Daley Ponderings

Well, it's been a couple of months since we posted an update. We're thankful for this break from medical appointments. With the dry weather, Grace's skin has really broken out. It gets dry and itchy, and then she scratches so hard that she makes herself bleed, and gives herself welts. So our... (More)

Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth.  I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say.  Her skin is very dry and she has rashes in places, and also the dryness is itchy so she... (More)

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 year, and we are thankful.  Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies... (More)

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. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be... (More)

Today is day +133. (Jon updated this post) Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she... (More)

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)

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 means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (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)

As of April 8th, we will be home and the information in this post is out of date.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 visit or send us mail. Hospital Mailing Address Grace Daley, 6 West Boston Children's 300 Longwood Ave Boston, MA 02115 Hospital Visiting... (More)

T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)

Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too. We have five different heating sources for our home, and someday we'll get a sixth... 1a. Oil burner base board radiators. I grew up with base board radiators and I... (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)

I am posting my backlog of pocket notes. Sometimes details are sparse. 2/1 - Jonathan, "Even Einstein didn't have a triple-digit IQ." Noah, "Isn't that the guy with screws in his ears?" Jonathan, "No, that's Frankenstein." Noah is losing teeth all the time, I have trouble keeping track... (More)

Or: How This Mom Started Playing Minecraft They say that a good way to show love is to take an interset in what the other person is interested in, even if you wouldn't care about it on your own. I'm a busy mom and wife of an entrepreneur, right?  I don't have time for video games.... (More)

On Saturday, March 26th, Jonathan, Faith, Joy and I participated in our first karate tournament. The whole family rose bright and early so we could drive the two hours and 15 minutes to Standish, Maine.  This tournament is relatively small, with only about five dojos participating.... (More)