Search Results: done

MRI Scan
As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)
Posted by jondaley on February 12, 2025, 5:57 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
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
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
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
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
Happy, Happy, Happy!
Grace sings this little Happy song at least once a day. She sang it in the hallway as we were leaving the apartment to go home. I have not yet managed to get a video of her singing it. Everybody is doing better now that we're all together. It's good to be home; it's good to not have to try to... (More)
Posted by joyful on April 10, 2024, 9:59 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
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
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
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
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