"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, December 28, 2014

Christmas Break

We load up the kiddos in their PJ's and drive out at night to look at lights while listening to Christmas music. Katya finds this amusing, but signs, "yes" when we ask her if she likes it!

We drink quantities of cocoa and eat lots of popcorn while watching movies together.

Chad keeps working on his online reading tutoring program, and Katya closely observes.

Cooking baking happens.

And a few presents were opened.

And we rested from our labors.

And after resting from our labors, we rise up the next day to do more fun things.

And then more lights!


Christmas break seems to be working out well for us this year. Well, except for a few pesky little issues like not being able to find a few items of our Christmas decor, especially what we used in the girl's room! But, Charity, ever creative, solved that one. She used a milk glass bowl she owned, some greenery from one of our shrubs, and two absolutely adorable birds on clearance from Lowe's.

We have one more week to enjoy!
How is your life going?

(All photos credit to Charity)

Friday, December 12, 2014

And Back to Baltimore We Go

Monday, we ran Chad and Kristina to friends of ours to be baby sat, and then Paul came home, we loaded up Katya and Charity and took off for Baltimore, to return to Johns Hopkins yet again.

We got to the Children's House in time to enjoy the Christmas Decor and the new improvements they had made, relax and snack a little, and then head to bed.

We didn't have the best night for one reason or another so all of us were pretty sleepy the next morning, but Paul went and purchased the items we needed to fix our breakfast, then we fixed breakfast, ate and cleaned up. By that point, it was almost time to head over to the Hospital so we had to hustle a bit but we got there on time.

The Docs were not running behind schedule so even though we needed to see 3 different Doctors, we still got done in less time than we have often spent there!

She saw plastics, neurosurgery and genetics. Everyone was super happy about all the progress Katya has made developmentally, about her emerging use of the Ipad for communication, and over all how well she is doing. There were happy comments about how much more responsive and interactive she was than back in March, along with happy remarks about the contents of her progress reports and the samples of her school work. There was some concern about a remaining surgical screw in her forehead that is not absorbing as it should be, and the continued size of her "soft spots" that did not fill in with bone, but nothing is going to be done immediately about either of those issues.

After we were done with the Doctors, we went down to the out-patient lab to get some extensive blood work done as a number of things are being checked. This was not a good experience for Katya--for whatever reasons, the Hopkins out-patient lab seems to trigger her Post Traumatic Stress really badly, and now that we are sure that is what is happening, we will avoid getting any more labs done there if at all possible and  get them done at our local child lab where she consistently does much better handling blood draws.

 Right before we got to the lab, we stopped impulsively stopped for a photo beside this display. Do you see the Menorah to my left,  as well as the tree?

By the time the blood draw was done, poor Katya was so white, shaky and worn out that we had to stop at the cafeteria and allow her to recuperate over a frozen fruit bar! Then we walked back over to the Children's House.

There, we vegged out till supper time--which was brought in for the families thankfully. It felt good to just sit down and eat--no having to figure out what to fix and then having to clean up!

Figuring it would do us all good to have something cheerful to focus on before going to sleep, we loaded up and drove around the City Center on various streets. The light displays were stunning, and Katya was so appreciative of them (as we knew she would be!) so it was fun for all of us. Then baths and bed for us all.

The next morning we had to get up early for Katya's early morning appointment with the Wilmer Eye Institute at their Green Spring Station. Unfortunately, the trip turned into something of a misadventure when our GPS led us meandering around back streets of Baltimore that we had never seen! What normally would be about a 20 min. drive took nearly an hour and of course we were a good 15 min. late for our appointment! But I had called in when I realized what was going to happen and the lovely people there said to just be safe and get there when we could--and as it turned out, we had about the fastest in-and-out we have ever had at the eye clinic all the times Katya has gone there, so we were pleased about that!

Katya was pleased about her chance to choose a LOT of stickers after most of the exam and the drops were administered!

She then sat contentedly in the waiting room with her sun glasses on, waiting for her eyes to dilate.

When Doctor Repka examined her eyes, he gave us the extremely good news that Katya's "wandering eyes" had stabilized so much since March that he is taking surgery off the table for now! He was quite surprised that this had happened--he had not expected it to due to the level of brain damage Katya has because her craniostenosis  was completely untreated prior to her arrival in our home when she should have had surgery for sure before she was 2 years old--possibly even before she was a year old! He asked a handful of questions about any changes in her life since March, then happily told us that he is going to assume that the increased appropriate stimulation for her brain in her current school placement is playing a huge role in this wonderful improvement! That was excellent news for us--we knew already that the placement was/is SO good for Katya in so many ways, but to hear that is possible it improved even her brain's ability to control her eyes better is such a blessing and a testament to how important it was that we fought for her to be placed there! YAY for God-given answers for our girlie!

