I believe I said Nakie Baby can’t be trusted?

Apparently, neither can Clothed Baby.

Our little ladybug had an adventure today! Gran was with BabyBug because Mama had an appointment. Not half an hour after Mama left, Mama (that’s me, in case you weren’t sure) received a phone call from Gran. “Lisa! Emergency! Leah pulled out her g-tube! What do I do?” Oh, BabyBug. This makes the first time she has actually physically pulled it out herself as opposed to it getting stuck on something – and it has been a very long time since that happened. Definitely the first occurrence of 2014. Leah’s surgical nurse practitioner was kind enough to see her on short notice, so Gran and BabyBug took a little field trip. Good times.

In other news, Leah had speech therapy the other day, and the cutest little 4-year-old girl became totally enamored with her in the waiting room. So they came over to sit by us, and the other mommy and I chatted while the kiddo giggled nonstop at how funny and cute our little bug is. And for Leah’s part, she did not take her eyes off of this little girl the whole time we were chatting. She was fascinated. I’m pretty sure she was trying to figure out whether this was a very large baby or a very tiny grown-up. She hasn’t spent a lot of time around other kiddos. It was pretty adorable.

During our visit, Leah’s speech pathologist assessed her for non-swallowing speech services and found that she does qualify for speech therapy, so she is going to set some goals. Leah is so expressive that I think sometimes people don’t see her receptive language issues until we really point them out (which is funny, because from what I’ve been reading, in older kids with T21, it’s usually the other way around!). She doesn’t respond to sounds by looking for them or even responding to them, at least not until the source gets into her line of sight. I don’t think it is her hearing, though of course I could be wrong. She will be assessed again in the near future, I’m sure. I think that she learned to tune things out during her nearly 7 months in ICU, and now needs to be taught how to attend to sounds that are important. When Mandy came home the other day, she talked to Leah from the other room before she came into the living room, and Leah had no reaction – until she saw her Mommy, and then she was pleased as punch. Hopefully this is something we can work on.

I can’t remember if I already posted this, but at Leah’s GI appointment, the doc said he could feel her liver. He is going to run some tests next week when they do the next dilation, but didn’t seem too concerned.

Oh, one more thing: we are TRYING to have Leah sleep in her own room tonight. This will be a first. Wish us luck. I think it’s harder on us than it is on her.

4 thoughts on “I believe I said Nakie Baby can’t be trusted?

  1. Good luck with sleeping, it should become easier each day, especially when you have the monitor going on high so you can attend to any issue. Totally jumping on a flight in the am for DC, but am sending love hugs and kisses to the whole family!


    • It makes me nervous because sometimes I wake up in the middle of the night and don’t like how she is breathing, and I get up to check on her and discover that she has pulled off the oxygen cannula. So I like being able to hear her. It’s harder to hear her breathing on the monitor. She did well her first night, though!

  2. I think your theory about Leah tuning things out sounds pretty reasonable. All the ambient noise in a hospital setting would be so much input for tiny people if they tried to process it all.

    Josie is TRANSFIXED by older kids, too, especially if they are crawling/walking. She stares at them like “TELL ME YOUR SECRETS”. Mobility is a powerful lure to someone who is stuck where they are put!

    Best wishes on separating your sleep spaces. It’s been a struggle for us, and we have less to consider than you do.

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