Daley Ponderings

hi mom/mommy/"mahmeemahmeemum" dad ball "bahw" dog "dah-dah" (she used that word for a cat yesterday also) bellybutton "bah-bee" bottle "baba" no wow bop (as in noses) baby hat/head "at" hot "ah" whee! happy up, (please) "uppy"... (More)

Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)

The test is done and we are back home.  Nothing too eventful to report.  Our regular physican's assistant did the biopsy, so got to talk to him a little bit, and he is going to research one question that we aren't sure about regarding what 97% chimerism test means. He did say false... (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, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)

I've been meaning to write an update; I've even gotten started on one (labelled day +90: it's now day +97.) Overall, things have been going well, Grace's numbers coming back satisfactorily. But then she got a cold.  Just runny nose and sneezing.  But after her nap, she had a mild... (More)

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)

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)

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". This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't... (More)

My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)

I switched to Capital One after being with Citibank for years (decades, actually).  Citibank started a poor security practice of sending you a text message that says "never share this with anyone", and then they ask you to repeat that code over the phone (even after authenticating me with... (More)

I am posting my backlog of pocket notes. Sometimes details are sparse. 8/9 - JPD, "The last name of my yellow shirt is 'Egg'." (Full name is 'Scrambled Egg') 8/10 - JPD, "Joy is my buddy." (Joy gone with Grammy.) 8/12 - Talking with a townsperson. He said, "I met a family that was... (More)

I am posting my backlog of pocket notes. Sometimes details are sparse. more (sign too) = "moh", also means "I want that" Mom ow bang/bonk yum signs please uh-oh ball door oh hot come = "mum", usually repeated, with hand signal whoa no hand plug broke(n) = "boke" milk,... (More)

I typed up my memorial service reflection for a presentation we did at our church recently.  I don't think it has been typed up before, so I thought I'd post it now.  (Am I allowed to be amazed at myself?) Heather's memorial reflection, March 16, 2003 Isaac Christopher Daley - a... (More)

4/3 - I said to Jeremiah, "Your shoes are on the wrong feet, sweetie."  He replied, "I not 'sweetie'.  Joy is 'sweetie'." 4/10 - Joy and I spent a grueling but satisfactory three hours earning our yellow and orange belts, respectively. 4/14 - Jeremiah, "It will be so so so fun if... (More)