BabyBug Updates and a Photoblast

So! Some medical updates for you:

-I mentioned in an earlier post that Leah has mild obstructive sleep apnea. The ENT reminded me that she also has some central apnea, which occurs when the brain simply doesn’t send adequate signals to breathe. Treatment remains the same, but I want to make sure I’m being accurate since I’m sure I’ll use this blog for reference later on.

-Speaking of the ENT, Leah had a miserable appointment the other day. She had to get her little ears scraped out because she had a lot of wax, and she had her little nose scoped. NO FUN. I know it was much worse for her, but I’m not gonna lie – it was pretty freaking awful having to hold her still while she screamed and sobbed uncontrollably on my lap. They don’t have an exam table in there, so I had to hold her still (with the help of one of the nurses). Her little tears were rolling all the way down to her neck. Poor Bunny. She is due for an audiology test later this month; we’ve had some concerns about her hearing since she is still not responding to noises from sources outside her direct light of sight. I still think it’s more an issue of attentiveness since she was in the ICU for so long and it’s possible she has learned to tune things out, but at the same time it’s important to rule out hearing issues since many kids with Down Syndrome do have ear problems. And you could probably hit a gong behind this kid and she wouldn’t turn around to see what’s up. The doc was only able to see into one ear canal (although this is the first time ANYBODY has been able to see anything at all), and she said Leah’s eardrum activity looks good and she didn’t see fluid. No word on the other ear. Too itty-bitty!

-Our little chunky monkey hit 13.5 lbs today!

-The big update: Leah had a dilation today, and while the last dilation took her esophagus from 9mm to 10mm, this procedure had the doctor re-dilating her from below 5mm back up to 8mm. He doesn’t know exactly how narrow it was, but he knows it was less than 5mm because he couldn’t get the scope through. So we’re essentially back to square one. Her next procedure is scheduled for next Thursday, but the surgeons and the GI will need to confer and decide what they want to do next, because there is not much sense in continuing to do regular dilations if the stricture is just going to tighten again. The GI discussed perhaps injecting steroids into the stricture, but apparently this requires special equipment that may or may not be available at this hospital, particularly before next week. He also discussed the possibility of the surgeons needing to operate on the esophagus again, as well as the potential for a fundoplication, a surgical procedure that curbs reflux. The fundoplication has always been on the table as a possible necessity in the future – it just seems like maybe the future has arrived a little sooner than we thought. But I don’t want to jump the gun – the surgeons and the GI haven’t yet conferred, so all I can do is speculate.

And on that note… smile! It’s picture time!

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Partners in crime.

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“Aunti Staci, you are the master of selfies!”

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Quality Aunti/Buggy time.

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We love toys that make funny sounds.

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Combining new skills (holding) with old ones (nomming).

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Evolution of a raspberry.

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Mommyfingers are the best.

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Glow Seahorse has lost his batteries (due to a refusal by Fisher Price to issue a recall for spontaneously-combusting seahorses), but Buggy doesn’t seem to mind.

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They are still best buds. As long as she can still eat his nose, she’s happy.

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Goofy!

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Grandpa Bill brought his face-toy!

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“Grandpa Bill, I have a tongue! Nyah.”

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“I wonder if I can touch my tongue to my nose! First I have to find my nose!”

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Little troublemaker!

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She gets it for a few seconds at a time, but it’s something!

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Same with tummy time and neck support!

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Oh. Okay. Caption, please.

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“Are you for real with this outfit?”

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Precious innocent babyface.

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Practicing the “whatever” face for her teenage years.

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Cabbage Patch Baby nose.

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Oh, this face!

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Bugs Bunny with Cool Auntie Erin.

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Deep in conversation with Mr. LionBug.

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This faaaaaaace.

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“Cheeeeeese!”

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Look at those little arm rolls!!

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“It’s the funniest thing, Mama – somebody is pulling my hair!”

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“Is it possible for me to be any cuter? What do you think?”

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Yes. Yes, LeahBug. It is.

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A serious moment with Uncle Ralph.

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A less-serious moment with Uncle Ralph.

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More tummy time.

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Our hardworking little LadyBug.

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“Work or noms? Work or noms? I’ll take noms, please.”

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The physical therapist didn’t give her a choice. Work. No noms. So she raspberried instead. THE WHOLE TIME.

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There were, of course, a few moments when she just made silly faces.

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Silly baby, silly grandpa.

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Like Grandpa, like Mama, like BabyBug. All silly.

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That’s a troublemaker face. Oh yes. That’s an “I pulled off my cannula” face right there.

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“FEED ME KRELBOURNE, FEED ME NOW!”

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“Hmm. Mamafingers. Those could be breakfast.”

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Lion feet might be easier to chew.

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This is a disgruntled post-procedure baby. “Mama. Why must you make me wait to eat?” Sorry, Buggy! The nursie made me!

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Sleeping with a handful of cables. Some things just don’t change.

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“Well hello, Uncle Ralph!”

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“Uncle Ralph… what happened to your face toy?”

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Fun with the camera!

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No caption necessary.

7 thoughts on “BabyBug Updates and a Photoblast

  1. Wow, these are some of the most incredible pics of that adorable baby! So glad she seems to be happy most of the time!

  2. I am an old school friend of Jessica Baer. Love the love the 3 of you have. Any chance you can message me your Address /etc so I can send Leah a little something from Gibraltar ( where I am living now )…if an issue, I can send to Jess and she can forward to you . Leah is beyond gorgeous !!! such a naughty smile and look. Love watching her progress.

  3. So awesome seeing the pics of Leah she is so cute love the tounge it’s so funny thanks for the updates I will pray for the surgery thing weather it needs to get done or not. Can’t wait to see her in May for her bday and baby naming party. Woohoo see you soon love cousin Marilyn.

  4. I think I would caption the picture of you and Leah as, ” pssst whatta say we go to Vegas?” Your baby looks like she’s up for any kind of fun! Her pictures warm the heart and she seems to be absolutely thriving being home with her loving moms!!! Thank you for sharing-it’s such a gift!

  5. I love the one where she’s pulling her hair. So sweet.

    Sorry to hear about the awful ENT appointment, and the frustrating dilation developments. Here’s hoping the team comes up with a good plan!

  6. Thx for the awesome photoblast it was very heart warming to see Leah n her many face exressions just loved them all so much……Great family as well….Thx for the update too…..Prayers going up for all 3 of u….

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