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

Dr. Ben Carson on Katya Dueck

Wednesday, October 31, 2012

School Program

Katya had a school program this week!

The school was so excited beforehand and kept asking us to make sure we would have someone there to see how great she did in the program. Since we didn't have any grandparents to go, Katya's respite care provider went, and Charity went. Charity got a lot of video feed.

Please enjoy this clip!





Isn't that the funniest thing?! I love the poison ivy song!

I hope to upload more video as I have time. Maybe we will be able to share some more with you.

Oh--the jumper Katya is wearing?? Check out Charity's blog for more info about it. ;-)

Tuesday, October 30, 2012

Art

The other Sunday, Katya was amusing herself in the time-honored practice of children all over with a bulletin and a pencil.

First she drew a very basic stick figure. Please note it on the right hand side of the bulletin. There are no really visible arms, nor legs, or feet.

She studied that for awhile, and then drew the stick figure on the left hand side. Please note there are now legs, and feet, and some sort of hands with fingers.





This was exciting! Then, she turned over the bulletin and drew again.



Behold . . . a nice face, and arms, hands with fingers, and legs with feet! She would study the legs, be dissatisfied, and attempt to make them longer. Evidently she saw that her first attempt was out of proportion? She would re-draw the bottom edge of the skirt as she lengthened the legs, so the final result ended up looking a bit interesting, but there it was!! She also wrote her name, and did all the other drawings you see.

This is the little gal who came home not knowing how to do ANYTHING but scribble the most rudimentary of scribbles, with a pencil grasped in her whole fist, just as a 6 month old infant would.

What a difference opportunities and love and praise can make!

Monday, October 29, 2012

Dental News

Today Katya had a routine dental exam scheduled for first thing in the morning. So off we went to our very awesome dentist.

She did much better than she did back in April, post op. Then she was so anxious that it was painful to see, and in spite of what he did to try to minimize her anxiety (and it was a lot) Katya still probably had an anxiety level of 6 or  7 on a scale of 1 to 10.

Due to how anxious and restless Katya is, no X-rays have ever been able to be taken of her mouth. And I had a bad feeling before we went in today that we would get some bad news. Sure enough--she has a mess in her mouth--a cavity that evidently started between two teeth has spread out and down, and is now visible and ugly. Dr. M. said it's so bad to the naked eye that he is quite sure an X-ray would show it being very close to her nerves, thus requiring extensive work, and then a crown for good measure. She also had 2 other smaller cavities.

The bad news is that to get this mess all cleaned up is going to cost around $2,000 or a bit more, since she will have to have IV sedation. No one believes that with her level of Post Traumatic Stress that she will be able to get through this dental work on anything less--not her Mommy, not her Daddy, nor her dentist. As Dr. M. said, "I bet I could get it done with laughing gas but we are talking someone holding down her hands and someone her feet, and I just don't feel like it's right to even think about doing that to her, given her past history."

I promptly assured him that there was NO WAY I would let anyone do that to Katya, knowing every thing I know.

Our insurance will not cover any of the dental stuff. We are waiting to find out if they will at least cover the anesthesia portion. Even if they agree to do that, we are still looking at well over $1,000 for the X-rays that will be done after she is out, and the dental work. At this point, I don't know what else to do but pray about it. Paul's work has not been such the last year that we have that type of money. We could probably go to our capital city and get the work done for free or nearly free at a dental clinic, but we would be working with staff who don't understand Katya's history and who don't have her trust as much as Dr. M. does. We really feel that having Dr. M. do the work is best for Katya, but we can't see how this is supposed to work out right now.

I have determined to pray about it and while seeking other options, hope and pray that the doors are opened for us to be able to have it done soon with Dr. M. before Katya begins to be in pain from the badly decayed teeth.

After that tale of woe, we need some sweetness, right?!

Behold Katya's braid coronet today before we left for the dentist.


Her big sister, Charity, lovingly does this for her now and then.

At the dentist, Katya got a crown from the goody box for being cooperative. She LOVED it, and insisted on wearing it to school! Amazingly, it fit tightly on her head!

