I was sitting on the couch and was watching something on the Apple TV that has ended. I’m now ignoring it and it has moved to a screen saver; flashing pictures on the screen. And every once in a while it flashes one of these:
And I find it difficult to move on emotionally from where that sends me.
It was a really tough time. I felt frantic, exhausted, frustrated… desperate.
Maisie was in such pain. She was spitting up almost everything that we fed her. She was so sick. When I think about what could have happened… it makes me sick inside.
And yet… That’s when she started to smile for the first time.
And she kept smiling. Even when her lips cracked.
And she is soooo smiley now.
The scarring is mostly gone now. She has small marks on her left jawline that are still to fade, her bottom is still scarred, I’m not sure if it will ever completely disappear (but it is an area that will be completely covered by her bikini). Her fingers are completely healed, her hair is growing back in… Actually, her hair is what has changed the most. About a month or so after the diagnosis, I noticed that there seemed to be something shiny in her black hair. Upon close inspection, the shiny turned out to be about 1/4 inch of hair that had gone gray. That would be the growth in the time period where she was the sickest. The growth since the gray is very curly. So the ends are straight, the middle is gray and the bottom (close to the head) is wild and crazy. Her hair is quite striking really. I love it. It seems to be saying “You can’t keep ME down!” – Just like her…
There is one spot where I think she will have a permanent scar. It is the middle of her lower lip. It had cracked very severly and did not heal for a long time. You can definitely still see a scar.
Maisie is happy and giggling now, starting to roll and starting to sit up. She has a screech that can pierce ear drums (we’re working on that) and a smile that pulls people from across the street to come and talk to her.
Maisie is now off of the supplemental zinc. It’s been 4 weeks now and, while Alan and I are a bit gun shy, she seems to be doing well. She is now within a healthy range (she was high for the whole time that we were supplementing her). We are going to continue to monitor her zinc levels to ensure that they do not continue a downward spiral. The doctor feels confident that she is out of the woods, but we would like a few more points of reference. Maisie is also on solids where she will be getting zinc daily. I’ve started feeding her meat much earlier that I probably would have because zinc is higher in meat. She’s enjoying solids a lot! She eats pretty much everything I give her and then still wants to nurse afterwards.
And the best thing… She’s sleeping soooo much better – which means… So am I!
We are happy once again.
If you would like to read about it all over again: