Daley Ponderings

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)

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)

Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.) Prayers for this week: Praises: We got a... (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)

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)

Here are the brief notes I put together about our family vacation to Baltimore.  This year, the entire Daley clan was able to come (Barbara, Phil, and all their children and grandchildren!) Thursday drive down very good, even through NYC, thanks to google traffic. Looked up heights and... (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)

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)

Here's the beginning of the list. It is enough for me just to type it all, so I am not going to categorize or alphabetize. Christ in Christmas, A Family Advent Celebration by Dobson, Swindoll, Boice, Sproul word finds, sudoku, crossword books How Many Snails? A counting book The Rhyme... (More)

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)

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)

Having a dad in the fire department is educational in more than just fire safety: 5/17 - Jon is called to an accident "involving motor vehicle vs. moose" 5/18 - Jonathan reads about moose and siberian tigers on wikipedia ~5 - Joy says "owee here" = outta here 5/20 - jpd 17 lb on our... (More)

9/19 - Joy  has been telling me when she needs a new diaper (patting her bottom) but this day, she got out the changing pad and wipes, set up the pad on the bathroom floor, put a new diaper on top of the wipes box, lay down on the pad, and called for me. 9/20 - Noah is definitely our... (More)

Grandma, whose time is quite full with two grandchildren, is still itching for a blog post about the others, so here it is. I found an old piece of paper witih some notes on it and just searched our blog - I did already post it and it was from 2008! Ok, here we go: 12/22/2011 - Faith,... (More)