"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, March 31, 2013

Easter Sunday

A year ago, we spent Easter Sunday in Baltimore. Easter was later in the year--not until into April, and Katya had just recently been released from the hospital, but we weren't allowed to leave Baltimore yet. Dr. Carson cleared us to attend church together when we asked if we could do that, and so it was really our first "outing" with Katya post op. We were thankful she was alive, thankful she was out of the hospital, and thankful to be able to go to church together (those of us who were in Baltimore), but we longed for our home and our own church, and most importantly, the rest of our kiddos!

So it was great thanfulness that we went to church together today at our own church, worshipped joyfully,
 and then came home to our own house to eat lunch together!

Charity combed Katya's hair today for church, and while she managed to snag a photo of Katya looking at herself in the mirror, she didn't get any other photos of the kiddos all dressed nicely for church. Too bad. Ah well.


This picture is very special, as less than two years ago, Katya would fight to try to make sure she didn't see herself in a mirror. She would physically block the view with her hands while turning as fast as she could to make sure she did not see any thing of herself. Look carefully, do you see the cute little smile she has in the mirror?!

I'm so glad that as we speak love and truth into her life, her views about herself are changing!




After a yummy lunch of ham, mashed potatoes, mixed veggies, and salad, I crawled wearily into bed for a nap. While I'm getting healthier, I still don't have all my energy back and have to be very careful not to over do.

Happily, when I woke up, I felt energized enough to help the kiddos start working on Mother's Day cards to send out come that time of year.

 
It felt really good to be able to be creative with my hands and brain again with the kiddos. I think we just often enough don't squeeze time in for that type of activity. Hopefully we can do more of it this year. I think it's so good for all of our brains. ;-)

On Friday and Saturday, we took a "Stay-Cation" as Katya was out of school on Spring Break. We had a great time and I think Katya really had fun! Hopefully some photos and blogging will be able to be done about that in the next few days . . .

Tuesday, March 26, 2013

365 Days Ago . . .

Charity blogs about 365 days ago  . . .

Read, and leave her some bloggy comment love.

*********************************************

In other news, I am still slowly recovering from the illness that felled me. I hope and pray to never be this sick again. I also am hoping and praying that my ear drum will heal on it's own, and my hearing will be restored. Mom's need their hearing  . . . My hearing wasn't real good before this happened, but it's utterly lousy now. The only thing is that I "hear" things so poorly that it can be rather entertaining at times . . .so I suppose there is always that to be thankful for. The other thing is that when I stick my one ear that has a bit of remaining hearing down on my pillow, it's awfully quiet and I can sleep  . . .  Of course, as a Mom . . . that can be a bad thing too, and it's sure hard to hear Dh when he talks to me--even if my ear isn't on the pillow. I find myself having to tell my family  again and again, "Please look at me and speak slowly and loudly!"

So yeah, prayers for healing appreciated.

Friday, March 22, 2013

Texas Hash

 
Among my childhood memories, there are not that many memories that stand out well to me of good food and fellowship in detail.

But I have one that I would like to tell you about tonight.

I think I was around 5th grade. School had started for the year, on a warm late summer day in Kentucky. It was traditional to have the first day of school be a slightly shortened day, ending around noon.My parents, and the parents of the family newly moved in next to us, had determined that it would be a good day for the children from the two families to practice our walking skills by hiking literally over the mountain back to our homes. This consisted of a very warm and interesting hike firstly over a portion of a prarie type grass ground that was an old strip mine, as the crickets and grasshoppers chirped and buzzed as we distrubed them,  and then up, up and still higher up into the hill and into the trees. We then followed an old animal trail up and down and around till we at long last (nearly an hour later) descended the steep mountainside through towering pine trees and cow pies from the cows who grazed there. Down, down and down  we went, jubilant at the thought of finally some cold drinks for our parched and sweaty bodies--and FOOD!

We dashed through the barn yard at the bottom of the hill, crossed the bubbling crick, and then stopped at the neighbors house, to drop off our friends, only for them to see a note on the door directing them to head with us up to our house. So, yet again, we walked up another steep hill, landing at last at the door step of the tiny little mountain home we lived in at that time.

