Search Results: symptoms

Plexiform
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid... (More)
Posted by joyful on April 10, 2025, 12:31 pm
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 +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
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
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 +75, No News is Good News
As they say, no news is good news.  Not much exciting has been going on lately.  Grace is eating a fairly regular diet at meals, which has always been pretty small.  Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml... (More)
Posted by jondaley on April 23, 2024, 6:40 pm
Category: Pregnancy, 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
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
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
Dartmouth Emergency Room
The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an... (More)
Posted by joyful on January 8, 2024, 2:37 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
Pregnant!
Cycles did not return after the miscarriage, and that along with other symptoms leads me to conclude that I am pregnant again.  The due date I am calling March 1. (I don't really think I can count the miscarriage as LMP and I have reason to believe that ovulation was a week later anyway.)... (More)
Posted by joyful on July 7, 2010, 10:59 am
Category: Pregnancy
Rashes and Power Failures
Jon first noticed red spots on Jonathan's tongue and soft palate while brushing his teeth.  Then we noticed bug bite/pimple-like spots on his knees and then Noah's knees.  Then Noah got more and more spots all around the edges of is diaper area and some on arms and legs. ... (More)
Posted by joyful on August 9, 2007, 8:36 pm
Category: Jonathan, Noah
Fun Weekend (long overdue)
Last weekend, Heather was sick with mastitis, which meant she just wanted to lie in bed all day with flu-like symptoms. It actually started on Friday morning, and she did get progressively better throughout the day, but still decided to stay home from care group that night. I was planning on... (More)
Posted by jondaley on September 24, 2006, 7:56 pm
Category: Jonathan
Jon Goes To The ER
Based on an excruciating headache Wednesday afternoon, October 12, that did not go away, Jon and I headed to West Penn Hospital Emergency Room at 10:30pm. A friend came to the house to watch Jonathan while he slept. Here is an aside - it was so good for Jonathan that he did not come, he would... (More)
Posted by joyful on October 24, 2005, 4:37 pm
Category: General
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culpable-adaptable