Ever since we took Miss Courtney of the Depakote almost six weeks ago now, she has slowly but surely “woken up”. Not only have her seizures lessened dramatically but she has found her voice once more.
She is making new noises, singing at the TOP of her lungs most days, as well as discovering she can hold her own hands, swing her legs freely anytime she wants and she smooshes together he lips all the time.
It is awesome to watch her discover her body and what she can do with it. It is a blessing, even though I believe I may be going deaf, to hear her voice no matter what the volume.
The biggest change though has been in her sleep patterns. As in she doesn’t have any. She sleeps when she sleeps and she doesn’t when she has no desire too. It matters not what schedule I try to enforce with her, so far she is not interested at all. It’s like newbabydom all over again and this Mama needs a nap.
Hell, I need about 2, 345 naps to even come close to feeling rested.
See here’s the deal, we put her to bed at the same time every evening. Sometimes she goes to sleep, sometimes three hours later I walk in to hear her singing to herself and looking like this:
Legs crossed and swinging, hands flying through the air, eyes wide awake, humming and humming and occasionally calling out into the wilderness to see if anyone will come and play with her.
You’re probably asking “Can’t you just sleep through it?”
Not really. This Mama is trained to awaken at the slightest groan or grunt thinking it may be a seizure, so sleeping through it isn’t going to happen anytime soon. So I just listen and pray and if she gets really loud I go in and sing to her for a bit before re-tucking her in and trying again allowing Mr. Sandman to come and work his magic. Someitmes that works and sometimes not.
Yep…doesn’t this say “Hey Mom I am so going to sleep tonight.”…ummm…nope…not so much. I mean, she looks really sleepy at midnight or three a.m. right???
Again…not so much. Mama on the other hand looks like the walking dead and no there is no Instagram photo of that…I do have my pride you know.
So this afternoon after about three hours of sleep total for the night, one massive seizure at 6 a.m. and one hour of intense physical therapy at GUH with the incomparable Miss Pam, Courtney was just done for.
She did so well. She stood independently (leaning on Mama) for the first time in almost THREE years. It was so awesome to watch her work so hard. By the time I put her back into her wheelchair, she was zonked. She snored all the way home, with her leg crossed.
Is she still asleep now at 6:14 p.m.
That would be a ginormous NO! It’s dinnertime after all. My girl never misses a meal…she takes after her Papa that way (wink, wink).
As for Mama…ZZZzzzzZZZzzz…ummm what’s that??? ZZZzzzzZZZZzzzzz
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