A week later…

So! I’m terrible – haven’t blogged in a week! What has been going on? Hm. Leah had another dilation on Thursday. She definitely handled this one better. The previous procedure was performed under fluoroscopy, and I think maybe because that takes longer her recovery was a little bit more difficult. The aftermath of this third dilation was more similar to the first one. They were able to stretch the esophagus to 10mm circumference, up from 9mm the week before. They didn’t go any further as it was already a tight stretch. We are taking this next Thursday off, and Leah will have another dilation on March 6. They also replaced her g-tube with a slightly bigger size (still the AMT Mini-One). I got to meet a couple of the AMT reps since they were at the hospital at the same time and the surgical NP introduced us. Could I resist poking fun at the Mini vs. Mic-Key thing? Of course not. But I told them that Leah met both of them and likes Minnie better – so hopefully that made it okay. 🙂 She has definitely handled the Mini One better than she did the Mic-Key button – she had terrible granulation with the Mic-Key. With the newer, larger Mini we’re seeing a little bit of leakage, but hopefully that will subside once she’s adjusted to it.

We also received the results of Leah’s sleep study this past week. Leah does have mild obstructive sleep apnea, as we thought she might. Because she was already on oxygen to address the suspected sleep apnea, the “plan of action” will remain the same: She will stay on 1/4 liter of oxygen at night. Alas, this means we have to keep putting stickers on her sweet little cheekies. We leave them on for a few days at a time so we don’t have to rip them off every morning, but it’s still so sad to see the red circles on her cheeks when we finally do take them off. She does have such darling little cheekies.

We have been trying desperately to keep LeahBug healthy this week, as Mommy, Uncle Ralph and Auntie Jo all have the plague. Or, you know, a cold. So far I have managed to escape, but I’m not taking anything for granted – Emergen-C and Yin Chiao every day for Mama! I’m convinced that our cat Lobo is responsible for the spread of the plague through our house, since he goes into everybody’s room and demands attention. I’m thoroughly neurotic, so I refuse to touch him while people in the house are sick. At least my 18-lb black cat (Jeepers) is a LITTLE more loyal.

The other new development this week: Leah has discovered “blowing raspberries.” Grab the umbrellas!

I’ll catch a raspberry for you soon – but in the mean time, enjoy these videos:

And now, photos!

This kid is ridiculous. For real.



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Smooooooshy face

My kid is beautiful. That’s just all there is to it.

“Um, Gran? Hello Kitty? I don’t know about this…”

A little collage I made for all the new people who liked Leah’s page this past week – nearly 400 in total! A sweet Mama of ADORABLE TWINS with Down Syndrome (like, SO CUTE – you don’t even know. You have to click.) was kind enough to share LeahBug’s link on her boys’ Facebook page, and a whole bunch of people decided to start following the Bug! Yay! More cheerleaders!

Om nom nom, delicious speech therapy tool. (Looks like a toothbrush!)

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Aunti Staci tried very hard to get BabyBug to put the paci in her mouth by herself. Grandpa Bill says it looks like she’s smoking it.

More cute face.

The decline from sadness to sleep in roughly five minutes. She didn’t even cry – just made a ton of those sad pouty faces.

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Close-up on sad pouty face

“This is my SLEEPY CRANKY BABY face.”

I’m not sure what this face is. Caption, please?

Dilation Thursday! She always looks so teeny tiny in the crib when they bring us back to the recovery unit.

Back to sleep on the way home.

“Oh? Don’t stick out my tongue? You mean… like this? How about like this? What about like this?”

This outfit is so freaking cute.

Is there such a thing as happy pouty face?

Sweet bug


Laundry day! This one goes on delicate.

Nakey Baby can’t be trusted not to pull on her g-tube.

What is that face? Silly girl.

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“Here, let me pre-rinse this for you.”

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What a ham. Kosher ham. Kosher honey-baked ham.

7 thoughts on “A week later…

  1. Caption: Toni and Jess postponed our dinner date a whole week! So disappointing!
    Love those videos- have watched them multiple times each! Can’t wait to see/ experience the raspberry!!

  2. Her progress makes my heart lighter. Smacking the xylophone was so cute. Soon tools from Lowes! Your dedication to her physical and mental needs are wonderful. She looks like she’s thriving and happy. And you gotta agree she has the best squeezie cheeks I have ever seen. Keep up the great mommying you both do.

  3. She is so adorable I love the xylophone banging and how much she loves it. All the vidoes and pics are so awesome. I love watching them and seeing all the progress she making. Good for you and Mandy making sure she goes to all her therapy appointments. She will miles ahead when it’s time to hit those milestones.Go Leah Bug you’re a strong little bug. Love you so much Cousin Marilyn

  4. Leah is just so expressive; she should try out a drama class when she’s older!

    Love the videos — I had a xylophone like that when I was a kid, so that video brought back some memories. I showed Josie the GiggleBug video and she laughed back!

    Feel better soon, Mandy! Stay healthy, Lisa and Leah!

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