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

Dr. Ben Carson on Katya Dueck

Monday, September 23, 2013

Joni and Friends Family Retreat Reunion Part 2




Chad enjoyed playing ball with his Daddy for awhile outside. He also was sure Kristina should get in on the face painting with a butterfly, since he knows she loves butterflies.

And although not nearly all of our family's STMS were able to make it, our dear Kayla did! Her joy and enthusiasm always bless us! She loves Katya and it shows as she relates to her.


After some rousing renditions of camp songs, the party started to wind down. The time of food, fellowship and fun was so good . . .


I'm so glad that Joni and Friends provided this neat opportunity for our family. It's wonderful to be where we know people "get" the challenges we face on some level, and are perfectly fine with it. I think it was Kayla and I who were talking about how we think Joni and Friends is like a little taste of Heaven  . . just an appetizer to make us more hungry than ever to go.

Praying so much we will be able to go to a Joni and Friends retreat next year. I guess we will see how things are after Katya's up-coming surgery. We are trying to keep our hand open and not plan anything too much for post-op until we see how she gets through the surgery, and how recovery goes.

Sunday, September 22, 2013

Joni and Friends Family Retreat Reunion Part 1

Someone wisely decided that families should have a chance to get together to renew themselves just a tad without having to wait clear until the next chance to go to a J and F Family Retreat. So Friday found us loading up and rolling out after Paul got in from working for the week.

It felt really good to head West. It's been a long, long time since I was that far West--several years. Made me wish we could just keep on going and visit family "out West", but alas . . .that was not an option.

We stopped part of the way there for a picnic supper. After we were done eating and heading back to the car, what did Chad spy?!


Yes, a hatching cicada! He was so excited! He watched until it was almost completely out of the shell. He cheerfully exclaimed, "This is the best thing God did for me all day!"

His sisters watched too.


All too soon, the cicada was about out and we needed to leave.


We arrived at our hotel in time for the kiddos to enjoy some pool time. No photos, sorry. But it was neat to see Katya actually enthused this time about getting in the pool! She stayed sitting on the second step down in, but she kicked and splashed and generally had a great time. She's getting braver! Maybe by another year or so she will be brave enough for swimming lessons. . . here is hoping so.

We settled down for a night's sleep, and the next morning enjoyed a great breakfast of sausage, eggs, fruit and waffles at the hotel. There was also piping hot oatmeal that you could add toppings to and though I'm not a big oatmeal fan, I really enjoyed eating some that morning, thanks to the thinly sliced almonds, and dried fruit topping for it.

After we packed up and rolled out of the hotel, we had about 45 minutes to kill before it was time to go to the reunion. We found a nearby Barnes and Noble and walked in just as they were announcing that they were doing Saturday Story Time! So that worked out great!

It was so awesome as we rolled up to the J and F Reunion to see our dear Kayla who was one of Katya's STM's at the reunion. It set the tone for a great 4 hours. ;-) And it was a nice change of pace for our family to be able to relax a little and let Kayla do the Katya-chasing for a bit.

Face painting was a hit. Katya tried her hand at it a few times.



Chad was sure he needed another tiger face, similar to his in Jumonville.


Chad was quite pleased with the finished product!


RRRRRRR!!!


To be continued . . . .

Friday, September 20, 2013

And The Ear Ache Strikes Again

After some deterioration in behavior and performance at school this week, I was not surprised when the note that came home from school Wednesday said Katya had been holding her left ear. I called our Drs office and got an appointment for first thing in the morning Thursday. Sure enough, ear infection.

Katya is at extra risk for ear infections due to her cranial facial issues, and I also suspect she may be getting traces of dairy in the snacks at school. Since starting back to school, her allergies have been worse off and on, and we know ear infections have followed right on the heels of dairy ingestion in the past. Time for Mom to go shop for snacks I know are absolutely safe and request that the school only lets her have those. It's a hard thing to be a dairy allergic child when you live in a world with people who are NOT allergic. However, keeping Katya healthy and happy and her hearing intact is pretty important so we will just try do it as best we are able.

