Sunday is a day of rest; and so today we kept things pretty quiet and rested.
We started with a pretty solid 7 hours of sleep (for her, not for me)! It’s pretty tough having been asleep for two weeks, and then waking up in a place where there is lights and noise at all times. But Amber finally fell off to sleep about midnight, and slept through till 7 AM with only one interruption about 4 AM to reposition her.
After a morning visitor and sponge bath, Amber took a short nap. Then early this afternoon, we turned off the last of her primary sedative (Fentanyl), reducing her to a much lower dose of an alternative, which is delivered as part of her feeding. This means that all IV medications are done, and they removed her “central line”. No more IV, everything just delivered via feeding tube! It is beautiful to see all that hardware removed – all that’s left is the feeding tube and a spare IV line in the ankle “just in case”.
Then Amber got to sit upright in her chair for about an hour and a half. We looked out the window for a bit, watched some Minecraft videos on the tablet, and read a Princess Jasmine (Disney’s Aladdin) story. And after all this activity, she is taking another short nap.
I had a good conversation with Dr. Paul, one of the neurosurgeons. From that first day she woke where she was giving us thumbs-up and finger snaps, we’ve noticed her slow down significantly, so I asked about that. He assures me that this is not unexpected – her head pressures are good (evidenced by the positive visible depression in her head where the skull flap is removed, which would be swollen and puffy otherwise) so there is no indication of problem. So he believes the lack of activity recently is just a result of her dealing with the exhaustion of breathing on her own and moving around more.
Of course, I trust Dr. Paul, he knows better than I do, and he has been straight with us throughout. I trust God too, that He will continue to do what is best for Amber, and that He will enable the medical staff here to provide the best possible care for her. But as Amber’s Dad … it’s incredibly difficult to watch my little girl go through this, unable to really communicate, unable to fully comprehend, unable to move much of her body or even swallow properly, unable to focus her vision.
And so I pray that God gives us the strength to do whatever we need to do for Amber, and to accept His will, whatever that may be.
Amber's Way 
so good to here she’s doing better. Im sending Amber a book about the super hero girl you guys talked about. i’ll give it to Marie tommorow.
💜
Matt,
Sorry to read about your heartache today, But Like Dr Paul said that coming off all the sedatives has to be exhausting. But as a parent seeing less activity is worrisome. You just want that spunky, active, dancing Amber. I can’t even beginning to image the millions of thoughts that run threw yours and Caron’s heads every minute of everyday.
I am happy to hear Amber is doing well even if exhausted. We’ll continue to take those small baby steps forward anyway we can. Get some rest. Love you guys.