Her speech therapist has confirmed that she is swallowing a lot, it just doesn’t seem to be working. This could be Moebius, or partly the way her tongue is being held in place. The doctors are waiting for the buttons to come off her tongue tomorrow. Then she will have more movement at the back of her mouth and may be able to swallow better.
You know when you’re getting to the end of a cold and you have this lingering tickly cough that keeps you from getting to sleep at night, so although you aren’t sick, you’re exhausted and feel terrible? That’s how I think Emma feels right now. She’s very tired but when she dozes off her throat gets blocked and she has to cough.
I have spent several hours today trying to get her to sleep and she only seems to be comfortable when you’re not! We tried the swing, the vibrating chair, her mobile, laying on me and none put her to sleep. (Yes, we tried each for some time, to let it work!)
Eventually the nurse and I decided to give her a bath as a last ditch attempt. I had been hesitant all day as she did not like the sponge baths I’d seen her get. But this time it was for real!! The tub in these pictures is no bigger than 12x8”!!
She LOVED it! She did not squirm, cry or complain! She especially loved the warm water pouring over her head. I can see she is going to be a water baby.
We can only hope and pray that the doctors are able to find a solution tomorrow if freeing her tongue doesn’t help. (That is freeing the back, the tip will remain adhered to the lip.) Until then, we can only hope and pray she can get some sleep (and stop burning so many valuable calories!!).
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