Oh hai Facebook – you wanted a giraffe?

Okay, a real update TOMORROW, I swearz! But I had to share this picture – totally appropriate, right?

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Oh hai Facebook! Here’s your giraffe!

BTW, “the door” is the only acceptable answer.

We are going to enjoy our Halloween tomorrow and put surgery out of our heads until Friday! (A likely story! It will be on our minds at every minute. But it was worth a shot, right?) We are looking forward to playing dress up with the Bug (ma nishtana, right?) and will definitely share pics in the evening. Rumor has it there may be a therapy dog costume parade. This completely needs to happen.

Good times.

Leah’s surgery is in 8 days.

The general consensus is that the weight of 4.94 kg was a fluke. She’s more like 4.84 kg.

It is always fun when you hear “Code Red” announced for your floor. The rumor is that it was a drill, but don’t you think that’s the kind of thing you’d want to warn people about ahead of time? ‘Cause let’s be real – “Code Red” is not so deeply encoded that people don’t know exactly what it means.

Tick tock tick tock

Leah’s surgery is 9 days away.

Pretty much everybody knows her surgery is coming up. As we walk into the unit, nurses greet us with, “Hey, the big day is getting closer!” Even the security guards know her surgery day is almost here. It makes for a lot of pressure to keep a lot of people updated, but at the same time, it is So Freaking Amazing that so many people care about how this sweet baby is doing.

And on that note, here is what happened today: I posted LeahBug’s GoFundMe link on the Kids With Down Syndrome page in the hope that a few people might see it and share it. The folks who run the page removed the donation link and posted only the photo of Leah along with my request that people keep us in their thoughts as November 1 approaches. What resulted was nothing short of breathtaking. More than 6,000 people “liked” the picture, over 600 people left sweet comments and prayers for Leah’s health and recovery, and over 300 people shared the picture on their own walls. A small piece of our fundraising effort led to something even more valuable – that’s 6,000 people who will send out a positive thought or prayer to Leah in the coming weeks. And if they don’t, that’s still 6,000 people who took a second out of their day today to express support for Leah as she marches (or scoots, really) toward surgery. Can you ask for more than that?

Also on the horizon: A photographer friend of a friend has graciously offered to donate a photo session prior to Leah’s surgery, and an awesome Mama blogger with a pretty amazing following on Facebook contacted me on Instagram and wants to do a blog entry about LeahBug. So cool. So grateful.

And on that note: We wore our pre-costume costume today. I guess we could call her a LadyBug Larva, but that doesn’t sound very cute.

Enjoy some humiliated baby!

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“Please say there’s no hat. Please say there’s no hat.”

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“There’s a hat.”

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BabyBug has bangs!

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And she has antennae!

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They’ve been using a clear tape on her chin lately. I love that little chin!!!

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Antennae!

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Of course, it wouldn’t be a dress-up day without a pissed-off Angry Babyface.

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I know it’s blurry but she looks so adorably distraught that I had to share anyway.

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But Aunti Staci is magical and fixed it right up.

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“Oh hai, Mama! Aunti Staci is comfy!”

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“So comfy!”

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Snuggle snuggle snuggle!

A bunch of random.

Leah’s surgery is in ten days, if you pretend that today is still yesterday (seeing as how it’s 2:18AM).

Question of the day: If we were to have shirts made up for Team LeahBug, who among you might be interested in purchasing one?

Things that happened today:

– Leah weighed in at 4.94 kg. Allegedly. That’s 10 lbs, 14.25 oz. This is a pretty huge leap from her last weight, which was only a couple of days ago, so I’m going to go ahead and guess that it might be a tiny bit off. But we’ll take it while it lasts.

– Leah’s meal allotment was increased from 85 to 90 cc. She’s a growing girl!

– Leah had a bath and did not wind up with wild hair. Where did we go wrong?

– I had a decaf iced caramel macchiato from Starbucks (thank you, Gran!). It was glorious. I must not have another any time soon. Whew. That is way too much caffeine and sugar for somebody who has been living on broth, baby food and mashed ‘taters. Way way.

– This afternoon I went back to Ronald McDonald House to do laundry. Roughly 5 minutes after I started three different loads of laundry… the power went out on the whole block. Thankfully it was only out for half an hour. Still. Not cool. Curiously, the other Ronald McDonald House building (there are two) did not lose power. Apparently the dividing line for the electrical grid is right between the two buildings.

– Somehow I managed to whack my forehead on a washing machine. Don’t ask. It still hurts, but I think my dignity took the brunt of the impact.

– BabyBug’s Halloween costume is now washed and ready to wear. This outfit is going to require Yom Kippur levels of atonement and forgiveness. But I have faith that someday Leah will recognize that this costume needed to happen.