She wore it all day till I came to pick her up, even though the coronet braid and her hair band were all pulled out (like usual). She wore the crown to music class.


And she wore the crown home, and clear up till she took her bath!






We love you, Princess Katya!!!

Saturday, October 27, 2012

Biking!

Before Katya arrived back home from Ukraine, Kristina had determined that she would teach her new little sister to ride bike. Since she had patiently taught Chad, who had a pretty difficult time learning, and never gave up on him, we figured she probably could accomplish that goal.

 When Katya arrived home weak from starvation and neglect, and shut-down in so many ways from trauma and abuse, we had to scale back the time frame and expectations for many things. But even so, Kristina never gave up on her ultimate goal. She had to revamp her goals when it quickly became apparent that Katya didn't possess even the strength to pedal, let alone the understanding. But she didn't give up.

When it was immediately apparent that a bike would not work, Kristina first started Katya on a small kids plastic trike that she could push while Katya's feet were on the pedals. Katya was content to sit and be pushed along. Eventually, with coaxing, cajoling, pleading and treats, and hours and hours of work, Kristina got Katya where she would half-heartedly make some pedaling attempts. Since her legs were entirely too long for the small size of the trike, it never worked real well, but at least she was getting some idea of the pedaling.

Eventually, that well worn toy disinigrated, and there was no point in trying to replace it as Katya was simply too big to use it properly. So Kristina next transitioned her to a small bike with training wheels. Katya hated it. She would whine and cry and try to get right back off. She wanted NOTHING to do with pedaling that bike.

There were many times Kristina would come into the house in tears and storming in frustration. We would hug her and tell her that if anyone could teach Katya, it would be her. We would try to brainstorm and work out new strategies together, but in all honesty, the bulk of the endeavor was on Kristina. She would gain new courage and go back again and again to work with Katya.

Week after week went by . . . and month after month. Katya began to make tiny signs of progress in small areas as Kristina coaxed, cajoled, pleaded, bribed rewarded and praised!

Eventually, Kristina came in one day glowing, to tell us that Katya had actually been able to pedal the bike forward for a short stretch while she helped hold the bike up. This gave Kristina new courage, and she pressed on in the lovely fall days we have had the last few weeks.

Yesterday, it became apparent that Katya is really being able to start to ride the bike! Yes, she has training wheels, but she can actually keep it upright and pedaling forward for a short distance even wtihout Kristina holding it up and pushing her! Given that she is pedaling on our gravel driveway or in the grass, this is a huge feat, and should be celebrated!  Kristina's patience and persistence and hours of love that she has poured into her little sister should be celebrated too!

  

Katya couldn't have done it without her big sister!!

(Photo taken late Summer 2011)







Friday, October 26, 2012

"Here Is the Church"

Many of you are probably familiar with the little finger play for young children called, "Here Is the Church".

If not, you can watch a version of it here:
Charity and I have done a similar version with Katya a few times when we needed to keep her quiet while in church or waiting some where.

Today, when Charity was doing a more complicated hair-do on Katya than we normally do, Charity glanced down to see Katya correctly performing this play exactly as we had done it for her a few times!! She did the whole thing from start to finish, complete with the appropriate spaces between each step as if she was saying it mentally to herself.

We were so excited! I know I say that alot, but it's true! ;-) We were and we still are!! This is the child that one of her caregivers mockingly told us had "nothing" in her head and laughed at us for wanting to adopt her. Every time something like this happens, I would love to video tape it and send it back for their viewing pleasure! Shoot, for that matter, I would love to video tape Katya for a whole week and be able to have ALL the staff at her former orphanage sit and watch it on their big, big screen TV in the Director's office. I don't think that my feelings are out of line either. I think it could be really helpful for them to have some education on how love and teaching can transform even a child that seems like a "hopeless" case! Wouldn't it be great to start a REVOLUTION of thought--and then treatment of special needs children who are condemned to living hells in orphanages all over the world?!!

Pray with me . . . God has not taken away my burden for orphans. Kristina and Katya may be home safe and well with us. But there are so many who still need protection. So many who need love! God willing, I will have much more to share about this in the coming weeks and months as I continue to pray and seek God's face and His will for me as it relates to orphans, and orphan care.

