Unique is the New Normal: Happy Valentine's Day

Friday, February 14, 2014

Happy Valentine's Day

Happy first Valentine's Day, Annabelle!

We managed to have a nice Valentine's Day despite being in the hospital. In the morning we were able to start feeding Annabelle by mouth again, and she drank Pedialyte with a very thirsty fervor. Nana and Granddude took us out to lunch at the Strawberry Street Cafe while Annabelle slept and played with her nurse.

In the afternoon, the pediatric ward had a Valentine's Day party, and a caricature artist was doing pictures. I had him draw Sophie and Annabelle - what fun!

Dr. Lanning came by to visit and said everything looks wonderful - if Annabelle continues to do well with her feeds, we may be able to go home tomorrow or Sunday, which would be great!

During the evening nap, Keegan and I went to Bottom's Up pizza, which is the only destination for Valentine's dinner when your daughter has just had surgery on her bottom!

I have the best Valentine around.

Annabelle seems to be feeling much better today and was even up for some playtime with her plastic keys before bed. I love that little smile!

I have the TWO best Valentines around. Plus another sweetie at home!

2 comments:

EmilyFebruary 15, 2014 at 7:26 AM
Oh, I'm so glad she's doing so well -- she looks adorable in her little Valentine's Day outfit! I am so sad not to be seeing you, but I (the last holdout of us six) finally came down with the horrible head cold night before last and I don't want to bring you guys any germs. I can't believe you're ten minutes away and I can't see you! I hope you'll get to go home today to your other Valentine! Much love from all of us!
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Rachel MurrayFebruary 15, 2014 at 7:41 PM
Happy Valentines! I am still laughing about Bottoms up! Too funny.
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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.