In the meantime, Katya is home from school and getting lots of love and hugs and her meds!

Monday, September 16, 2013

Retreating to My Happy Spot

Yesterday after church, we packed a picnic supper and loaded up for a short retreat to my "Happy Spot". A child of the West VA hills for part of my childhood, I am never happier than when surrounded by rocks, water, hills, and the "right" kind of trees. There is one spot in our state that fits that bill, and unfortunately it's way too far from me. I haven't been there in two years or so as a result, so it felt REALLY good to get back even though it was for a very, very short time yesterday.






 









All too soon, it was time to eat supper, and then head home to get the school kids into bed. Thankful that we had this outing. And hoping for at least one more before the cold winter weather hits . . .


Saturday, September 14, 2013

This . . . Oh yes, This . . .

Read this . . . 

I know what mine would say right now if I hung  a sign . . .

"Be slow to judge us. The economy tanked and my husband's work has suffered greatly the last two years. We are doing the best we can. My kids have developed some issues on top of Katya's issues that all rolled together are stressful. Please be patient if I don't seem to have time or energy or patience for much beyond my day to day stuff. I am in survival mode. I care, I love you, but I have nothing much left to give."

What would your sign say?

Tuesday, September 10, 2013

Guilty, Guilty, Guilty

The alleged care-providers of Hana Williams were found Guilty.

I have to admit, I find no joy in that, but a strange sense of relief. I assumed they would be found guilty, but you just never know. Hopefully this verdict sends parents every where--both adopted and not adopted--a strong message of warning. I hope it causes Adoption Agencies to take pre-preparation training more seriously, and hope and pray that adoptive parents AND bio parents learn to reach out to safe and wise people for support and advice, instead of relying on faulty and abusive parenting books/seminars/leaders.

We are thankful for the people who have reached out to us and given us timely wisdom in various ways as we parent our kiddos. We have also had our share of tons of bad advice dished out to us. When we were younger and less experienced, unfortunately we had far to too much faulty parenting advice pushed at us. It left some negative impacts and even though we have apologized and our kids have forgiven us, the impact is still there.

I think that is one reason I feel so passionate about this case. No, even at the time, we didn't swallow all of the stuff pushed at us, including "To Train Up a Child",  but having been a young, desperate parent who was having that pushed on me, I think it created some slight understanding of how a situation like this could start to spiral out of control. Fortunately, for us, we realized that the stuff being pushed on us was NOT working, and we went and sought more information, got evaluations, and got help for our child (and ironically, lack of discipline was NOT the problem--the problem was that they had  neurological issues that impacted their behavior.) Today, our child that "everyone" predicted horrible and dire things about is flourishing far more than even the experts ever thought possible.

I think if we had continued on a downward spiral, I would not be able to sit here today and type that happy sentence. Did you comprehend that? "Today our child that "everyone" predicted horrible and dire things about is flourishing far more than even the experts ever thought possible."

Get off the downward spiral if you are on it. It's not too late to seek advice, to seek support from people who can help you parent in healthy ways that do not damage your child and your relationship with them. This of utmost importance . . .

P.S. I'll just tell you right now one of the most freeing days of my life--when I decided to burn the majority of the "child training" books that were given to us by well-meaning people who were sure that if we just heeded the advice in their favorite book, that our child would be "fine".



Monday, September 9, 2013

Support Group Meeting and School Update

Yesterday afternoon we joined a local support group outing for families with special needs. It was held at a greenhouse that we had taken Katya to another year, so it was not a completely strange place to her. She clearly recognized the place, and recognized many of the kids and their families who were there, so it ended up being a pretty good evening for her. And of course, when it's good for Katya, it's good for us!

Great was our excitement when only mere minutes after arrival, Katya walked up to a goat and petted it through the fence!