– I definitely do not have 63 GB of photos and videos of our child. *whistles and looks around*

That’s about it.

No, wait.

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Thank you to Sharon A. for the adorable ladybug blanket!!

NOW that’s about it. 🙂

Crunch crunch crunch

This might be repetitive (based on my prior entry with the Facebook post embedded) and is mostly for my own reference, but I still thought it was kind of awe-inducing, so I wanted to throw it out there.

The bottom line is that depending on which statistics you use, each year only 2 to 5 children in the US are born with Leah’s condition (Down Syndrome and Type A esophageal atresia).

I gathered a bunch of numbers:

  • Incidence of Down Syndrome in the United States: Approximately 1 in 691
  • Incidence of TEF/EA among individuals with Down Syndrome: 0.5% to 1%
  • Percent of TEF/EA cases that are Type A (long-gap, no TEF): 7% to 8%
  • Children born in US: 3,952,937 in 2012

    Then, I mushed them all together (using 2012 birth statistics and assuming that kids with Down Syndrome and TEF/EA are no more or less likely to have Type A):

  • Estimated number of children born with Down Syndrome: 5,721
  • Estimated number of children born with both Down Syndrome and TEF/EA: About 29 (at 0.05%) to 57 (at 1%)
  • Estimated number of children born with both Down Syndrome and Type A TEF/EA: About 2 (at 7% Type A and 0.05% of kids with DS) to 5 (at 8% Type A and 1% of kids with DS)
  • Estimated number of children born with both Down Syndrome and Type A TEF/EA and two mommies: Um. Leah.

    116

  • Videos for you!

    Stuff I forgot to mention yesterday:

    Lately BabyBug is OBSESSED with this little jingly fly that has black and white wings and hangs from her vibrating throne. She will sit there for minutes at a time and stare at it, and occasionally give it a little bat with her hand, not unlike a lazy kitten. It’s pretty freaking adorable, especially since she hasn’t really been reaching for stuff very often.

    One of the most awesome things Leah has experienced so far: Her Cool Auntie Erin (technically her cousin, but shhhhh) brought her ukulele and played her a song. Leah spent probably 2/3 of the song fidgeting and looking around the room, but I’d say the 1/3 of the song in which she was staring adoringly at Erin was worth all the fidgeting. Here’s a little snippet:

    This has also been Fashion Week @ the BabyBug Room. We have been dressing her up in some pretty ridiculous pieces from her fab fab wardrobe, most of which is pieced together from a combination of baby shower gifts and outgrown outfits from Leah’s slightly-older friends, whose Mamas who have some pretty amazing taste in babyclothes. Leg warmers? For babies? BRILLIANT. You try changing a diaper when a kid is wearing not just pants but also what seems like yards of cable and wire and tubing. And she’s at her bare minimum right now! Remember when she also had the vent and the PICC line and the g-tube that was actually a tube? OMG. So yeah. Leg warmers, fab. And yes, also jeans, fab. Sweet little sleepers, fab. Adorable empire shirts that could just as easily pass for dresses? Fab. Thank you so much to everybody who has contributed to The Little Fashionista’s imminent future in footie couture. Seriously, though, you Mamas have been really, really amazing and we are very grateful for the clothes. Even aside from the obvious giant savings in baby clothes (which is Totally Necessary right now), it has brought us a lot of happiness to put Leah in Big-Girl outfits. We have control over so little right now that it’s a big deal to get to pick out her ensemble each morning and her footie jammies each night. So thanks for making that possible.

    That being said… I take full credit (credit, blame, you decide) for the two most recent dresses, and am terribly pleased with myself at the fact that the two dresses together were less than $10 (and Gran bought one of them!).

    So. These videos purport to have some purpose (e.g. to show off visual tracking or use of developmental toys to encourage grasping), but really? Really? It’s about the outfits.

    (Of course, I do think it’s pretty cool that Leah is tracking the camera. I realize she’s probably just tracking me, but it’s still cute. Maybe she sees the little blinking light.)

    My little Stinkerbell

    Yeah – that’s what I call her when she prepares a beautiful diaper for us.

    At this moment, she’s a Stinkerbell for another reason. I recently purchased this “Oatmilk Calendula” organic baby lotion for the Tiny Tot because her skin is super-sensitive and we want only natural products used on her skin.

    Well. I can’t decide whether my child smells like a dreadlocked hippie or a 60-year-old man, but either way, suffice it to say that the next time I purchase baby lotion, its scent will have a more descriptive title than “Oatmilk Calendula.” Something along the lines of “Hey, This Is Scented Purely With Lavender Oil.”