Daley Ponderings

Last weekend, Heather took all of the girls on a retreat and had a lot of fun together.  Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church.  Elbereth, Jonathan's snake, was out and various people were holding her and then she was resting on the olympic rings in the kids' bedroom.  Apparently, when we dispersed, no one remembered about Elbereth and so at some point, she must have gotten tired of hanging on and dropped to the floor (probably a four foot drop), and then looked for a nice dark place to hide, which was in Nathaniel's bed!  We didn't notice until today, two days later, because she often hides in her wood shavings, so no one thought much of not seeing her, but Jonathan went to clean the cage and found she was gone.

Faith found Elbereth at the foot of Nathaniel's bed, and Jonathan discovered that she had wedged herself in between the bunk bed and the wall and was unable to go further forward, and snakes aren't capable of going backwards, so she was completely stuck.

We used a crowbar to move the bunk bed (6 beds all connected to each other) a little bit so Jonathan could extract her.  She appears to be fine and none the worse for wear.

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 thankful for from that visit. They are sure that her fracture is from steriod weakening and not NF1. The kind of bone issues that NF1 causes is not evident in her, and it would be by now. Several other NF1 symptoms are also ruled out for the same reason.

But there is still the possibility of developing brain tumors. This is why she is scheduled for eye exams every six months for the rest of her life. They are working on a trial of oral chemo that looks promising. Because there is no sign of brain/retinal tumor in Grace now, that study will be finished before she would even need it. And we pray that she never will! I think they said she'll get a brain scan every year, but they did not do one this time. She had an eye exam in June and will have one next month. And they asked about her cognitive development. The tumors really affect that, so we are reassured by her development there. Jon asked me to look up milestones for three-year-olds and the only things she is behind in are some gross motor skills like jumping/hopping and riding a tricycle. (She tried riding a tricycle the other day, and her legs did not reach the pedals!) I had already planned on taking her to the playground more often, but that now has to wait while her leg finishes helaing. That is on the mend, she does not limp much at all anymore. She still has some flareups occasionally, but the curve is dampening.

Jon and Grace are off to Boston for her bone marrow aspirate. He just spent all day yesterday at the polls, literally, from 6:30am-11pm. And they had to leave at 5:45 this morning. Prayers for alertness while driving. Bless her marrow that it's 100% Faith's. Bless the procedure and anesthesia. Bless our little Amazing Grapey Grace.

Fun quotes from the last weeks:

9/7/24 - Nothing like older brothers to help you develop cognition. When she was in an "answer everything with 'no'" mood: "Grace, are you dumb?"  "No"  "Are you not dumb?"  "Not dumb."

9/11/24 - "Mommy, all done eat my eggs.  Please wash it, my fork."

9/11/24 - "Hope 'wake now. Not sleeping."

10/26/24 - Nathaniel and I were talking about when Grace can shower and bathe now that her central line is out. Grace then exclaimed, "Swim! Me swim! Maggie P! You come. Hope come."

Monday, 11/4/24: The kids were doing a survey for fun.  "What's your first name?" "Grace" "What's your middle initial?" [they helped her say 'Victoria' and that it starts with V] "What's your full name?" "Amazing Grapey Grace!!"