In the meantime, pray . . . pray for the kids who have no hope right now. Once that was Katya--and now she has life a hope, and a future!!


Thursday, October 25, 2012

New Friends

The last few weeks as I pulled into the school line-up for student pick-up, I often ended up behind a vehicle with out of state plates, and a sticker on the back of the vehicle that sure looked to me like the shape of Ukraine, with the colors yellow and blue in the same shade as the Ukraine flag! After a week or two, the plates changed to be our area's plates, and my curiosity continued to grow.

As nearly as I could tell with the little glimpses of the man who was always driving, he appeared to easily fit the "Ukraine look". The clincher finally came yesterday when the teacher who was radioing in to the school for the students radioed "Katya" for that car before radioing "Katya" for our car! I asked her, "Is there another student from Ukraine attending this school?!"

She told me that they had only recently moved into the area from another state, that the girl was named Katya and in 3rd grade, and spoke English, but the parent spoke English with a heavy accent. I asked her if she thought we could be put in touch, and she thought maybe she could say something when they had parent teacher conferences in the future.

Well, our excitement was running pretty high, and today when the man again pulled into the school parking lot right ahead of me, I was able to maneuver our vehicle so that I was beside him instead of behind him. Since there are two lines for pick-up, this worked  . . .

I decided to gird up my courage, roll my window down and risk making a bit of a fool of myself as I called out "Hello" and waved at him. He rolled his passenger window down and said "Hello" in such nicely accented English that I felt inspired to ask a few more questions. Well, we quickly exchanged some very basic info and when I asked him if his family would like to join ours sometime to eat borscht, his whole face lit up from ear to ear, and he said with great enthusiasm, "Eat borscht and perogies in America!" So I think that was a yes! ;-) We had to move on as the lines pulled ahead, and we were not able to keep talking as the distance widened between the two lanes of vehicles.

But I plan to try to figure out a way tomorrow to get our contact info to them, and then hopefully they will contact us . . .  I am so excited at this chance to make new friends from Katya's birth country! We love the friends we have from Kristina's birth country, Russia, so our whole family is very much looking forward to this opportunity. I hope it works out and ends up being a joy-filled experience for both families. ;-)

Tuesday, October 23, 2012

Of Art Therapy, Music, and Other Good Things

The last 24 hours have contained so many exciting things that I am not sure I shall have time to report them all. But I will make a valiant attempt!

Exhibit #1. I present for your perusal the following photograph of a drawing.



When Katya was at music class, there was a lady bug roaming around. She of course, was terribly distressed by it, and the teacher, hoping to distract her and calm her fears drew the top two sketches of the lady bugs. Later, Katya added the other two bugs and even added the legs and antanae, especially as noticed on the blue bug! The teacher reported that after drawing these bugs, Katya seemed much less agitated by the lady bug. YAY for informal art therapy! ;-) Plus, I'm just so proud of Katya that she was able to imitate those drawings/real life bug! When she first came home to us, she had no fine motor skills when it came to drawing or coloring, and would grasp a writing or coloring item in a whole-fist grasp much like a 6 month old and her scribble would fill the whole page just like that too. It was clear she had not been exposed to writing instruments. Can you imainge?? 6.5 years old and not used to coloring? Or drawing? Or for that matter, cutting or pasting either!! So many new skills she is learning!

#2. She continues to do well at her music class, and according to her teacher, yesterday: "She is taking more charge of putting the stickers on and is able to more readily recognize the groups of two. We held up our two 1st fingers to find the groups of 2. She found the 1st set by herself and began placing the red stickers on. She needed some help finding the other places. She did, though know without being told to draw a green "C" on the "C" note. I would like this to be her "Project" that she can set up the piano without my help. She enjoys playing the "Cs" hopping from one to the next, which is good.
The biggest improvement was her playing "Climbing up the Hill" ( a five tone scale starting on the C) up and down repeatedly without help. I also had her play that with Brenda while I added a bass accompaniment so we were playing a duet. We all cheered as she did so well and she snuggled into my side so happy with herself with a big smile, very content and very pleased with herself : ) "
 
