"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, November 24, 2011

OUT--And DECISIONS

I'm happy to report that I finally have access to a fully functional computer again that I can use for blogging, not just my IPAD. And guess why that is?! Kaya got OUT of the hospital--in time to eat Thanksgiving Dinner with us at The Children's House! It was a good dinner--prepared by caring volunteers who came in early this a.m. and made a full course Thanksgiving Meal!

I am really weary, and also feel like I'm still processing a lot of information and emotions. And praying already for guidance for the decisions that are ahead of us and the Doctors.

In a nutshell, it looks like Katya will probably be having cranial reconstruction surgery. Possibly fairly soon. However, I have been told several different things from several different Doctors, and Paul and I have some serious questions to ask Dr. Carson due to that, before we give the final go-ahead for this very risky surgery. We feel that if we are going to say, "Yes-put our Daughter's life at risk!"  we need to have a clear understanding of exactly what is going on. And since we were told by one Dr. that she needed surgery due to  high inter-cranial levels, and then were told by another that her levels were "all in the normal range" and she doesn't need surgery . . . WELL! You can see why we want some clarification here. I cross checked the "no surgery" Dr. on the ICP levels and what he said Katya's were fit with my own personal observations on her monitor. So I'm a bit confused, and for my own peace of mind, I need that clear understanding. Paul wants it too.

Whatever happens to Katya if we decide to go ahead with surgery, we HAVE to know that we made the best and wisest possible decision for her, based on all the info and understanding we have currently. So we are asking for prayers for wisdom for us and for Dr Carson.
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On a very, very happy note, Katya was a model ICU patient, and we clearly saw God's hand in how extremely well she did! Everyone was pleasantly shocked and pleased!!! I hope to blog more about that later!

Wednesday, November 23, 2011

Katya playing doctor


Katya is doing well, so it's possbile she may be moved out of ICU tomorrow...either out of the hospital completely or to a regular room.

Morning Report

Mrs. Dueck (who is still suffering from the after effects of the flu) traded off with Mr. Dueck last night and Mr. Dueck spent the night in the hospital with Katya. Katya slept very well, and then woke up smiling and giggling. We (Amy and Kristina) got to Skype iwth Mr. Dueck this morning and saw Katya...she smiled wide when she saw Kristina on the screen and waved and signed I Love You twice! Mrs. Dueck will be going to trade off with Mr. Dueck sometime this morning, so please pray for both of them as they are still fighting off the sickness!!
Also continue to pray for Katya...she has been doing very well, not pulling out any wires or cords and staying very calm without sedation. Pray for this to continue over the next 3 days.

Tuesday, November 22, 2011

Katya's Surgery

This is from Amy.

Here are the updates in chronological order off of Facebook...

3 hours ago:
Katya in surgery. Pray!

2 1/2 hours ago:
Katya out of surgery. ICP monitor placed. Team working with her. We have not been allowed to see her yet. Pray for her as she wakes up.

1 hour ago:
Katya considered stable and relatively alert now. No Internet acess in PICU except in waiting area. So prob last update for awhile. She is currently playing with a Dora book that she can make play music and ate most of a popsicle. Paul is with her so I can get food and update, then he will leave to get food and a 30 min nap, then pick up other kiddoes who are at the C family about 20 min away from here. Thank u all for praying! I sure have seen them being answered with Katya being so peaceful even the nurses commented on how calmly she let them put her to sleep!

Here are pictures...

Waking Up

Looking at books and pictures in bed

Saturday, November 19, 2011

Hi, Ho, Ho--to Baltimore We Go

Katya is to meet with Dr. Carson the afternoon of Monday, the 21st. She will then need to be at Johns Hopkins Hospital at 5:30 a.m. on the 22 for pre-surgery prep. Surgery to place the ICP monitor is expected to start around 7:30 a.m.

Katya will then be in the Pediatric Intensive Care Unit (PICU) until the morning of the 25th, pending no complications.

Please be in prayer for our sweetie, and for our family. It has been very hard for everyone to be split apart in multiple directions when we were looking forward to celebrating our first Thanksgiving together as a family of 7.

In addition, I have been sick for the whole last week (I think too much stress and too little sleep) and am actually still in fact, sick, though much better than I was. I could use some prayers that I would have my health and energy back as we are going to be having a really long week with very little sleep ahead of us. There are no beds or even recliners in the PICU rooms--only a straight hospital chair--and since Katya is very, very dependent on Mommy for her security and interpreting her needs, it's going to be a long, long, week. I will need God's strength to get through it even if I'm well!

Please pray that Katya will be able to feel calm and peaceful in the midst of so much that is scary for her that she doesn't understand. Pray for Dr. Carson for wisdom and for technical perfection as he does Katya's surgery. Pray for clear guidance about the next steps for Katya's health care after this monitoring.

