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She got her own badge. We got the news that we can leave! Exploring the apartment. Playing with...
joyful, 19 March 2024 |
Home away from home
Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go...
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...
Discharged!
We left the hospital at 5pm today and are "home" at our new apartment and working out this phase. Lots of meds to organize and...
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...
Discharge?
The doctors started talking about discharge last Friday and that continued on Monday. They decided to turn off the continuous...
Family Weekend
We've had some full days since our last post, so I'll try to catch you all up. On Friday night, Jon and the girls went to Camp...
Day +30
Grace has been steadily improving. She is not throwing up as much, she's had a few messy diapers that look more normal than...
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...
Faith is 15 1/2!
Day +26
We have lots of good news to report. Grace has been improving the last couple of days. Her abdomen measured 53.5 cm, the...
Hospital Helper?
Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who...
A step better
From Jon "[Yesterday's ultrasound] didn't report too much that we didn't already know. There was a little fluid in her abdomen on...
New Room
In addition to the drain being installed yesterday, yesterday was moving day. They have all patients move every month to allow for...
Engraftment, Drainage, and God Answers
The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was...
Liver problems and more pain
Noah did a good job driving in terrible Boston traffic, but it meant we got home late and I didn't get to talk to Jon for very long last...
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...
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...
Quick Update Day +15
Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a...
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we...
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date. Click here (or see below) for instructions to...
Good moments, Bad moments
Jon wrote today: When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments"....
Day 9 a bit better
Grace had a fever overnight so Saturday morning they gave her Tylenol. She seemed a bit better, happier. She even gave me some smiles....
Tough days
Grace has been in pain and sleeping a lot. These are the hardest days when her counts are low before Faith's cells take hold. I've...
NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the...