There was the new neighbor lady, beaming at her children and at us, and she and my Mom had fixed a tasty feast for us all! I have no memory whatsoever of what else was on the menu that day--being late summer, probably garden things like corn and fresh, juicy slices of tomatoes. But I certainly **DO** remember the good old "Texas Hash" that our neighbor lady had prepared and brought! I thought it was one of the most delicious things I had ever eaten. And I took seconds as I recall.

To this day, Texas Hash is a food that evokes warm and happy memories for me, and even though my children don't have any such specific "first memory" of it, they too find it a comfort food.

Over the years, we have increased the recipe so much that I don't even use the recipe any more, cooking to "look" and "taste", but I shall share the original with you, along with a few things we do.

First of all, the recipe is found in my much-worn Mennonite Community cookbook.

 
 
TEXAS HASH
 
2 large onions
3 T fat
2 Green Peppers, Chopped
1 pound hamburger
2 cups canned tomatoes
1/2 cup uncooked rice
1 Tsp chili powder
1 1/2 salt
1/4 pepper
 
Fry minced onion and green peppers in fat until onions are brown. Add hamburger and fry several minutes. Then add tomatoes, rice, and seasoning. Pour into a large casserole. Cover and bake at 375 F for about 50 minutes. Serves 8.
 
Now, for our changes--we fry the burger, and when it's about 50% fried, we pitch in the onions and green peppers. That means we omit the extra fat. We also prefer canned tomato juice rather than canned tomatoes. We use brown rice and cook a bit longer.
 

We always fill our big blue pan (10.5 by 14 3/4 by 2 and 1/4 inches) and there are rarely any left-overs! We like to serve it with applesauce, and green beans. The flavors all are so good together, we think.

And there you have it--Texas Hash!


Oh--and the other VERY great thing about this dish?? You can make up extra, slid it into a gallon sized freezer bag, flatten it out nicely, freeze on a cookie tray, and then pull out and easily thaw and reheat if you are having a crazy day. It's also good to hand off to a new Mama to pop into her freezer for the day she just absolutely can't find time to fix anything else!

 

Thursday, March 21, 2013

Goody Boxes!

Lately we got two lovely boxes in the mail!

The first one (not pictured) contained two books from Katya's Amazon wish list--"Inside Your Outside--All About the Human Body" and "The Magic School Bus Inside the Human Body". My two youngest were excited! Because while Katya needs these books, Chad also enjoys them! ;-) Thank you, thank you to whoever kindly sent them! There was no name with the package, so I have no clue . . .

The other box came in the mail yesterday. It was a tough day at our house--I was feeling absolutely dizzy and lousy still as I try to recover from having the flu and then a ruptured ear drum, and just the arrival of a package I wasn't expecting put a tiny spark in my day!

We didn't manage to snag a photo while Katya was at home of her with the items, so Charity got one of Chad.

Thank you, Susan in MA for the day brightener! Katya will enjoy these items for a long time, I'm quite sure!

All these goodies are a real blessing as we seek to educate Katya! In order to most effectively help Katya play "catch up" in areas where she is behind, we need specific types of books and videos. Having people bless her with items from her wish list has been a huge surprise, and I hope you know how very thankful we all are!!

Bless you, kind friends!

Wednesday, March 20, 2013

Sweet Sleep

When we first brought Katya out of the orphanage, she could sleep in a very tiny amount of space. She would climb into bed, curl her lanky legs into a tight ball, and go to sleep. Even while sleeping, she would stay in a tight ball, and would waken in the morning, still in a tight ball, and hop out of bed.
 
Having seen the tiny, sagging toddler beds in the gruppa, it was no surprise to us that she slept that way. She had no other way to fit into those beds.
 
But it has been our delight to watch her gradually learning to sleep spread out!
 
 
She nicely takes up a good portion of her bed now, as you can see!
 
We get such pleasure out of seeing how she stretches her body out, flopping freely around in the bed, where ever she feels like going in her sleep!
 
I'm glad her sleep can be sweeter due to a bed that is comfortable, and fits her properly. And I think SHE likes it too, because every single night that she has been home and we have tucked her into bed, she always acts sooo satisfied and pleased when she climbs into her bed. Her bed is clearly a place she feels happy about.
 
