Daley Ponderings

23 years ago, we started this blog to have a good way to keep everyone informed of how things were going. In some ways, it really does feel like a lifetime ago.  However, Isaac is still close in our hearts.  His life and death are a part of our family and influence our relationships to... (More)

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)

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 on and off, but still often insist on walking. Then Sunday, Noah came to me and asked, "Did you know that Grace's foot is crooked?" So we decided it was time... (More)

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)

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)

We were so relieved and happy to have Jon and Grace with us for Family Camp. Daley summer life has been super full as usual.  Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)... (More)

Screenshot of a video call on Thursday:  Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the... (More)

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)

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)

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)

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)

I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)

I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)

The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)

The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic... (More)