#3. Last night Paul and I were getting ready to go out to a meeting at church, and so I explained to Katya that Charity would bathe her and get her to bed, and that we would see her in the morning. She signed, "OK" and walked off, then after a bit came back and signed, "Hug!" all on her own! I was so excited as this is only the second time she has initiated by sign getting a hug from me, and it felt so normal and completely typical for a child to want to get a little extra hugging from Mama before Mom went out for the evening! I can't tell you how loudly my Mommy heart sang for joy on that one!! Remember, this is the child that supposedly didn't "like to be touched or held" per orphanage staff. Yeah, I'm not sure I would like to be touched and held either if the people who were doing the touching and holding weren't doing it lovingly even some of the time.
 
Then later that evening when Charity was rocking and singing to Katya, Katya was making great vocalizations, and doing some of of them in "pitch" or "tune" with Charity's singing. It seemed as if she was possibly trying to help sing along.
 
#4. This morning Katya wanted me to rock her, and let me know that by signing to me. I was rocking her and playfully saying, "Rock! Rock! Mommy is going to rock Katya!" or something like that, and Katya shocked my socks almost off my feet  by saying, "Rrr aaa ccckkkk". It was  not smoothly done, but all the sounds were there as clear as could be  . . She looked quite pleased when I praised her for saying "Rock". ;-) Her voice is still very "growly" and hoarse sounding far too often when she tries to talk, but we are seeing more word attempts or simple words coming. Please keep praying for her brain and emotions to heal, as there is nothing that she consistently really says yet, although she does seem to be fairly consistently saying "Daa" as in "Daddy" when she wants Paul's attention.
 
Ahh, this little girl is blooming!
 
 

Sunday, October 21, 2012

"I Only Regret . . . "

"I only regret that I have but one life to give for my country." So spoke one Nathan Hale.

And I often the last year or so have thought of that saying. Only when I think it, it gets changed in my head to something like this: "I only regret that I have but one life to give for my God" or "I only regret that I have but one life to give for orphans."

Even though I'm busy raising two young orphans-no-more, and have quite a few years ahead of me probably yet raising Katya, the burden on my heart for orphans has NOT gone away. I am not satisfied to think I have "done my share" and now can relax. There is so much more I want to do  . . . long desperately to do . . . and it makes me sad that I can not do more than what I can do right now. I feel sad to think that my life is probably soon about half over and that I have done so little for God and for orphans.

I continue to pray and to hold the dreams that I think God has given me about my role with orphans   . . . I continue to want Him to mold me into the person He wants me to be so that I am open hopefully to whatever God calls me to do in the future . . . our family continues to care about orphans and to be passionate for them. Pray for us if you think of it to know what doors God wants us to walk through when the time is right, and pray that we will be equipped to be ready for whatever He wants for us.

In the meantime, we stay busy raising these beauties--orphans-no-more by the Grace of God!




Saturday, October 20, 2012

School Related Questions

Laura Elizabeth Writes:

I've been following this blog for quite a while, and I too have been encouraged by the love that you are showing to Katya and the wonderful progress she is making. I can imagine how difficult taking care of her and teaching her must be at times, but I know at the same time that it is very rewarding (having had a little brother who for the first two years of his life was special needs).
I would like to ask a question or two, now :)
Do you homeschool any of your children?
Also, is it mandatory that Katya be in school, or did you just feel that it would be better for her to go to a school at this time?
Thanks! I will continue reading your blog :D


The Duecks Answer:

Thank you for your kind words . . . yes, every day with Katya is a challenge. Much more than we usually blog about. But we love Katya dearly and are super excited to see the progress she is making. It is lovely watching her blooming into the child that God created her to be, and leaving more and more of the damage from 6.5 years of neglect and abuse behind.