Please feel free to follow along on the Facebook Group, "Bringing Katya Home" (link on right hand side of blog) as I am more likely to post updates on FB than to be blogging, due to time constraints.

This last week has been a really challenging one for our family in so many, many ways. Someone shared the song, "God Says You're Gonna Make It" on their FB and I listened to it. I had never heard it before, but it totally spoke to my heart and blessed me. The words keep looping around in my head ever since.

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The last few days we've seen God's promises coming true:
#1. God opened up the door so we can take along Chad who really needed to be with his parents, using close friends of Katya and Kristina's music teacher to be His hands and feet to our family  . . .
#2. I was praying about the financial impact that this trip is having on our family. Today God provided the EXACT (to the dollar!) money we need to pay for the lodging while we are there  ($20.00 a night which is VERY reasonable, but still adds up to a chunk that we needed to pray about since Paul has had so little work this fall) AND $100 from a completely different direction that was a big surprise to us,  which will help a lot with the gas! It blesses me to see God's provisions for Katya and our family!

Praise Him with me!! He is so good--all the time!!

Wednesday, November 9, 2011

Then, and Now

This was taken at the airport, the night we returned from Ukraine. Katya was so skinny she was all bones, and very hard to hang on to. By the time this photo was taken, she was already looking some better than when we took her out of the orphanage. But she was still so very skinny that she could draw her legs completely up to her face because she had no body fat to stop her from doing it. Now, she can't do that--her tiny little tummy prevents!


Now, 4 months later, we delight in the fact that she has gone from wearing size 3T clothes (yes, you read that right--3T--and those bagged on her!) to size 5 and 6! The dress she has on below is a size six, and the tights are size 5/6!! Katya's hair has gotten thicker, longer, and glossier. Her fingernails now clip instead of tearing limply. The extra fuzz all over her body is diminishing, and she has eyebrows now and thick, long lashes. Just check out the photo that my friend, Lisa S, took of Katya with her teacher  when Lisa went as a "Substitute" Grandparent on Grandparent's Day at School!



Then, Katya had NO method of communication except for screaming--LOUDLY--for every thing. She didn't have any method of communication for something even as basic a human need as tolieting! She had no way to ask for a drink, or for food, let alone specific foods.

Now, 4 months later, Katya can and does sign, "Toliet, Hungry, Thirsty, Want, More, Owie, I Love You, Bananna, Stop, Yes, No," and a few other things. What an amazing difference that small ability to communicate has made for her! Someone recently commented to me that she was a lot like a "feral child" initially. I have to agree that there was some truth to that. But no longer! Katya knows now she is loved, and will come and press her forehead close to our mouths now to indicate she wants a kiss. She loves her nightly routine of being rocked by Mom before going to bed, and will run for her favorite afghan and bring it to the chair when she sees me heading there. Katya also is learning to write her letters and numbers at school, and can and does make some verbal letter sounds. Last night, she even combined "S" and "T" to make the "SSSTTT" sound!

Prior to entering our family, Katya really had no one making sure that she got the medical care she needed. Now, she has us. We fight hard for her and are taking her to professionals who are in tune with caring for Katya in all ways--not only physically, but also caring about what is best for her emotionally as she continues to try to adjust to life in America.

The results of Katya's MRI of her spine and brain are back in. Katya's spine is normal. There is nothing visible on the MRI that would account for the change in her gait. Her MRI shows her skull to be very vascular, meaning that her cranial reconstruction would be very risky. Dr. Carson is wanting us to come to Johns Hopkins again to meet with us, examine Katya, and then admit her to the hospital for inter-cranial pressure monitoring (ICP monitoring). Katya will be in the ICU there for 2 to 4 days. I can't imagine trying to keep her down in an ICU bed for ONE day, let alone 2 to 4, and anyone who knows her well can't either. What a challenge, and not a funy one, in this Mommy's opinion. However, after talking to others and listening to Dr. Carson's reasoning, we believe that we are doing the right thing; the logical thing.

But yeah . . . we could do with some prayers again . . . I know I'm always begging for that it seems, but we sure do appreciate them!! All kind comments are appreciated too! ;-)

Saturday, November 5, 2011

"Wares by Cherry"

Charity has now started her own blog in order to show-case and sell the items she crafts and sews. Please hop on over to it http://waresbycherry.wordpress.com/ and leave her a kind comment if you can! ;-) Feel free to shop as well! Bookmark it or follow it, because that is where her hand-crafted and sewn items will be from now on.

I hope to post an update and photos of Katya later this weekend if I can get a few more minutes to do so.