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

Dr. Ben Carson on Katya Dueck

Tuesday, February 28, 2012

Surgery

Last night, we received our surgery date for Katya's cranial reconstruction. March 21st.

I have to admit that there are a LOT of mixed emotions with this. Some relief, some fear , ALOT of fear, a sense of peace down under the fear, resignation, determination, hope like a little flicker (hope that just maybe she will be able to learn to speak after the surgery! ? ! ), feeling sad that she's going to lose her beautiful hair for awhile when I know that her hair and wearing pretty hair things is important to her, feeling sad just because my baby is going to be going through so much without really understanding it and so many other things. Feeling the fear of the unknown--because no one knows how Katya will come out of this. Yes, we hope for the best--we pray for the best--but reality is NO ONE but God knows how Katya's brain and body will come through this surgery.

Being separated from my other children again feels hard to me too. There's concern about the costs coming on the heels of a long fall and winter with almost no work for Paul.

I am also concerned about being gone from Todd during his week of college finals when he really should have a little extra support and help from us, esp. as this is his first time to go through finals.

Yes, lots of mixed emotions. But I know beyond a shadow of doubt that God led us directly to Dr. Carson. I know God has His hand over Katya, and I know He knows exactly how all the details of all this are going to work out. Just like we had to choose to trust God and His purposes again and again up to this point, I know we will have to keep choosing to trust . . . As much as we love Katya, I know God loves her even more. I know God also loves and cares about our other children, and He will be with them while they are separated from us.

In the midst of trying to keep up with all we need to do on a regular basis PLUS with the extra things to be ready for surgery (paperwork, pre-op exams/labs, phone calls etc.), we also need to try to figure out how to prepare Katya for something that is so hard to communicate with the limited knowledge she has, as well as the language limitations. We are focusing on drawing up a list of important ASL signs that could be useful for Katya to know such as: Doctor, Nurse, Medicine, IPad, and so on. We will work on teaching her those signs ahead of time. And of course there is a request already for a Russian interpreter for her (hoping we can get the same kind gentleman we had last time! He was such a blessing!).

Above all, we will count on the prayers of Katya's friends . . . I know God is able to speak peace to her heart above and beyond what we can do.

5 comments:

Willow said...

Deep prayers that all will go well, better than you dream-- hugs and blessings on you all!

love,

Jer

Milena said...

Hoping for peace of mind for all of you and for a blessed outcome of the surgery for Katya!!

jabreman said...

Hope Ann-

Much love to you from California. I will be praying for all of you in the months to come...

I would think about preparing a very, very simple book for Katya about the surgery, with very simple pictures (even stick figures will do) that you can read to her about what her experience will be like. I would start reading it to her the week before the surgery and make sure it includes the AFTER...what she will GET THROUGH... (there will be tubes, you will feel better, what her day will be like post recovery in the hospital, who will be with her, etc)

We make these for our kids at any critical time/change/transition and they love them. Plus, they are the star of the books which they like.

Hope that helps. It sounds like she is in excellent hands (God's, yours, Dr. Carson's) and is blessed to have such a loving family!

Love,

Jane
a reader/mom in California

Hope Anne said...

Hi, Jane! Yes! We have already been exchanging emails with Katya's speech teacher as she will use a program the school has to make a simple book to explain to her what is going to happen, and why. After we approve it, she will laminate the pages and spiral bind it so it's easy to read to her again and again, and easy to take along to John's Hopkins for her to look at while in the hospital. We will emphasis again and again that Mommy and Daddy will take her HOME when she gets well enough etc. (We have been warned to expect approximately a one week ICU stay.) Thank you for all the support and kind words. ;-)

Willow and Milena, your kind comments and prayers are much appreciated!

Sylvia MiaSara Truewell said...

Oh goodness, how frightening and exciting, all at once.

I pray for everyone -- quick healing for Katya, peace for her and all who love her during the frightening surgery and healing process.

Now, are they going to be fixing everything at once? I know she has the depression in her skull over the Broca's region. I know that kids with her condition also (usually) have the bones of their mid-face pulled forward to help the eyes sit deeper in the skull. Is she having the top of her head fixed and her face? Or will they be doing multiple operations?

I also wanted to comment on the photo in the previous post. She looks so beautiful and happy! What a cutie pie.
Best to all of you!
Truewell