Search Results: brain

Healing and Testing
Jon just put this comment on a recent post, but I don't think most people get notified of comments, so I'm posting it here: She's getting an echocardiogram right now [July 9, 2025, 8:42am] , and then an MRI, regular oncology checkup, opthamology and audiology. We don't expect too much... (More)
Posted by joyful on July 9, 2025, 8:47 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
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
Possible neurofibroma
From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine. However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing... (More)
Posted by joyful on January 31, 2025, 3:13 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
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
Taking an Interest
Or: How This Mom Started Playing Minecraft They say that a good way to show love is to take an interset in what the other person is interested in, even if you wouldn't care about it on your own. I'm a busy mom and wife of an entrepreneur, right?  I don't have time for video games.... (More)
Posted by joyful on July 30, 2016, 6:38 pm
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
5/1 - Joy playing with even/odd dot cards.  Didn't quite get the concept but sometimes was lucky, so I praised the correct answers.  Then 6/2 - much more consistently correct. 5/1 - Jeremiah, watching the kids in karate class, copying them - doing punches from the "en guarde"... (More)
Posted by joyful on June 9, 2014, 9:44 pm
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
2/15 - JPD walked up to me and hugged my knees.  He now does this often. 2/19 - JDD quotes from The Incredibles, with an Indian flair: "This is your automated captain speaking. Would you like more samosas?" 2/24 - JDD "What's the difference between lo mein and chow mein, and why isn't... (More)
Posted by joyful on March 23, 2014, 5:44 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
1/18 - JPD tongue cluck noise 1/16 - JDD riddle: Toothless I bite, Voiceless I mutter, Legless I move, Mouthless I stutter, I am nearly indestructible, though walls will stop me. What Am I? (answer at the end) 2/1 - JPD upper left 2nd incisor 2/5 - JPD point at wii, shake head "no" 2/7 -... (More)
Posted by joyful on February 15, 2014, 4:49 pm
Category: Jonathan, Faith, Joy, Jeremiah
Marriage Retreat
Heather and I had the opportunity to attend a marriage retreat with 10 or so couples from our church this weekend, up at Rangeley Lake in Maine (thanks Scott, for the house!) We were the youngest couple (by far, the average marriage length represented there was 31 years), and we haven't... (More)
Posted by jondaley on October 7, 2013, 12:59 pm
Category: General
Long Time Coming - Pocket Notes
6/14 - On our camping trip, Faith liked to play Ice Cream Shop.  Her flavors are unique: pineapple hot sauce, strawberry beet, water, to name a few.  After those, I requested just plain ice creams, though she really wanted to put hot sauce on most of them.  We finally settled on a... (More)
Posted by joyful on August 17, 2011, 7:11 am
Category: General, Jonathan, Noah, Faith, Joy
Remember, Remember, The Fifth of November
We began the day learning about Guy Fawkes Day (Jonathan says now if we ever visit England he wants to visit at the beginning of November so he can participate in the festivities.)  We ended the day by taking Daddy to the ER.  Jon's notes in italics . It was quarter of five... (More)
Posted by joyful on November 8, 2009, 7:19 pm
Category: General
I Love Word Problems
I was searching for Noah's first word on our blog (I found his first signed word: please, but I couldn't find his first spoken word) because Faith has started talking a little, and I don't know exactly what her first word is, probably "hi".  But, today, she has repeatedly said,... (More)
Posted by jondaley on October 15, 2009, 1:22 pm
Category: Reviews
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