Whoa! what a pleasant surprise!!! We have waited so long for this! And then it just happened!

Katya also greatly enjoyed rolling this piece of pipe around, with or without someone in it!


She was happy to roll the pipe alone or with a buddy.


The corn bin was a big hit with Katya--and I think all the kids, honestly.


But Katya was happy enough to join us for an expedition into the corn maze.

It was so sweet to see how happily she marched through, only occasionally glancing back over her shoulder to make sure we were coming.


Katya topped off the evening by picking up a pumpkin with **one** hand  . . . we were so stinking proud of her!!


What a strong girl she is becoming!

Notes from school today were so encouraging, especially one from her OT: "Katya did VERY well today. She has progressed SO much over summer break. Go Katya! I enjoyed working with her aide! [Katya] completed a 24 piece puzzle independently. We may have to write new goals for her!"   YAY Katya!!!


Saturday, September 7, 2013

A Bit of Fun












A few hours outing to a "Farm Days" event was fun for all of us. Katya wasn't too sure about the idea of riding in the horse drawn wagon at first, but she calmed down once she realized her big, strong Daddy was going to carry her up the steps and hold her. She always does think he's a little more of a protector than Mommy is--his is the head she tries to climb if something suddenly scares her and he's any where around! Otherwise, Mom will do, but Dad is definitely her preferred protector.  She ended up enjoying the ride, as I we thought she would.

We were only there about two hours, and then went for fruit at an orchard. We came home loaded with pears, peaches, plums and apples. We won't be canning anything but the pears (hopefully on Monday--two pecks worth.  Our jars are about gone, and our shelf space is about used up too! Thus that is all that came home for canning. I would still like to squeeze in some applesauce later in the year, but we'll see if that happens or not.

It was a fun outing. Glad it worked out that we could go this year.

Thursday, September 5, 2013

Oh the Difference Two Years Makes . . . .



The paper on the left is one Katya brought home from school this week. The paper on the right?? That was how she colored when she first went to school 2 years ago after having spent 6.5 years in an orphanage with no chance to color, cut, paste or otherwise do educational things.

Do you realize that we were told by one of her care-givers that Katya had "nothing" in her head?? And they laughed at us and basically mocked us for wanting to adopt her and thinking she had "something". Sadly, when you treat a child as if they have "nothing", that starts to become make your idea almost start to become true. When you treat a child with respect, love, and give them opportunities to develop their talents to the fullest, then growth and progress can often occur.

Never underestimate what your child can accomplish if given the right support and tools.



Wednesday, September 4, 2013

A Happy Update

We think we will get good news when going back to the dentist with Katya in a few months for her 6 month check-up. Why, you ask?? Well, Katya's jaws has been small in proportion to the rest of her face, and her teeth were stuck tightly in her mouth. As she got more and more adult teeth, the crowding grew worse, and there were hints dropped about extensive orthodontia in her future.

Recently I had mentioned to the rest of the family that it appeared to me that Katya's lower half of her face had done some growing. They looked, and said they thought maybe she just had gained weight, resulting in that appearance. However, last night when helping Katya brush her teeth, Charity called me over to look at her mouth. . . on either side of her bottom two front teeth, between her front teeth and the incisor what did we see?? Nice gaps! Gaps that were NOT there before! We were so excited, and exclaimed happily and told Katya she had done a good job of growing her jaw! She looked so tickled with herself and went quite happily up to bed!

I can't wait to see what her plastic surgeon says either when she sees him in October. He had commented a time or two himself on how she seemed tor have a small lower half of her face, which is probably part of what factored into the erroneous diagnosis of Crouzon's Syndrome she was given (without **any** testing to confirm it) in Ukraine. Her Doctor's here in the USA have been so sure she did not have Crouzon's that no one has even mentioned testing to officially dispute the diagnosis. I didn't think she had it either, and this nice jaw growth is just another good reason to conclude that she doesn't have Crouzon's.