Up until we added Katya to our family, we had always homeschooled. Our oldest is in college, so that gives you an idea of how long we have homeschooled. But we knew as we went into Katya's adoption that her issues might be more than we could handle on our own. Our tenative plan had been to keep her home the first year for bonding and attachment and learning to understand English, then make a decision about whether or not to enroll her in school. And legally, yes, Katya had to be in school her first year home, whether at home or elsewhere. However, when Katya came home and began to repeatedly physically attack our youngest child, and nothing we or our social worker or other experienced adoptive parents suggested stopped it, we had to make some hard decisions for the safety and sanity of our family. It was clear we would not be able to homeschool both Chad and Katya. By the time school started, Chad was in emotional distress and badly needing his Mommy's time and attention, so we relucntantly made the decision to send Katya to our local school. Even though things have improved now (thankfully) with Katya as far as physical aggression on Chad, she still doesn't understand that Mommy can love two kids. Her experience at the orphanage was that if another child was loved by a caregiver, you were *NOTHING* to that caregiver.

For example, the favored child was held on the caregivers lap during play time and plied with candy. The rest of the kids who wistfully stood around looking?? They were given the EMPTY wrappers. I kid you not. Saw that with my own eyes. Now think about what message that sends to a child when that is what they experience for 6.5 years?

It's very undertandable why Katya comes screeching and screaming and trying to push Chad away from me when I give him a hug or try to sit down and have him practice reading to me. And we continue to address that beahvior, but it's still THERE all day long. And it makes it impossible for me to do a good job being Chad's Mommy AND teacher at this point in time with Katya in the house. That is why after a lot of prayers, advice from others and long and intense discussions the decision was made to send Katya to school again this year.

The good news is that at school this year, Katya is clearly more comfortable and self-confident. She is blossoming in new ways since she is not so scared and can understand more English. She clearly seems to understand that school is a temporary thing for the day, and then she is coming home. We find her eager to go to school, and she comes home ready to relax and play generally in a good mood. Prior to school starting this fall, Katya was so bored and restless so much of the time that she got into a lot of trouble and had a foul mood far too often. No matter what activities we tried to keep her occuplied with, it happened again and again.

While she is at school, our family can function more normally than we can while she is home. I can focus attention on the other childen and help them with their school work. We don't have to worry that the library books we have out using are suddenly hidden, nor that she will come screeching and screaming just because Chad gets a hug. Those 6 hours every day while Katya is at school allow us to do things that need to be done such as Kristina's music lessons that happen via Skype, or a much needed trip to the library, or a field trip. Those things are very hard to impossible to have happen with Katya around.

While we continue to hope and pray that some day Katya can come home to homeschool with all the rest of the kiddos, we are very grateful right now that she can go to school. Her going to school is what enables us to still be able to parent our others, and gives us all a chance to have peace to recharge emotionally so that we are ready to care well for her when she comes home each day.

Friday, October 19, 2012

Borscht Time

A bit of left-over roast and veggies meant it was time to make borscht at our house. Charity started cutting and pulling the roast into smaller pieces, and Katya, after observing with interest for a bit, began to whine unhappily. I asked her if she wanted to help, and if so, to go wash her hands. So she ran off to wash and came back and happily helped.


She took her job seriously. And we are glad, because she is learning important life skills when she helps in the kitchen.



 And since Katya was so very, very helpful, Charity soon had the borscht ready to stir. Katya was thrilled to help with that as well.




Borscht making makes for a very happy little gal at our house! And why not?! It's amazingly good stuff!







Answers For More Questions

Jabreman says:

Hello Beautiful Family!

I have been reading your blog since just before Katya's arrival home and have been honored to pray for her, her doctors and your family over the past many months.

I want to thank you for sharing your journey with all of us who read your blog. It gives me courage for when things are bleak in my own world (or feel bleak)

I have a few questions and I hope you know you can answer any or none at all...

What is your family's faith background? I see that you wear headcoverings and was interested. My husband is a rabbi and I know the customs in judaism for head coverings and I thought I would a




We reply:

Thank you very much for all the kind and encouraging words! And we especially thank you for all the prayers! They are so appreciated!

