Daley Ponderings

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)

Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital. She has been doing quite well the last few days and much more cheery.  Nothing like a colonoscopy to cheer you up I guess.  I hadn't been paying... (More)

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)

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)

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)

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)

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)

Grace is not feeling so great today. I approved for them to give her another anti-nausea med in the hope that she will feel like eating. She has mostly only nibbled so far today, though she did eat a reasonable amount of eggs. She is painting right now, but definitely not her cheerful self. (More)

Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update. We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street... (More)

For the most part, these last two days went pretty well.  Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists. Her audiology appointment went pretty well.  The doctor was impressed with... (More)

Someone just asked for advice on Facebook, and I figured I should save it here so I don't need to type it again when someone asks later.   We've had just about every kind of insulation in our house. So, more than you asked for, but hopefully useful. Also, if you don't know about it,... (More)

4/26 - Jeremiah, after his first bowl of non-sugar cereal, asked for some sugar cereal.Only two pieces fell out of the box when I shook it, and he said, "Not two.  I said'some', like this..." holding up several fingers. 4/29 - Jeremiah can tie knots.  He tied the laces of my... (More)

On the evening of March 4th, we were on our way to the church to get our portraits taken for the upcoming new photo directory. It was a bit chilly outside, but I didn't put my hood on because I didn't want to have to fix my hair when we got there. Jeremiah had just woken up from a nap so I... (More)

3/23 - I told Jeremiah the toaster was hot, and he held up his hand, palm facing, but not touching, and said, "hah". 3/25 - Jeremiah was whining about something, and Noah, to cheer him up, said, "Why cry, my pygmy fly?"  It made me laugh anyway! 3/26 - JPD definitely says "hi" now,... (More)

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)