There is an organization I have followed and observed for the last 4 years or so, called Sweet Sleep. They provide beds--good, sturdy, clean beds for orphans and other underprivileged children around the world. As part of my on-going desire to promote organizations that are ethical as far as I know and who really care about what is best for the children, I would love to encourage you to check them out and support them as you are able! For some reason, I can not get my internet to work well enough to link you to their site right now, but it is www.sweetsleep.org . What better way to let an orphan child know they are NOT FORGOTTEN than to give them a sturdy, clean and comfortable bed that FITS them, with clean, comfortable bedding?!
 
For the sake of little Katya's all over the world, sleeping crunched up into an inadequate bed, or no bed at all, think about it. Then DO whatever you can to help!
 
 

Sunday, March 17, 2013

Guest Post


Hallo! This is Charity. I'm mother's representative. She's been ill--as ill as I've ever seen her, baring the time she nearly died of a spiderbite because the overconfident green-horn doc insisted she was having kidney failure. (Yes, that was back when our life was dull.)

 
This picture, from an organized album, occurred 8 pages after my second birthday, and 15 pages before my third, so do the math. She hasn't been this sick in 15 years. Please note: her condition  was much improved by the time this picture was taken.
 
I did not take a picture of her this go-round, because there isn't much to see. A ruptured ear-drum and a fever of 107.5 (yes, the thermometer was accurate)  isn't as glamorous as a spider-bite. Too-many darkened rooms and tissues.* Not to mention I've been rather busy, being a gopher. ("Go-for this, go-for that". It's a pun.)  
 
The Friendship-Party did their Easter edition. It's the first party of it's kind I've been to: Katya was quarantined last year, just mere days before her cranial surgery, and only Kristina and Chad went.  Yes, I could've gone anyway;  there are other teens there that I know, but we're there to keep our charges from-- I'm not sure what, exactly, but we're there for a purpose, and jawing isn't it.  
 But Katya wasn't quarantined this year, and so there she is. All dressed up in a wisteria jumper and looking nearly as cute as she ever looks.
 
In many ways the party was as usual-- games, snacks, music-- but as would be expected of an Easter Party, there was an egg hunt. Indoors, due to the drippy weather. If we'd known, we would've put Katya's nice black church shoes on her, in place of the pink ones.
 
 
All the other kids (not pictured) went zipping around from place to place, excitedly gathering eggs. Not Katya. She was excited, but she had method.  She took her bucket, picked a likely looking pew, and "vacuumed" her way down the aisle. 

 
 


"No egg left behind" seemed to be her motto.
She wasn't greedy, though.  Once she had assured herself of having her share of loot, she was content to sit and examine it.
(This is the only sharp picture I got of her. She's always in motion.)
 
Your prayers for health and healing appreciated.
 
* Mum wishes me to inform you that she has been to the doctor, and is on antibiotics, and other drugs.


Saturday, March 9, 2013

Art

When Katya first came home, she did not know how to color. She did not know how to draw--not even a simple stick figure. Nothing. Absolutely NOTHING. She had no motor skills to be able to do anything more than grasp the pen or pencil in her fist and her arms wildly went from one edge of the paper to the other, much as a 6 month old infant might if you handed them a pencil or crayon.

Today, I took a good look at my fridge and laughed. Joyful, joyful, happy, happy laughs. Because, this is what I saw on the front of the fridge.


And the side of the fridge.

 
And the other side of the fridge . . .



As you can see, Katya's drawings and paintings TOTALLY fill my fridge--in layers . . . all placed there by her--because she knows we like to stick her important art work on the fridge.

And look how cute her drawings are!!

 

Awfully cute, huh??

Just like the artist herself!

(Friday when she was home sick--drinking some fizzy lemon drink for her sore throat/cough from the local discount store.)

Thursday, March 7, 2013

Thank You, Henry and Viola!

Katya got a package in the mail today!

Look at her enjoying the contents!


Thank you, Henry and Viola (and your Mommy!) for being so kind and thoughtful! Katya was very excited about all of the things you sent from her Amazon Wish List. We took along the "If You Give a Dog a Donut" book to her Doctor's appointment this afternoon, and she watched the "Signing TIme" DVD before going to bed. I know the "Fancy Nancy: Stellar Stargazer!" book will get enjoyed this week yet, and all the items will be used over and over! What a great way to brighten up our day--because, when Katya is happy, we are all happy too!


