Whenever I have to fill out information for Sadie and it asks what her strengths are, I always say communication. Even though she can't talk.
We've been in a REALLY good bedtime routine. About 8:00, Sadie eats and gets some milk in her tummy, then we give her a little bit of Ativan (just enough to settle her brain and her spasticity) around 8:20 or 8:30. Then by 9:00 she's in bed. And I don't mean like I'm in bed with her patting her to sleep. I mean, I take her in there, lay her down on her side, plug her in, put the covers over her and kiss her goodnight.
And then we don't hear from her or see her again until morning.
This has been going on for over 2 weeks now and it's amazing. It's been so nice to have multiple good nights of sleep, and Sadie wakes up happy too!
But last night, we changed it up just a tiny bit. We went to the mall to pick out some new glasses for me, and we didn't get home until after 8:30. So, we decided to give her the last of the blended food we had in the fridge just through her tube to save time. Sometimes when we tube feed Sadie she gets more air in her tummy and has more of a tendency to puke a little up...especially if we lay her down not too long after giving it to her, so normally we don't do this before bed. But, it was a different kind of night.
So, we did this, gave her her medicine, got her in bed by 9:15ish, and everything seemed fine. But around 9:30 she started screaming. Little screams at first, then it got louder and louder until I couldn't ignore it. She was obviously trying to get someone's attention. So, I went in there to see what she needed.
Turns out she had made herself tense and pushed stomach contents out through her tube (this isn't uncommon when her stomach tenses up), then that counteracted with the feeding pump pushing water INTO her tube. And it resulted in popping the top off of the medicine port. (If you're not familiar, there are two places on her extension to put in whatever we're giving her, there is the main port, then a smaller one on the side for medicine. Both just have a rubber stopper.) She wasn't, therefore, getting any water, and her stomach contents were also now leaking onto her bed along with the water that was being pumped in.
Once I noticed that this had happened, I fixed the problem, tucked her back in, patted her half a dozen times, kissed her, and said goodnight again.
And I didn't hear from her again until morning.
Now I don't know about you, but this to me is excellent communication. Even though she wasn't able to say, "Mommy, my tube is broken, come fix it!" Essentially that is what she was saying. She got my attention, got me in there, got the problem solved, and was then able to sleep.
It just shows that she is aware of what's going on and what needs to happen.
Such a big girl.