I was raised in a Christian home, attending a Allegheny Wesleyan Methodist Church until I was ready for 3rd grade. Then my parents decided to relocate to a new state and attend a Mennonite church. They eventually joined the church there, so I mainly grew up Mennonite. My husband was raised in an entirely different country (Mexico) in a German-Speaking Colony in a Kliende Geimende Mennonite church.  The reason I cover my head is from the teachings in 1 Corinthians 11. I like the Amplified Version here: http://www.biblegateway.com/passage/?search=1+Corinthians+11&version=AMP

I too find it interesting that headcovering for women is practiced in so many other religions. ;-) It encourages me and strengthens my belief in how important it is. ;-)


Jabreman writes:

I so appreciate your sharing your faith in God in your writing...once again, this buoys me.

We say:

Thank you . . . following God is the most important thing in my life, and it is because of Him that I a who I am and can do what I do. I hope my love for Him always shines.
 
Jabreman Asks:

Also, how did you raise all of the money you needed for your adoption? Did your church help? I bought one of Cherry's adorable bows...what other avenues of income generation did you pursue?

We Answer:

Honestly, we tried just about every thing! Every thing that was *Legal*, I should add. ;-) We sewed, we crafted, we sold every thing of ours that we could sell, with the help of many friends we did a spaghetti dinner and a silent auction that brought in over $1,000. Several bulb fundraisers through Dutch Mill Bulbs were done--and some of those fundraisers were handled by friends or family of ours in other states. We scrimped and did without. We ate primarily beans and rice much of the time, and if there was anything we could just barely do without, we did without. Our family is used to living simply, but we took it to "new highs" in order to be able to save the money for Katya's adoption expenses. We felt that it was only right if we were asking others to consider helping with her expenses that we do all ourselves that we could. It really bothers us when we see people asking others to sacrifice to help them cover adoption expenses, only to find out later that they are doing all kinds of things that they could do without. In our opinion, it's wrong for instance, to drop $250 on a tatoo, or to go out and get a nice big screen TV for Christmas, when you are asking others to sacrifice and give you their money.

And yes, our church friends pitched in and helped in various ways. In addition to helping with various fundraisers we did, one lady in our church did a Tupperware fundraiser, and there were quite a few Sundays we went to church and found cash neatly folded up and placed in our 'in house' mailbox there . . . to this day, we have no clue who the generous heart(s) were, but we have thanked God often and asked Him to bless them! Also, after we were home, the church ladies provided about a weeks' worth of meals for us in order to make things easier for us. That was very appreciated as well!

We are really grateful to this day for everyone who helped in so many, many ways, and we couldn't have saved Katya's life without the help of people who were willing to be God's hands and feet to Katya in the battle for her life.

Jabreman Wonders:

And finally, how long did you consider adoption?

We Share:

I [Hope Anne] knew growing up as a young girl that adoption was something I wanted to do someday. My Mom read "The Family Nobody Wanted" to us kids as a read aloud book when I was around 5 or 6. And I read it again myself many times growing up. There were a few other books that influenced my life as well. When my parents relocated to the Mennonite church, there were several families in the church who had adopted multiple times. I saw adoption as a positive thing, and it just reinforced my desire. In fact, I felt so strongly about it that for many years I felt that I would rather adopt than have biological children. I knew I wanted to adopt special needs kids because my oldest brother (who died when I was six) had special physical needs, and a younger brother had intellectual disabilities that affected him fairly profoundly, and do indeed, still to this day.

Paul was not brought up to view adoption as positively as I did, and it took much longer for him to feel that it was the right route, but he eventually became fully onboard. It would have been back in 2004 when he first really was sure he was called to adopt. After that we began our adoption of Kristina, and completed it in 2005. Our experience with adding her to our home was challenging, but not so much so that we felt like we would never adopt again. It still took a lot of time and prayer though before God gave Paul the go-ahead for adopting Katya . . . and that is a whole 'nother story that hopefully we can share at a later date on her blog here!

Jabreman:

Oh, and how long have you and Paul been married?

We reply:

21 years, if I can still do the math. ;-)


Thank you, Jabreman for all your support and help over our journey with Katya! May God bless you!

Thursday, October 18, 2012

Positive News

I'm happy that I can share positive news with you today.