I'm not expert enough to catch great pictures of Katya as she is not the easiest person to photograph, but I thought you might like to see a few I snatched after school today.





And not such a good expression but shows how full Katya's sweet face is getting.


Now if we could just get a good photo of those wonderful little gaps between her teeth!! Maybe Charity will be able to help me capture that at some point, but she's off to her group violin lesson, followed by teaching a violin student, and then youth Bible Study and fellowship time.

In other news, I had to smile when signing Katya out at school today. One of the teacher's was there, and she said affectionately, "There's our Katya!" I had to smile to myself . . . "Our Katya?!" I asked her, "What do you do with Katya?" "Nothing," she said, "But we all enjoy her so much!" ;-) Her voice was warm and dripped with genuine affection. I'm so thankful that Katya has such a great placement this year. She really is blooming and thriving just as we anticipated she would!

She goes happily off to school each morning with great enthusiasm, and when I pick her up, she is clearly happy to see me, but not angry and agitated like she was the previous two years so often. Today she actually climbed in the van and giggled quite happily for awhile. I know having proper services in the form of her awesome one-one-one aide who knows ASL is what is making the difference! The extra communication is helping Katya to be less stressed and better able to navigate the school system.

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Thanks to everyone who has been shopping through our Amazon Affiliate link on the right hand side. The proceeds from the items you purchase, have been going to help purchase the nutritional supplements that Katya's Dr who oversees that aspect want her to be on. I feel sure that the extra nutrition has been helpful for encouraging optimal bone growth. So thank you again!

Tuesday, September 3, 2013

A Word of Encouragement

I'm doing a big purging the last week or so, trying to get the house de-cluttered and ready for the inevitable stresses of fall and winter that this family sees coming at us.

But before I threw away a card that came a few weeks ago, I wanted to share it with you, and also so when I need the encouragement, I can go back and read it again.



Inside it says: "Wishing you all the patience and strength you need to see you through" and then my dear Aunt M. hand wrote the following message: "Dear Hope--Sometimes our paths are chosen for us--sometimes we choose them. Either way, some days are more difficult than others and some days more delightful but each day is yours to do with what you may. God is there to renew our hope when all seems hopeless. He gives peace in midst of chaos! Acceptance when there is no other solution. Just a note hopefully of encouragement--finding you on a down moment that we all have!"

It meant a lot to me to get this card and note from someone in my family. It reminded me again of how important it is that we encourage and support others! I want to do better at that myself. It's so easy to not grab those few minutes to take the time to do something like this, but it can mean so much to someone. I know it did to me. Thank you, Aunt M!

Monday, September 2, 2013

Kristina Crafts

Kristina's genetic condition, Turner's Syndrome, means that she will always have a small body. She has learned to compensate for being vertically challenged by using stools, and being ingenious other ways. A few months ago she happily informed us that the stool she had used for years and years was getting to be "too high". It meant she was bending down over the sink when washing dishes or working at the counter.

We set about to figure out a solution. It took us a bit till we found the right solution, but when we had cause to go attend to an errand in a neighboring town, we found a Micheal's Craft Store. While I was browsing the aisles, I found a stool that appeared to me just the right height. When Paul wrapped up his business in a nearby store, I consulted him. He agreed, and so the stool went into our cart, and came home to a very happy Kristina!

Since the stool was completely unfinished, Kristina was able to learn some new skills on the stool. First of all, sanding and prepping it for painting, and then painting it.

Sanded and ready to paint, after a little instruction from Dad.


Left-over deck paint kept the project cost effective.


All photos by Kristina. I  think there is something pretty and artistic about this last photo.

 

I was very happy that Kristina could learn some new skills, preparing a stool that will make life more efficient and comfortable for her. We told her that she can take the stool with her when she eventually leaves home if she wants to. Kristina thought that sounded like a good plan. ;-)