AND--YAY for the brain's ability to continue to assume new pathways in spite of the massive damage so that Katya can make forward strides in so many areas in life! We are very grateful!

After we were done with the eye exam, we skeddadled back to the Children's House so we could pack, clean and roll out towards home. Katya really got into the spirit of helping this time and due to that, we were able to get wound up there so much easier than it used to be!

When she realized we were stripping all the bedding off the beds to stuff into the huge mesh laundry bag, Katya gently showed us that we were not wanted--this was HER job! And away she went! She even pulled and tugged that huge bag out to the hall so Paul could carry it down to the basement! We were SOOO proud of her. ;-)

We traveled pretty steadily back towards home except for a stop to let her stretch her legs at the outlet malls in the Hagerstown area (they have a play ground) and then for a hearty supper. Katya wants soup every single day to eat and had not been much impressed with the hasty PB and J sandwiches we grabbed at the Children's House before heading home.

The Chicken Tortilla Soup was much more to her liking!

Yes, she seriously ate that entire huge big bowl of soup! ;-)

We arrived safely home about 8:30 pm that night, got Katya bathed and into bed. She was so exhausted from two short nights that we knew she would need to sleep in probably in the morning--and sure enough! She did not wake up till nearly 9:00 AM. Of course, her school ride had long gone, so after hastily getting her ready, Paul took her to school, and I went the other way with Charity to pick up our other kiddos.

Thankfully, everyone got home safely.

(All photos compliments of Wares By Cherry, with the exception of the last photo.)

Monday, November 24, 2014

Fall Decor

One day a few weeks ago when Charity I were zipping through Wal-mart, a roll of burlap with orange zig-zags caught my eye. After a few seconds of looking at it, I knew I wanted that burlap to come home with me. I had some vague ideas about canning jars and candles and burlap but I was not entirely sure how it would all shape up.

After a few weeks of thinking about it, I went to JoAnn's with a few ideas. Found the fall foliage was 75% off, and came home with a handful of foliage.

Once I pulled out extra mayonnaise jars and began to fiddle with every thing to see how it would all fit together, it was obvious that the burlap was wider than it needed to be. I experimented with folding it in half and cutting it with kitchen shears. That worked beautifully.

I measured roughly how long each strip need to be by wrapping it around a jar and then cutting it. Next, with my hot glue gun I carefully glued a bead of glue along the edges that overlapped. Then came the flowers! I snipped off smaller pieces from the spray with wire cutters.

 It took me some fiddling to figure out how what worked best, but quickly came to realize that tying the small bunch together with a short length of ribbon and then applying a thick bead of glue down along the "seam" of the burlap and gently pressing the bunch of flowers on, seemed to work the best.
The project did not take me long once I figured out every thing. The final touch is a tea light in the jar. I plan to add some of the glass florist beads for the candles to sit on, but it seemed to be fine without with my test candle. 

All done!


I think I will share some with Katya's teachers. ;-)

What fall decor projects have you done or are you doing?!

Tuesday, November 18, 2014

Wintery Fun!

Yesterday started off with a up-down swing to the day. School is delayed for two hours due to the snow. OK, fine. Snuggle in bed a little longer. Ok, time to get up and get ready to go--whoops--no, school has been cancelled due to the road conditions.

So we started every thing at home off right with mugs of hot cocoa and fresh grapefruits.

Then Katya and Chad bundled up and went out to explore the great snowy outdoors.

They had a fantastic time together--can anyone say, "Snowballs?!"

Charity had violin students that braved the roads and came for lessons so that filled up a good chunk of the day, I helped Paul with a work project, plus did laundry. Kristina was busy helping and doing school.

And so by evening, all of us were tired, but not too tired for some of the family to want to play UNO together before heading to bed.

Katya is learning how to play UNO too and loves it.

She really enjoys the game, and can have a great and happy time with it--but she also takes it quite seriously as well!


We partially credit her school with this happy new development. While they are not doing UNO in her classroom, they are practicing some other social skill building games. I think that has put down a good foundation for Katya to be able to build on at home.

Today, even though it was bitterly cold, the roads are clear so Katya was happy to go to school again. But all of us  rather enjoyed the "snow day" yesterday.  It's good to have wintery fun.

Thursday, November 6, 2014

Doctor Ben Carson--the Next President?

