Search Results: morning

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
NF1 Appointment
The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be... (More)
Posted by joyful on November 6, 2024, 6:17 am
Category: Grace
Birthday surprise
Grace has had a fun birthday overall, with balloons and presents and blowing out the candles. But tonight, during her line flush, the white side busted a hole through, up above the clamp, near the Y . We did our best with a paper clip clamp, but Jon took Grace to the fire station... (More)
Posted by joyful on October 24, 2024, 10:15 pm
Category: Grace
Better, but always an adventure
Grace woke up Friday morning wanting to eat and drink, and she has kept everything down. There is a cold running around our house, which I thought she was getting last night, but she seems ok this morning. However, she did wake up with her nose tube pulled out again. So we are trying out the day... (More)
Posted by joyful on October 20, 2024, 10:48 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
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
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
Investigating GI issues
Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)
Posted by joyful on June 25, 2024, 6:20 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
Discharged!
We left the hospital at 5pm today and are "home" at our new apartment and working out this phase.  Lots of meds to organize and schedule.  Getting used to a quiet room, so now we can actually hear the feed machine, where I never really heard it before.   Heather will be... (More)
Posted by jondaley on March 17, 2024, 10:03 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
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
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