When I walked into school with Katya this morning, I met the young man of yesterday. When he saw me and Katya, he looked searchingly at my face and said, "Good Morning, Katya!" while looking at me. He then started to move off, but the smile and "Good-Morning" I gave him must have inspired his confidence, because he stopped, came back and then said sincerely, "About yesterday, I'm sorry." I smiled again at him and told him, "I forgive you."

The teacher was not there yet, but the para apologized that she hadn't caught that yesterday. I assured her that I had seen she was busy farther down the row of kids (after all, she can't be every where at once with 25 kids!) and she said she promises me that none of the other kids in the classroom struggle with treating Katya nicely like this boy does. That they have worked with him and will definitely keep on. I pointed out to her that I have seen the others be very nice and welcoming each day to Katya, and I know that they are! (There are several girls who are going way above and beyond even to include Katya and make her feel welcomed--even trying to learn some ASL signs to use with her.) And that we understand that this situation needs more work, and we'll keep working together--on both kids--Katya and this young man--and hopefully by the end of the year they will be able to be civil to each other. ;-)

When I picked Katya up, the teacher told me that she had talked personally with the boy after she got to school, and she had asked him to think about how he would like it if he couldn't say a single word. He LOVES to talk and talks almost incessantly, the teacher said, so he had gotten pretty solemn at the thought of not being able to talk. He finally said, "That wouldn't be good!"

I feel good about the way the situation was handled by the school--clearly he is a young boy and needs more teaching in this area. While Katya needs continued teaching as well, she has made HUGE strides in her behavior towards other kids and she is the one with the huge disadvantage. If she can learn and grow and improve, he should be able to as well. Hopefully as they both improve, the relationship will improve as well.
 *****************************************************************************

And now for happy news about Katya's music lessons! These are excerpts from the last music lesson she had. See what you think about the encouraging things the teacher had to share!

Lesson

1. Ring Bell-- Katya rings

2. Place red stickers on double black keys ( C# and D#)
 She did this eagerly. This time instead of placing the stickers on all the groups of two and then coming back to draw on all the Letter Cs beside them as we had done before,  on her own she drew the C in the correct place after the first group and continued to do it that way.  This shows me that she remembered the routine,  has an orderly mind, has initiative and enjoys doing things herself. She chose the correct key 1/2 of the time, I think because she was in a hurry to do it and wasn’t being careful to watch what she was doing.  She then took much of this task on herself, and was consumed with this project.  Her attention span is growing as she is staying at the piano much longer on her own without wandering off.  I had to redirect her occasionally as she would race ahead and miss the groupings of 2 black keys.  (We also needed to pause and hop on each set of keys as well)

3. Draw a hill on a piece of paper, a Katya figure and the steps up and down.          After I drew the hill, I took her hand and she and I drew the details on the girl.  With a Lego doll we climbed up the hill and came back down.
 
4. Climb up and down a five tone scale by transferring the concept to the piano keys.  Right after I drew the hill on the keys, she on her own! without any prompting climbed up and down the keys without the doll tracing the hill line drawn on the keys as we had done last week  Earlier lessons she would climb up the hill and just keep going, not stopping at the G, (5th tone) Again she is remembering the routine and understanding what I am trying to teach her.  We were all thrilled and cheered and clapped.  She knew she had done well and was clapping as well, smiling. I rewarded her with bites of granola bar :  )

5. Rhythm instruments.  She enjoyed tapping a new bell suspended on a string.  The M. girls and Katya accompanied me playing a cheerful, march on the piano. 

6. Music game: Ring Around the Rosie.  She joined our circle and after the first round, understood, enjoyed the game and “fell” at the right time. 

Notes:

Did Katya practice this week?  Did you instruct her to do to do these steps?  Did you climb up and down the hill with her?  If not she is getting this on her own and has a great memory.

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Did you note the things I put in bold? So awesome! Especially the part about her getting "Ring Around the Rosy" and being able to participate with the other kids! Do you remember that a year ago Katya had no concept of playing WITH other kids really? Now, more and more, we see this coming. . . .

And the answer to the teacher's question?? Nope. We had a crazy week and did not once (to our shame) manage to get any practice time in with Katya  . . . she really truly remembered all that and went back and showed improvement without ANY practice help at home during the week . . . now how cool is that??
 

