Shared Quote… “Imagine if every church became a place where everyone is safe, but no one is comfortable. Imagine if every church became a place where we told one another the truth. We might just create sanctuary.” — Rachel Held Evans
Integrated projects. I turned my first Capstone Case Study in on Sunday. I was talking to my instructor on Wednesday while she was grading them and she told me I had done very well.
My response: “By your standards or mine?”
She laughed. (I had gotten 109.5 out of 110, which is excellent by her standards while I was bugged by the 0.5 point I had lost.) She created an optional discussion post where we could post part of our case study (in this case, a flier for a yurt tour) and it has been fascinating to see what people put together for it.
Mea culpa, Lord. Sleep deprivation and stress have led to me feeling like I was going to have a panic attack multiple times this week. On Wednesday, I came home after my tutoring shift and did noon prayer (about 2 1/2 hours late) which was helpful. I also felt like the Spirit was reminding me that I need to pray about things a lot more often. (Admittedly, my prayer life sucks right now.)
God speaking to me through music. One of the way God breaks through the armadillo shell I seem to have around my soul these days is music. Unapologetically Episcopalian shared this piece on their Facebook page on Wednesday afternoon and it was needed.
Update on the kid. Because I am a slacker mom, I forgot to schedule my beastling for a weight check today (it *IS* technically Friday). If I can’t get him in briefly at our pediatrician up here, I’ll just stick him on a scale at home and see if he’s gaining appropriately.
He’s drinking his gazazzapop (“gazazzapop” being a word my grandpa used for a liquid without a name) willingly and I can’t wait until summer when we can space it out over the course of a day, rather than having to fit three boxes in between when he gets home from school and when he goes to sleep.
Music take #2.Loreena McKennitt’s newest album came out this month and it is excellent. I’ve listened to it while working on homework and we listened to it on the way down to Seattle Children’s yesterday.
Background on yesterday. Since getting hooked up with the Autism Center at Seattle Children’s Hospital last year, we’ve been able to get referrals to specialists at Seattle Children’s outpatient clinics and one of those is gastroenterology. Long story short, the gastroenterologist we saw was concerned about Daniel’s weight and when he lost a pound between appointments (possibly due to solving a constipation problem), she had kittens. We already had an appointment with the gastroenterology department’s nutrition staff for last Friday, so she ordered bloodwork to go with it.
We went down there last Friday (the 18th), got blood taken (OMG… THEIR PHLEBOTOMY TEAM IS AWESOME!!!!), and met with a wonderful nutritionist… who gave us a week to get kiddo up to 2000 calories per day (at least) or we would be talking about a feeding tube. They gave us samples of a couple different calorie-dense formulas and Daniel chose to bulk up with four boxes a day of this one after we tried him on all of them. (He wouldn’t touch Pediasure at all, even the chocolate flavor.) We’ve also been giving him extra peanut butter and adding heavy whipping cream to his milk.
So about yesterday… We had an 8:30 appointment with Seattle Children’s yesterday morning (which meant leaving at 6:30 a.m. because traffic from where we live north of Seattle to the hospital in the U District is hideous) and they were good with his weight gain. We see them again in two weeks and I’ll be scheduling a weight check with his doctor this coming week to check in with her about all of this.
I also get to chase a referral for feeding therapy. Woohoo.
For those who will inevitably ask if all of this could have been prevented… The answer is “we don’t know”. One thing we probably should have done is the high-risk infant screening through Benefis when he was six months old. The problem: Jon was about to lose his parish in Montana and we were traveling all over the place trying to find another call for him. We were also 2 hours from Great Falls and would have had a heck of a time doing feeding therapy there, depending on how often we had to be down there because of our work schedules and having to share a car.
Another problem: we’ve moved 5 times since he was born and have had to start over with the acquiring of specialists each time. We’re staying put long-term so we should hopefully be able to nip this in the bud right now.
For those wondering what is causing this… Preemies, particularly those who have had to be on ventilators, are notorious for having texture issues. Add in sensory issues from autism and you have a fun situation.
I am wearing… jammies. Church clothes were my little black dress with a green denim jacket over it and black flats. Other clothes were jeans, a charcoal-colored t-shirt, and flip-flops any time I left the house.
Shared Quote… “You stand with the least likely to succeed until success is succeeded by something more valuable: kinship. You stand with the belligerent, the surly, and the badly behaved until bad behavior is recognized for the language it is: the vocabulary of the deeply wounded and of those whose burdens are more than they can bear.” — Greg Boyle, S.J.
A moment from my day… My first Mother’s Day nap in the NICU