Music take #1. This song came on randomly while I was doing my Word II homework in one of the computer labs on Tuesday.
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.
A song for this weekend:
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.
My current ear worm. Enjoy y’all!
For more Quick Takes, visit Kelly at This Ain’t The Lyceum.