Search Results: opened

Central line is out!
Line removal surgery was successful. She did great for the IV. She came out of anesthesia quickly and they were home by 4:30. It is strange to her to have her line out. But next week she'll be able to have her first bath in a year! She is excited about that.  After she got... (More)
Posted by joyful on October 25, 2024, 9:40 pm
Category: Grace
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date.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)
Posted by jondaley on February 19, 2024, 1:50 pm
Category: Grace
Catchup the last few days
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)
Posted by joyful on February 7, 2024, 7:51 am
Category: Grace
Some Freedom, Some Nausea
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)
Posted by joyful on February 3, 2024, 5:44 pm
Category: Grace
Isaac Memorial Reflection
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)
Posted by joyful on June 17, 2016, 2:58 pm
Category: Isaac
June 2016 Pocket Notes
6/1 - Nathaniel was playing with the nebulizer, dripped some of the leftover liquid, said, "Uh, oh."  Then he walked to the bathroom, opened the cabinet, got out a hand towel, came back into the bedroom and wiped up his spill. 6/2 - I asked Nathaniel to put the toy cars away and he did... (More)
Posted by joyful on June 17, 2016, 2:47 pm
Category: Jonathan, Noah, Joy, Jeremiah
September and October 2015 Pocket Notes
9/2 - NPD definitely pulling up (on bathtub) - see Mom's post of Maggie P. 9/2 - NPD, "ma-ma-ma" "na-na-na"  JDD is convinced it means "Mom" 9/2 - Joy, "2+3 is 5. [pause] I learned that in bed."  Subsequently also taughtherself other addition facts. 9/2 - Joy making bracelet... (More)
Posted by joyful on February 29, 2016, 8:22 am
Category: Jonathan, Noah, Joy, Jeremiah, Nathaniel
July and August 2015 Pocket Notes
7/6 - Noah is building a paperboard New England village. 7/6 - Jeremiah opened the cupboard under the kitchen sink with the TotLok. He was so proud of himself.  "There we go.  Open!"  (sounds like "deh-do. Opih!") He closed it and opened it several times, each time repeating... (More)
Posted by joyful on February 29, 2016, 8:09 am
Category: Noah, Joy, Jeremiah, Nathaniel
Every Day Is A Good Day
Yesterday was an exhausting day, so I made sure to get us ready for bed early.  We were in bed by 9:00.  But Jeremiah kicked his covers off just about every hour and asked me to put them back on again.  By 3:30 or so, his medicine had worn off and he was wheezing and... (More)
Posted by joyful on April 23, 2015, 9:34 am
Category: General, Jeremiah
Giant List of Pocket Notes
I'm very much behind on the blog.  But I have kept the pocket notes safely typed up in my email.  So here goes. In June, the kids and I made a trip to Florida to visit my parents, and my sister and her kids visited, too. 6/14 - Joy, "Mommy! I saw a dinosaur!"  (It was a... (More)
Posted by joyful on December 22, 2014, 2:04 pm
Category: General, Jonathan, Pregnancy, Noah, Faith, Joy, Jeremiah
Pocket Notes
9/13 - A Friday. Jonathan had been asking me if he could read Harry Potter for a while.  I told him I needed to talk to Daddy about whether we thought he was ready, but I kept forgetting.  The strategy that worked was asking me in Daddy's presence so I didn't have time to forget. ... (More)
Posted by joyful on October 19, 2013, 8:08 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
Faith had a blast at Star Island with Grammy and Papa. 7/25 - JDD, explaining why he likes to use a certain spoon for his breakfast cereal, "That spoon is special to me, because Grammy gave it to me for Christmas last year." 7/28 or 29 - Joy had a cold and I gave her 1 or 2 nebulizer... (More)
Posted by joyful on September 14, 2013, 11:30 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
Joy says "lellow" for yellow, which appears to be her favorite color. 4/24 - Jeremiah figured out his thumb! It's the left one he sucks. Does this mean I'll finally get a left-hander? 4/26 - Sometimes when school runs past noon, Joy decides to get lunch for herself.  Usually, she... (More)
Posted by joyful on May 14, 2013, 5:43 pm
Category: Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
These notes are really old, but not lost. 6/7 - Noah's first lost tooth.  Bottom left front.  It took a very long time for it to come out.  He doesn't play with it at all.. Joy was sitting on the couch.  Faith wanted to do a trick, so we asked Joy to get down.  She... (More)
Posted by joyful on September 9, 2012, 7:47 pm
Category: Jonathan, Noah, Faith, Joy
Lots of Notes
Faith has started calling Jonathan, "Ohnny-int"  This is related to how she says medicine ("meddy-int") and other words that end in /n/. She also says her own name, which sounds unfortunately rather like "Hate" but the /t/ is a bit softer, maybe halfway between that and "Hathe".... (More)
Posted by joyful on April 15, 2011, 9:13 am
Category: Jonathan, Noah, Faith, Joy
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culpable-adaptable