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Hearing aid
On Thursday, Grace got her hearing aid! They did a whole hearing test so they could program the device to her exact needs. The inner ear...
joyful, 30 May 2025 |
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...
Holy Week
Our week has been somewhat full, with a few extra church services, including Maundy Thursday with handbells, which I didn't find out...
Plexiform
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition...
One year home; biopsy results
One year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this...
Day +413, ear surgery
As far as we know, the surgery went well. He took two biopsies, one in front of the eardrum and one behind. There was not much fluid, so...
Surgery Tomorrow (Thursday, March 27)
As Jon mentioned, Grace is having ear surgery tomorrow to explore what's going on, get a biopsy, and maybe get a tube in. The...
Plexiform Results
An ENT, a radiologist and an oncologist walk into a bar... Oh, maybe not, but they at least had a discussion about Grace while...
St. Patrick's Raining Taco Day
Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital...
Upcoming appointments
Grace has her ear CT scan, and audiology and ENT appointments this Friday, March 14. April 17 is the scheduled date for her next bone...
A Prayer When You Are Faced with an Incurable Diagnosis
I get daily emails from GodTube.com, and they are often worth reading. Today's devotional was good. While I don't ever...
More Time For Praying
Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw This is my memory's summary of Jon's report...
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...
One Year Transplant Anniversary!
Today is Day +365. One year ago, this is where we were: Today, Faith is recovered enough to participate in On Belay's Teen...
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...
NG tube out!
Grace has been enjoying walking in the snow and climbing on the plowed parts. On Wednesday, December 11,...
New Green Ember book giveaway
Because he likes to compete with Brandon Sanderson, SD Smith is launching a new Green Ember book today. Our family loves the...
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...
Where is Elbereth?
Last weekend, Heather took all of the girls on a retreat and had a lot of fun together. Those of us at home had a work day at...
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....
Broken fibula
Sometime recently, Grace fell off a wooden block that she was using as a stool. I thought she had twisted her ankle. She would complain...
Central line is out!
Line removal surgery was successful. She did great for the IV. She came out of anesthesia quickly and they were home by 4:30....
Birthday surprise
Grace has had a fun birthday overall, with balloons and presents and blowing out the candles. But tonight, during her...
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...
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...