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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

Apartment Life

We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)

Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace

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

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 on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home. Grace was not happy to be stuck in a clinic room. First... (More)

Posted by joyful on March 19, 2024, 6:52 pm
Category: Grace

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 Maranatha for the annual father-daughter retreat and the boys went to Boston to stay in the apartment. We went to Target to get some maternity shirts for Heather... (More)

Posted by jondaley on March 13, 2024, 5:09 am
Category: Grace

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 she's had in months, or even ever. She had an ultrasound which she slept right through. Her drain has not been putting out much, so... (More)

Posted by joyful on March 9, 2024, 10:28 am
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

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 smallest it has been in weeks. They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged. The... (More)

Posted by jondaley on March 5, 2024, 10:54 pm
Category: Grace

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 would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same sushi buffet that some... (More)

Posted by jondaley on March 4, 2024, 10:21 pm
Category: Grace

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 that side, so I wasn't expecting much, but a fair bit came out last night, I think 100 mls in the last three drains. The fluid near her lungs is almost gone.... (More)

Posted by joyful on March 3, 2024, 11:53 am
Category: Grace

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 worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)

Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace

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 night. The ultrasound revealed that Grace definitely has problems with her liver; she has also been in more pain. By the time I talked to them, she was content... (More)

Posted by joyful on February 29, 2024, 6:43 am
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

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 (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think,... (More)

Posted by joyful on February 24, 2024, 4:09 pm
Category: Grace