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Look What I Can do!
Josie accomplished a very cool goal this morning with her OT. All by herself–ok with a lot of guidance and warm-up practice--Josie wrote her name. How cool is that!? And tonight we meet the teacher at...
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First Day of Prek!
My 22q heart baby is all grown up and going to school! The Saturday night before the big day, my dad was giving me a hard time for not having a parent-teacher conference about Josie’s delays. I know he...
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Day of Prayer and Fasting this Saturday, 9-7-13
Oh whoops. Thanks WordPress for not cooperating as always! Well, it works. Posting this on our family blog as well Pope Francis on Syria For more info:...
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Happy 5th Birthday Josie!
I just spent the past 2 hours writing the first half of Josie’s birth story and it’s 6 pages long. I know that’s inhumane to expect anyone to read through that much nonsense. Lots of details that don’t...
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I Sang This to Josie in the NICU, 5 Years Ago
I wasn’t sure she was gonna make it. She was two weeks old the first time I got to hold her again (after she went into shock and heart failure at one day old). So I sang her this song.
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What is 22q11.2 Deletion Syndrome?
Edit: Ack the video didn’t embed the first time I posted. Hope this link works! I thought this was great: Josie’s deletion was de novo. And I’m totally gonna write the rest of her “birth story” soon,...
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I’m bad at responding to comments AND updating apparently…
So since when I logged on to write a quick update about how Josie’s speech is just exploding and I couldn’t be happier so far with the results of her VPI surgery a few months ago, I noticed I have...
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Upcoming Appointments & Worry
Ok I said I’d write the other half of Josie’s “birth story” and left you hanging. Sorry. I’ll deliver in one cathartic push at some point. Right now I’m deep in thought. I was going to say “pregnant...
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Heart Awareness Week!
So I should write a more in-depth update. Things have been crazy ’round here. Josie recently had a cardio, hema, and dental check up and did awesome with all three. No bad news is great news! No...
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22q11.2 Deletion Syndrome, Digeorge, Rare Diseases Day
Happy Rare Disease Day! Though 22q11.2 Deletion Syndrome (Digeorge) is the 2nd most common genetic syndrome (after Down’s) no one seems to know anything about it! For us we’ve learned about cleft...
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