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

Dr. Ben Carson on Katya Dueck

Thursday, October 3, 2013

A 180 Degree Spin Part 2

Tuesday morning found Katya in a fine mood.



We fixed ourselves breakfast of eggs and yogurt, and then loaded up our water bottles, paper work and snacks, and set out for the new Charlotte Bloomberg Children's Center at John's Hopkins. This was Katya's first experience receiving any services or care there--it was not quite open yet when she was last needing services at Johns Hopkins. Light, airy, and cheery, we were happy to get to experience the improvements for Katya's CT scan.

The waiting area was roomy, and cheerful.


Katya tired of the toy and then moved on to the books.


I had to think about how it was when Katya first came home--she would grab a book, hold it any old which way, flip through the pages rapidly and then pitch it. She had no idea how to hold a book, how to look at it from front to back. or how to treat it gently.

So much has changed! And in addition to all the afore mentioned points, Katya now will run her finger along the lines of type from left to right, studying them for words she recognizes.

And have you been noticing the back pack?? Yes, Katya's responsibility for her possessions that started in April has continued to be firmly intact!

In fact, when they finally called her back for the scan, Katya climbed promptly up on the CT Scan table as soon as she saw it, clutching her back pack. When the tech attempted to position the back pack lower on her body than where she was holding it, Katya clutched it firmly and gave most unhappy screeches! No one is to try to take her back pack or carry it for her! She is firmly convinced now it's in her best interests to hold that and hold it she will! Fortunately, when Katya realized we only wanted the back pack to be held lower on her body, and no one was taking it from her, she calmed down and was amenable.

The CT scan was done very close to her scheduled appointment time, so when it was done we had plenty of time to head to the cafeteria and get some healthy salad and what not for lunch. We took our sweet time to eat, and then headed over to the Neurosurgery clinic where the Cranial-Facial clinic run jointly by Dr Ahn and Dr Amir Dorafshar was being held. 

After we were finally led back to the exam room, Katya settled herself on the table and raided her back pack for entertainment. Paul, Charity and I soon began to develop the increasingly wonky sense of humor that we develop when jammed in a waiting room. Charity thinks it's due to oxygen deprivation from so many of us in one small room. I don't know for sure what triggers it, but we end up getting funnier and funnier to ourselves the longer we wait, and this time we totally outdid ourselves and were howling finally with laughter.

We were in a fine mood when the knock came on the door, and Dr D. swept into the room, accompanied by his PA, Megan, and Dr Ahn. Dr D. was very nattily dressed--clear to the navy tie with pink flowers he was wearing. And he was **The Man** as Charity put it. Dr Ahn towered over Dr D. but Dr. D. was front and center, and doing about all the talking and most of the feeling of Katya's head. Dr Ahn hung back, and was quiet and mostly just agreed with anything Dr D. said.

After taking a brief update on Katya's history, and looking at her head carefully, Dr D. spun us in a 180 degree circle. He said that things were happening with Katya that they never would have anticipated--that her forehead had actually improved some (part of it used to be much more "flat" than it currently is) and the back of her head growing quite significantly the last 6 weeks was also not something they would have ever expected in April.  He also went on to say that the CT scan showed that Katya's body had begun absorbing some of her skull bone, leaving it thinner than anticipated, and too fragile to work safely with right now. They said that they don't know why this absorption of bone happens sometimes, and they don't know what to do to stop it, so for right now, they wanted to hold off on surgery, "unless you tell us that you don't like how your daughter looks, and then we will do it." We went round and round verbally, trying to understand what exactly were their thought processes. Every so often we would get told again, "You would need to be the one to say you don't like how your daughter looks."

Well, thank you very much, I think that given what she has gone through, she looks great and I'm not going to say that! When they kept bandying the words "elective surgery" around, I finally said, "Well then that means we never need to do surgery on Katya, right?!" Their eyes widened--especially the Neurosurgeon's, and their response was, "Oh no! It NEEDS to be done. Just not right now."

Needless to say, by the time we were done with this confusing conversation, we felt like we had been spun a full 180 degrees, and didn't quite know what hit us. We were thankful that all three of us were present in the room and able to hear for themselves what was going on.

I truly felt like I'd just been placed as the end person in a game of "Crack the Whip" and was being jerked first one way, and then the other. Charity was so stunned and attempting to concentrate so hard on what exactly was going on that she never even got any photos! And we could have gotten a really nice one had she been able to capture Dr Ahn sitting on the exam table and bending his head down to watch Katya as she was rapidly putting together her "Connect" pieces, and then writing letters.

We suspect that some legal "posterior coverage" was going on, because it was clear that they were concerned about Katya's "soft spots" being a risk factor to her, and yet were evidently sure that the risk of letting them go right now was less than the risk of attempting surgery.

So the upshot of every thing is that we agreed to NOT ask for surgery, which seemed to make them happy, and we will follow up again in six months. I know neither Charity nor I were having peace about the idea of surgery--and neither did a lot of others--so I feel like this was God's clear answer to us even though it came in a really strange manner.

In the meantime, Katya is still on all kinds of head precautions, including no contact sports! Good thing she doesn't want to play football, huh?! And as to the bone loss--we are not accepting that there is "nothing to be done except watch and hope it stops". We are going to do our own due diligence, talk with some of Katya's other Doctors, and also reach out to someone in the adoption community that knows a thing or two about bone density loss, and get their input. I know their child had some type of special infusions to help with her situation--so I'm thinking there are answers and hope for Katya SOME WHERE.

When we finally got out of the appointment, we quickly went over to the Children's House, packed and cleaned up our little apartment area, and then set out for home.

We drove steadily except a quick stop for supper and the bathroom, and thus arrived home soon after midnight.

Now we are still left to process what happened in that meeting, and while we are extremely thankful that surgery has been pulled from the table FOR NOW, it leaves us hanging in the air having NO idea when surgery will happen . . . or how to plan our lives . . . this had seemed like good timing in some ways and we had cleared our schedules, lined up baby sitting etc. NOW we have no clue when Katya might have surgery, so we are left in a strange limbo.

It's not exactly a pleasant place to be, but I'm confident GOD is watching over us and has this.

Thank you for praying for our family . . . .


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