Of course we have been closely following Doctor Carson since he retired from his medical practice. So we were not surprised to find out today that he has announced that he has decided to run for President.

Should he win, it would feel very funny indeed to know that our President has not only shook our hands many times, but that he has operated on our child's brain!

Frankly, we wish him ALL the best! Having seen him even under pressure and stress in the hospital a few times, having heard what many, many people had to say about him from the cleaning ladies, to the cafeteria workers, to the nurses and other Doctors, we think he is the "real deal".

How very little did I dream when I read his book, "Gifted Hands" soon after it came out years ago that some day Dr Carson would be the Doctor who would save my child's life. And yet God planted the seed while I was reading that book . . . I remember calling my Mom up and saying, "Mom, if I ever had a child that needed serious brain surgery, I would want Dr Carson to be the one to do it."

Our family is truly grateful to Dr Carson for not only dreaming big, but putting his heart into his dreams so that God was able to prepare him and use him to save Katya's life not long before he retired. God's timing was impeccable.

And we are so grateful for that. Grateful for the chance at a healthy and relatively normal life for Katya that his willingness to take the risk of surgery gave her.

Tuesday, October 28, 2014

Well, Would You Look At That!

What's that? you ask? That my friends is a "Perler Bead" frog.

Katya came home from school, saw that Chad had made a frog using a little paper pattern (pictured below) and she began studying the pattern. Then she made her own frog--like the pattern. Please note, she only visually observed the pattern while holding it in her hand. She correctly placed the beads on a separate base.

Our girl is just full of surprises. I love that she is. I am thankful for healing. Thankful for how she is progressing.

But sometimes at times like this, I must admit, I am still angry at the neglect and abuse that she suffered. Katya could have been so much farther along in life by now had she been given even the most basic level of instruction and love and care.

I am still passionate with a fierce passion about what is going on for orphans in Ukraine--and Russia for that matter too. Our family will continue to advocate, continue to seek ways to help, and someday, God willing, we will do something in person to stem the awful hemorrhaging of  kids into the system in Ukraine. Someday, God willing . . . . I can not sit here and pretend it is all well and fine because Katya is home and safe with us. There are other kids who are in that same orphanage TONIGHT--right now. There are other kids in other orphanages which are even WORSE than where Katya was. It's not right. And as caring, decent humans, we need to do something to make a difference.

God willing . . . . and I pray the time comes sooner rather than later.

If a Picture is Worth a Thousand Words . . . .

Monday, October 20, 2014

Busy, Happy Days!

It seems we are having such busy, happy days there is never enough time. Charity's Monday's are full of violin students coming to the house, Tuesday's she goes to a biology Science class. She is taking the "honors track" so that is keeping her busy. Chad has been having reading tutoring on Tuesday's as well, which means I need to drop him off and pick him up an hour later. And Kristina and Chad both have piano lessons that day too. Wednesday's Charity has violin lessons (both private and group) and we try to all hit the library. Thursday's Chad has had reading tutoring again, and Friday is just packed with all the other stuff we are not getting done the other days of the week! Then Saturday's Chad has soccer and Sunday of course is full with church and sometimes other things! In addition to all that, there is Katya to get off to school every morning, and to welcome home every afternoon, along with events for her school, or special activities to participate in with her.

We have been working to ensure that Kristina can relearn her Russian, and as a part of that, we are trying to attend a Russian speaking church about an hour from our home once a month or so. The other Sunday, we took in their fall harvest festival. The service started at 12:00 noon and lasted about two hours. Then we all enjoyed an amazing pot-luck spread! Katya and Kristina both chowed down delightedly on dishes that tasted familiar to them. And we enjoyed trying some familiar type dishes as well as new ones that previously we had only read about--like "Herring Under a Fur Coat". 

Since the population of the church is primarily composed of families from various former USSR countries, the dishes were varied. We took a crock pot of Charity's amazingly delicious borscht and some good old American Rice Krispie treats to share--the latter seemed to be a big hit with the younger set there, and the former Charity got many nice compliments on.

The church was nicely decorated.

And much to the kiddos delight, the church was handing out plastic grocery store bags and inviting the children to select fruits and veggies to take home! My kiddos sure enjoyed that part!

