Search Results: ready

Appointment Yesterday
Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)
Posted by jondaley on December 3, 2025, 10:38 am
Category: Grace
June 2025 Biopsy Results!
Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)
Posted by jondaley on June 20, 2025, 2:35 pm
Category: Faith, Grace
Day +456
Here's a quick update. Grace has some virus that she's fighting off and she gave it to me, too. In medical news, she had a checkup and echocardiogram on Tuesday and all that looks good. So far we haven't observed anything noticeable, either good or bad. She got fitted for a hearing aid, and... (More)
Posted by joyful on May 9, 2025, 1:21 pm
Category: Grace
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
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
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
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
Grace Will Be Three!
Next week is Grace's third birthday, for which we are exceptionally grateful. I know that there are a lot of people out there who love Grace and would probably like to do something for her birthday.  She has all the physical things she could need or want, so prayers would be the number... (More)
Posted by joyful on October 19, 2024, 11:04 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
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
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
Bone marrow aspirate today
This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you. An "aspirate" in this context means removing a small amount (7 ml in Grace's case usually) of the bone marrow fluid and a biopsy is removing a small chunk of... (More)
Posted by joyful on March 21, 2024, 5:13 am
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 +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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