The surgeon's medical assistant sent us an appointment for surgery. I left them a message that the non-surgical interventions seemed to be working. The lump is now about the size of a pea or chickpea.
The surgery was cancelled. You may return to your regular programming. The program "SPING" crashed. Rebooting Spring. This action may require additional action.
See you on the flip side!
Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Wednesday, March 26, 2014
Tuesday, March 18, 2014
Chapter 4: slogging through 46 days in the desert
A sweet friend from high school has a tumblr project for Lent, and pointed out, in a recent post, that Lent is 46 days. You get back to 40 by skipping the Sundays. It's so much like the 40 weeks of pregnancy. Everyone calls it 9 months, but it's really more like 10. Everyone uses the smaller number to make you feel better. It just makes the whole business seem an eternity.
So with Bo's cheek. It seems like this lump has been there, worrying us all, for eternity. In reality, it's been a month. AND, it's getting noticeably smaller. WOOT!
I can't recall if I mentioned it already, I've worked 10-12 hour days the last week, so if you're trying to message or call me and I'm ignoring you, it's because my phone drowned. Revelation: the only thing I miss about it is messaging and bluetooth headphones/music. But connectivity is a must for Mr. Bo, in the case of untoward events.
So with Bo's cheek. It seems like this lump has been there, worrying us all, for eternity. In reality, it's been a month. AND, it's getting noticeably smaller. WOOT!
I can't recall if I mentioned it already, I've worked 10-12 hour days the last week, so if you're trying to message or call me and I'm ignoring you, it's because my phone drowned. Revelation: the only thing I miss about it is messaging and bluetooth headphones/music. But connectivity is a must for Mr. Bo, in the case of untoward events.
Wednesday, March 12, 2014
Chapter 3: spring forward
The ENT gave us a surgery mitigation plan that has a slim chance of working: aggressively pursue feeding therapy (ie oral stimulation program) to get higher rates of saliva flowing, take a course of antibiotics to get the plugged ducts less plugged, and encourage less mouth-breathing.
So far, the results are good! The lump in his face definitely feels smaller, praise the LORD! And he seems to be in higher spirits. Although we spent bedtime looking at his junior human anatomy book, per his request, discussing facial anatomy and what we think is going on with his face.
In other happier news: there are no longer frost-bite warnings, Bo's glasses came in and they look great (he wears them ~60% of the time at school), he's finally outgrown his 4Ts and some of his 5T clothes, and his bone scan shows age appropriate density (this is REALLY good).
Our long-time infusion pharmacy was acquired by Walgreens and the transition has been only "OK." The next shipment needs to be perfect, or I will unleash the screaming rage I've felt about this neverending winter on their pharmacist manager, completely unrepentantly. I'm thisclose to doing so.
I dropped my phone in the (clean) toilet. Looks like I bricked it. I can still retrieve my vm's, but I have to go through the web-widget and I'm lazy, so it might be a while.
Happy LENT, all!
Friday, March 7, 2014
chapter 2...
The ENT was so in love with the kids, she took pictures of their big cheesy smiles before getting down to nitty gritty. Who knew she'd be obsessed with the batmobile and Ahn would waltz in with her batman T and cape!
The good news is that, "it's not some scary, weird cancer." I love to be able to quote a surgeon in words that give so much relief and make total sense. The bad news is that Bo may be facing surgery to remove his adenoids. Tho, anyone in the know, will know that this is about as quick and routine a surgery as they come. It's the '70's version of our new millenial ear-tubes surgery.
As I was putting him to bed, we went over the clinic visit and the very probable surgery. Bo got a little misty, which I found perplexing, although not quite as strange as his not having followed every word of the clinic visit. For a guy who has memorized every word of every book he has ever read, and who spends so much time eavesdropping on my conversations, he pretty much zoned out at an appointment that was both FOR and ABOUT him. Sigh. Thanks, 6-year-old-obsessed-with-fart-jokes brain.
So we talked about some basic facial anatomy, about the brevity of the procedure (it helped that we've read "What do people do all day" a zillion times, because I was able to reference the pages where the rabbit family goes to the hospital and the bunny gets her tonsils out- which aren't the same as adenoids, but close enough to satisfy Mr. Bo), and about how his sister has stinky feet. That got some big laughs. Then I turned off the light, Ahn fell on her head and cried, and everyone went to bed.
The end (:
The good news is that, "it's not some scary, weird cancer." I love to be able to quote a surgeon in words that give so much relief and make total sense. The bad news is that Bo may be facing surgery to remove his adenoids. Tho, anyone in the know, will know that this is about as quick and routine a surgery as they come. It's the '70's version of our new millenial ear-tubes surgery.
As I was putting him to bed, we went over the clinic visit and the very probable surgery. Bo got a little misty, which I found perplexing, although not quite as strange as his not having followed every word of the clinic visit. For a guy who has memorized every word of every book he has ever read, and who spends so much time eavesdropping on my conversations, he pretty much zoned out at an appointment that was both FOR and ABOUT him. Sigh. Thanks, 6-year-old-obsessed-with-fart-jokes brain.
So we talked about some basic facial anatomy, about the brevity of the procedure (it helped that we've read "What do people do all day" a zillion times, because I was able to reference the pages where the rabbit family goes to the hospital and the bunny gets her tonsils out- which aren't the same as adenoids, but close enough to satisfy Mr. Bo), and about how his sister has stinky feet. That got some big laughs. Then I turned off the light, Ahn fell on her head and cried, and everyone went to bed.
The end (:
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