Unique is the New Normal: Home Again!

Saturday, November 16, 2013

Home Again!

We left the hospital this afternoon around 1:00. Annabelle has been sleepy and content as long as she has a steady dose of Tylenol. I think she is still sore, but she is a trooper. Thank goodness for a Grandma willing to snuggle for hours so that Keegan and I could spend some time with Sophie, who didn't want either of us out of arm's reach all afternoon. Annabelle is having her first overnight tube feeding at home: so far so good. Tomorrow is our first try back on our normal schedule with tube use thrown in. Wish us luck!

2 comments:

Rachel MurrayNovember 17, 2013 at 7:21 PM
I hope today went well for you at home. It sounds like Annabelle has been an absolute champ! Enjoy those nighttime tube feeds. It's definitely one of the perks of a feeding tube :)
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chrissyNovember 24, 2013 at 7:30 PM
Am really glad to read about Anabelle's successful surgery! I've been out of the loop and just catching up tonight. =) We are thinking about you lots these days and wishing you some rest and good snuggles (with everyone!). I think that junk food is well-justified and have been enjoying my weakness lately...chocolate cake, mozzarella sticks, and queso dip with tortilla chips. Love you!
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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.