"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Sunday, January 13, 2013

Hitting the Road Again

Last night, we discovered that Katya has a swollen, painful lump on the top of her head just up in front of her scar from surgery. The lump is about 1.5 inches in diameter, and about 3/8 inches high. It is painful for her. I had noticed earlier in the week that she was jerking away and gently pushing the brush away when I would try to brush her hair in the mornings.

I had (wrongly) assumed that it was a new stage or phase in her development--similar to how she would allow us to put several items of food on her plate at a time before she began eating when she first came home, and then would polish her plate clean. Now? She only wants ONE item of food on her plate at a time, and screeches MOST unhappily if we attempt to put even two on--even if they are at opposite sides of the plate--and she also leaves prodigious amounts of food on her plate and thinks she is "done eating"! These are changes that clearly show Katya has been able to develop more healthy emotions about food--she also feels the ability to make some choices about how her plate is handled. She no longer feels powerless, and afraid that we will starve her. So good things.

It's easy to see how we assumed that the hair brushing was a "new phase" in her development for a few days. However, when she was eager and signing "Yes! Yes!" she wanted to go with her Daddy to run an errand yesterday early evening, and then ran and cried and shook her whole body, "No! No!" when I said OK, I would need to brush her hair first, you can easily see why I said, "Hmmm." And Charity said, "Hmm." And things started to click together and we began to gently feel her head.

What a sick feeling in my stomach when I realized . . . .

Per a previous discussion with Dr. Dorafshar after Katya had those several episodes of facial swelling, we did not rush her off to the local Children's Hospital and spend the night sitting up becoming more and more ragged, only to turn around and need to head to Baltimore. Instead, we spent the night in our own house, and are now packing and planning to head out to Baltimore. Katya will be seen tomorrow AM by SOMEONE at JHH (hopefully Dr. Dorafshar is in town . . . ) and I guess we will see what happens. I expect that there is a very good chance she will be hospitalized, but we will see.

Pray for our sweet Katya, and our family, as we head into the unknown . . . .  And if you wish to keep up with what is going on, I'm guessing the best way to do so is probably by following our blog AND Charity's blog.

1 comment:

Milena said...

I hope that Dr. Dorafshar is in to see Katya and I hope for necessary insight for him(her?) concerning how to best help Katya. And I also hope for strength and peace of mind for you!!