In addition to the fun and good stuff, we have had some NOT so good stuff happen all in a short period of time. The transmission went out on our high-mileage mini-van, leaving us stranded an hour away from home till we got a rental car tracked down and all the other details figured out. Barely a week later, Paul and Chad were coming home from getting groceries when a lady coming from a viewing at a funeral home pulled out and slammed right into them. Paul's truck is inoperable due to that, and we are waiting on the insurance companies to solve that problem. Thankfully, neither Paul nor Chad were really hurt--Chad was scared very, very badly as she slammed into the truck on his side right behind where he was sitting. So he had some muscle tension and such from that but that was all. We have so much to be thankful for in both of those situations. And then, I suffered a concussion that has been impacting my life still way too much even though I feel fine now and am up and functioning. It just makes me rather stupid at times when it comes to simple things like oh say, talking--and Math. Hopefully since so much as improved for me already, those areas will continue to improve as well.

So that's the news from our neck of the world for now. How goes this fall for you all?!

Monday, October 13, 2014

Infinitely More

Today promises to be a good day. We are going to meet our friend, Alex Krutov, for food and another Russian lesson for the girls.

If you have never read his book, may I highly recommend it?!

Saturday, September 20, 2014

Vacation Part 2

By Day 2, Katya was a lot more settled into the idea of traveling instead of being in school. She did beautifully the rest of the trip for the most part, and truly seemed to enjoy it in spite of the many changes in her routine, new places, new faces, new foods and new experiences. All the books we had read to her ahead of time as prep to try to help her understand what a vacation was all about seemed to have been successful! ;-)

 She kept herself occupied in the van with activities.

She cooperated with our picnic meals.

She enjoyed smelling flowers.

She liked the water and the rocks.

She liked all the extra time to snuggle with her family members too!

(photo compliments of Kristina)

And once at the cabin on Lake Superior, Katya absolutely loved running out to the balcony each morning with her siblings when they woke up to look out over the lake!

(Photos used by permission of Charity, with the exceptions noted).

--To Be Continued

Sunday, August 24, 2014

Ukraine's Independence Day

Today is Ukraine's Independence Day. It is a poignant day, as they are celebrating their independence from the former USSR while simultaneously being forced to fight again for their freedom from Russian aggression in the East of Ukraine.

I was privileged to watch some clips from the parade and speeches, thanks to a new initiative launched today--"Ukraine Today"--English news from Ukraine!  Check it out!

In honor of Ukraine's Independence Day, here are some photos of our kids taken wearing traditional Ukraine clothing. I don't think I have ever shared it before, but on my husband's side of the family, our relatives came from Ukraine.

Miss Katya of course--taken this spring.

And and older picture of the other kids taken probably in the winter of 2009 or early spring 2010. I  purchased outfits for them when I first went to Ukraine in 2009.


They all are pretty fond of their outfits. Chad sadly outgrew his, but my friend, Anne, was able to find and purchase one for him that she brought to the USA when they came last fall, so he has one he can wear again. I really should get updated photos now that we have Katya with all the kids wearing them.

We pray for the peace of Ukraine, and wish them all the best!! Ukraine is very near and dear to our hearts. (So is Russia for that matter, but we do not appreciate what they are doing to Ukraine and their peace-loving people.)

Slava Ukraini!

Wednesday, August 20, 2014

Vacation--Toledo Zoo--Part 1

The end of July and first part of August, we were privileged to take a little vacation when a long-time family friend invited us to stay a few nights in her cabin on the edge of Lake Superior.

We prepped Katya ahead of time by checking out books on vacation from the library and reading them to her over and over. She seemed to like them, so we were hopeful that when we told her that we were leaving the next day for vacation that she would be happy and not stressed out.

She was! Until we showed up at summer camp to take her out a little early to leave!

Poor girl! She was crying bitterly as her teacher brought her to us. She calmed down a little when she realized everyone was outside waiting for her.

But she was still sad and would periodically burst into tears the first day and cry sadly all over again!

We stopped to eat a packed picnic lunch on the way to the Toledo Zoo. I don't think I got any photos of that--we were too busy trying to quickly eat and get back on the road so we would have as much time as possible at the zoo!

When we got to the Zoo, Katya was initially very anxious and upset, wanted her noise-cancelling ear muffs and even those were not enough help. Every thing was triggering her, and I began to think we might need to leave before we even got started really,  but Charity remembered to apply Peace and Calming and Stress Away Essential Oils, and Katya soon calmed down and began to enjoy the zoo--A LOT!

Chad was EXTREMELY happy! He is all about animals and wants to learn as much as he can every time he is at the zoo.

Katya and I were both fascinated by the elephants. That was probably the most enjoyable part of the zoo trip for me.


It was especially fun to see them using their trunks to blindly fish out treats!

The kiddos enjoyed the animal masks.

Our trip to the zoo was most satisfactory and a great start to our first day of vacation!