Grace
Blue Shirt Picture #9
Today is the due date!  On Saturday, I had Noah take my traditional Blue Shirt picture. I'm ready to meet this baby!  My hips are sore from all the pressure.  I have to rest a lot, but not stay in one position for very long.  I did sleep well last night, for which I... (More)
Posted by joyful on May 27, 2024, 6:33 am
Category: Pregnancy
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
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
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
Discharge Parade
The kids who have been admitted for any length of time look longingly at the airlock doors that leave the hallway they are not allowed to leave.  So, when discharge day comes, it is a pretty exciting time. For those of you who are confused - yes this was published out of order since... (More)
Posted by jondaley on March 17, 2024, 11:00 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
Family Weekend
We've had some full days since our last post, so I'll try to catch you all up. On Friday night, Jon and the girls went to Camp Maranatha for the annual father-daughter retreat and the boys went to Boston to stay in the apartment. We went to Target to get some maternity shirts for Heather... (More)
Posted by jondaley on March 13, 2024, 5:09 am
Category: Grace
Day +30
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)
Posted by joyful on March 9, 2024, 10:28 am
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
New Room
In addition to the drain being installed yesterday, yesterday was moving day.  They have all patients move every month to allow for the room to be completely cleaned.  From the few examples I've seen, that generally means moving to a nicer room, since they can pick the day when the... (More)
Posted by jondaley on March 2, 2024, 7:22 am
Category: Grace
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