Thank you   . . . what a blessing Katya's blog readers are to our family!

Tuesday, March 5, 2013

Some Needed Good News

Today was a day with good news, which was so nice!

First of all, when I dropped Katya at school, her Para (who I dearly love) pulled me aside and said she just had to tell me a story about Katya from yesterday! Well, when that happens, I know it's likely to be a happy, warm fuzzies sort of story, and this time did not disappoint!

She said that yesterday when she was assessing Katya's knowledge of the alphabet, showing Katya flash cards of both the upper and lower case letters, and seeing how many Katya could correctly sign for, she was also having Katya try to make the sounds for the letters. Katya can make the sounds for many letters now, but not all the sounds, even though she tries.

So when they got to the letter "K", Katya tried and tried to make the sound but was unable to. After a bit, she rummaged through the alphabet cards, found the letter "C" and pushed it over by the letter "K". Katya then signed, "Same! Same"!

The Para was so happy and astonished that she immediately texted the teacher who was not present at the moment to tell her what Katya had done! ;-)

When I came home and cheerfully told the story to Charity, she said matter of factly, "Yes, I know she knows that. I told her that when I was sitting with her during her bath and she was playing with her foam letters."

Yet again, Katya has demonstrated that she is absorbing knowledge in one setting and able to accurately transfer it and apply it in a new setting.

As the Para said, "She is just full of surprises."

Yes, kind of sort of not really.

Because you see, all along, we have believed that there is far, far more to Miss Katya than meets the eye of the casual observer. And that much that brands her in people's eyes as "intellectually delayed" is really a lack of teaching and exposure to even the most common of building blocks for educational development--such an extreme lack that in our minds here in the USA it can almost not even be comprehended by most educators and assessors. Even when I try to explain it to them, I think they don't really "get" how bad it was.

Anyway . . . moving on as I was walking out of the building, I ran into the person I had blogged about here. I had thought the last 6 weeks or so that there was being a shift towards a more positive outlook and approach towards Katya, and my convo today reconfirmed that! I'm so glad! I truly believe that Katya is aware of how people feel about her, and that the fact the person's atittude has improved some influences the fact that they reported to me that "Katya is smiling a lot more at me when I talk to her." And of course, that creates a happy cycle . . . because we LIKE to talk to people who smile and acknowledge us more than we do people who screech and/or refuse to acknowledge us in any pleasant manner.

I'm grateful for good reports . . . grateful for people who love and care about Katya at school, Drs offices, home, church and else where! I can not fully convey to my blog readers the huge changes that have occurred in her already, and she hasn't even been home two years yet! I can only imagine as her English understanding improves, and as she gets "building blocks" and "hooks" for her knowledge to go on that she will continue to bloom.


Monday, March 4, 2013

An Ethical Adoption Fundraiser

I have touched before, as have some of my readers, on the concerns about the need for more ethical adoptions. Too many times things are NOT ethical in the adoption world, and while there can be a lack of ethics on the USA side, things can get doubly murky as soon as your feet touch down on foreign soil!

So, it is with GREAT DELIGHT that I announce that my blog readers have a great opportunity here to help with a truly ETHICAL ADOPTION! My dear friend, Leah, set out to adopt her son, Axel, from Serbia a few years ago and ran smack dab into a lot of murk and muck and evil. She didn't take it sitting down. Instead, she spoke up. And as as a result of her speaking up, she was black-listed in a lot of the international and Down's Syndrome adoption community. What a sad thing, because as a direct result of Leah speaking up, the Serbian Government set about to create an ethical and transparent adoption process! No more bribes, no more illegal photo-listing of kids, no more sneaky, shady stuff! And wow, did the cost of an adoption in Serbia go right on DOWN after that!

Leah went on to adopt again from Serbia, under the new transparent and ethical adoption process, and found it so satisfying, she is going back yet again, seeking to bring Little B. home. Because Leah was brave and bold enough to speak out about the truth of what was going on, she has a very small support base. She has manageds to raise most of the funds she needs ON HER OWN.

