Unique is the New Normal: Hodgepodge

Sunday, January 12, 2014

Hodgepodge

A couple tidbits for those of you following:

Annabelle's next surgery, to correct her imperforate anus, has been scheduled for February 13. Happy Valentine's Day, indeed! The surgeons will move the opening where the poop comes out from just behind the vagina to the typical location, in the crack (is there a more polite term for that part of our anatomy? Hmmm.), where there is already a ring of muscle waiting to do its job. We will be in the hospital from the twelfth through the weekend at least. I'm not looking forward to the time in the hospital, but it will be nice to have this surgery taken care of.

Last night was episode one of Hilarious G-Tube Hi-jinks, starring Ellen, Keegan, and Annabelle. Annabelle's button popped out of her stomach with a bizarre squelching sound while we were eating dinner. I sent Keegan upstairs with a smirk, thinking that the wet spot on Annabelle's onesie was a diaper blowout, only to be called upstairs myself a few minutes later by a nervous Keegan staring at the hole in Annabelle's belly in horror. I ran around like a crazy person getting our emergency button and filling up the balloon that holds the button in place, and soon Annabelle was good as new. The old button's balloon had a tiny leak, so it failed to keep the button in place. Hope that doesn't happen again any time soon!

Speaking of hilarity, Annabelle found a new favorite toy at Grandma and Papa's house. We couldn't figure out why she was giggling until Sophie started twisting and twisting a plastic key to make a rattly sound. Annabelle just couldn't control herself. I can't get enough of her laughter. Hope you can't either, since this is the third version I've posted here.

You might notice that Grandma and Papa's house in this video looks different than the home you know and love. That's because they moved to Williamsburg this week! Hooray! I can't begin to describe how much fun it's been to have them as neighbors so far. And it will only get better as everyone gets settled in.

Here's to another week with plenty more laughter and no more g-tube incidents!

1 comment:

chrissyJanuary 14, 2014 at 5:26 PM
We love the laugh! It is amazing how much Annabelle grows every time you post. :)
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About Annabelle's Genetic Disorder

Annabelle has what is called an unbalanced translocation. That means that material (i.e. genes) from two chromosomes has gotten switched, and some material has been lost and duplicated in the process. In Annabelle's case, she is missing some material from chromosome 21 and has some extra material on chromosome 4. Because the material on chromosome 21 is mostly "junk," it is unlikely to affect Annabelle's development. But the duplication of the entire short arm (called the p arm) of chromosome 4 will have some effects. For that reason, her diagnosis is that she has Trisomy 4p, even though the full picture is more complicated than that. Trisomy means an extra copy of material. There should be two copies of each chromosome, so an extra copy makes three, thus the "tri-". Down's syndrome is also a trisomy, because people with Down's syndrome have an extra copy of the entire chromosome 21. Trisomy 4p is associated with developmental delays, learning disorders, and respiratory and joint problems. I've also learned through a wonderful trisomy 4p group on Facebook that it is associated with wonderful, wild thick hair and an adorable snubby 4p nose.