However, she still needs a helping hand as she is in the final push! Here's where we come in--one of her friends has donated a KINDLE to her to use for fundraising! And now we can pitch in and help bring "Little B" home to his loving home where he will be cared for and taught to function to the full extent of his abilities. We personally don't have a ton of funds available but we have done what we can, because we are excited about this ETHICAL ADOPTION,  the transparent and fair process Serbia has, AND the fact that one more child will have a loving home and family!

Check it out, and help a child!! You can blog, Facebook and/or make a donation. And Leah will choose one happy winner at the end . . . Me, I'd LOVE to have that Kindle come to our house, but hey, if Leah gets the funds she needs, I don't really care *who* gets it, you know?!


Saturday, March 2, 2013

Technology and Dr. Dorafashar

Johns Hopkins posted a story about the technology that Dr. Dorafshar pioneered with Katya in March of 2012 prior to her 9.5 hour long surgery. (12 hours under General Anesthesia due to all the prep work they had to do on her prior to starting the surgery.) I am always happy to see stories of other kiddos who are benefiting from the ground breaking work he did with Katya!

Dr. Carson had told us the day before surgery that he truly doubted they could get every thing done that needed to be done in one surgery, but then he added, "I don't know. Maybe Dr. Dorafshar with his fancy new computer program can figure out some way to do it--but I doubt it!"

Well, Dr. Dorafshar DID figure out how to do it, thankfully!

Initially, because we had very little time to interact with Dr. D. prior to Katya's surgery, I think things were a trifle uncomfortable. He wasn't always sure how to take some of our questions, and we weren't altogether sure how to relate to him some of the time. But those issues were rapidly resolved and we grew to have a mutual understanding and respect. Can not tell you enough how much our whole family respects and appreciates Dr. D. as we affectionately call him now around here. He is always caring, concerned, and totally enthusiastic about Katya and her progress!

He has gone out of his way many a time to make sure Katya had good care--even staying up when on vacation in England and calling throughout the night time to issue suggestions/orders for her care when we had her in a Children's Hospital ER with unexplained swelling and pain around the eye he relocated. It's not every famous surgeon who will give you his personal cell phone number and allow you to use it! We always make sure we don't abuse it, but we are sure grateful for it when we need it! And the staff at the Children's Hospital were extremely grateful for his knowledgeable and caring involvement in Katya's care.

Dr. Dorafshar is a Dr. we would highly recommend to any parents needing a plastic surgeon for their child.


Friday, March 1, 2013

Books, Books, and More Books

One of Katya's blog readers, Fionn, asks: "Do you have a book wishlist for Katya and her siblings at Amazon? My kids would love to send you all some books :) ".

I had not thought of having a separate wish list for Katya--up to this point, I'd thrown her items in with our main wish list. But I think that is a great idea, and so now Katya has her own wish list!

Here it is: http://amzn.com/w/3H7TXA4IJTJN2

However, I have one **BIG** request--I'm going to ask that if you want to purchase her books, please do so through someone else's affilate link, **NOT** hers. Amazon for whatever reasons seems very concerned that people not gain any affilate money from people they are close to relationally. If you purchase an item to ship to Katya through her affiliate link, their computer algorithim will likely pick up on it and bar any future purchases you might make through Katya's affilate link from benefiting her. Never mind that I may not know you from Adam or Eve . . . it's just how their computer system works. It possibly may do so in the future even if you use some one else's affilate link to ship Katya an item from her wish list, as they seem to keep track of such matters, based on what another friend experienced.

We use the affilate link funds to purchase supplements, educational books and other items Katya and our family need, and I'd prefer the affilate link not get mired up from someone kindly trying to ship something to Katya from her wish list. . . .

If you still feel confused, feel free to ask questions . . .  ;-)

On the books front, Katya's classroom was one of the top 3 fundraisers in the school for the Scholastic books fundraiser. As a happy result, the kiddos got to bring home a free book! I don't know whether the children were able to choose what book they wanted, or if they were just handed one, but Katya was happy to bring home a Jan Brett book, "The Easter Egg". We are fans of most of the Jan Brett books, and I'm looking forward to having that book in our collection of Spring/Easter books. It's so refreshing to see the enthusiasm Katya is showing the last few weeks about books!