Wednesday, October 17, 2012

One of THOSE Moments . . .

UPDATE TO SITUATION

According to the teacher, who I emailed back and forth with today, this kindergartner is a troubled boy with a "lot of issues". The school is doing what they can to work with him, but his issues have seemed to bring out the worst in Katya previously, and they have clashed a lot. (Umm, yeah, given the chip on his shoulder towards her right from the start of the year, I'm sure!) They generally try to just keep them separate. The teacher was out of the classroom today (the para had her back turned to the whole incident this morning and was more in the middle of the group so she didn't hear it) but she will take it up with him tomorrow. When I pointed out that some empathy training might help this young man, the teacher assured me that they teach empathy and take it very seriously. I asked to be kept appraised of the situation (nothing has been said to me previously about this one particular child and Katya having huge issues, so I'm feeling like I was left out of the loop and am not very happy about that). I will check up on it periodically, and will be alert when taking her to school for any thing coming from him OR from her.

No, Katya does not have a 1 on 1 aide and yes, I believe that it would be helpful if she did. However, the school has not seen fit to provide one for her and she has to share a para with 24 other kids.

We really appreciate all the support and comments and feedback you all have left! Thank you!! We read and consider them all!!
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This morning when I dropped Katya off at school, she walked into the gym with a happy, pleasant look on her face, and stood close to the boy on the end of the row of bleachers they are supposed to sit on. There was no room for her to sit down there, and besides, all the kids were standing getting ready for the pledge at that second.

This Kindergarten boy is one I have observed before seems to carry a chip on his young shoulders towards my daughter. This morning his chip seemed to have grown to epic proportions as he stared with a ugly look on his face towards her and snapped loudly, "KATYA! No pinching! Katya! No kicking!" No "Good Morning". No welcoming smile. And she hadn't even DONE anything to him except look at him pleasantly.

She stood there looking at him in perplexment, then moved away. He then turned and said to me in this ugly tone of voice, "WHAT'S WRONG WITH HER?!"

I simply replied, "NOTHING." And I may or may not have added, "What is wrong with you?!" I think I said that, but after I got out of there, I wasn't even sure if I had said it or just thought it!!

Fortunately, after she moved away from this boy, the little girls lovingly welcomed her and made room for her to sit with them. So all was not lost, but my Mommy heart is furious and hurting again . . . I know this is what my daughter will face in life but it's hard to see it happen right in front of my nose.

What would you have done it if it was your daughter?!

Tuesday, October 16, 2012

More Answers to Questions

Leah asks:

What are your hopes for Katya's future?

We reply:

Our hopes for Katya's future are many. A very major one would be that hopefully she will learn to speak. If not, then hopefully she will learn to communicate well in some other manner. While ASL has been very, very helpful for her and us, it's slow going, especially wtih out her being allowed to have formal teaching and support for that at school Her teachers are supportive as much as they can be, and in fact, some of the children are learning some basic ASL signs too this year (YAY KIDS! Love your hearts!) but it's just not enough. We also have all the usual hopes parents have for their children probably . . . yet trying to remain open-minded and tempered by reality. However, each week Katya shows us new progress she has made in so many areas that we choose to remain full of hope for her future.

What are your fears?

Katya's situation is so unique that we have been told repeatedly that no one really has a clue what to expect for her future. So it would be easy to become fear-filled. We try to choose to trust God and not allow fears to rule us. However, I have to admit that we do worry about her future sometimes. Will there be a good systme of support for her as an adult should she not prove capable of supporting and caring for herself? Will she struggle with mental health issues as she goes into puberty/adult hood if she still can't communicate on a deepr and better level than she does now? Those are some of the types of questions we wonder.. And then a much more "current" issue--will her skull bones finish fusing? They have not fused in the time-frame that it was expected that they would, and we have been warned that surgery to correct that could possibly be in her future if they do NOT fuse  . . . none of us like to think about more surgery for Katya.


What skill would you most like to see Katya develop?

That's easy! Speech! ;-) After that . . . hmm. Probably the ability to understand how to wash and rinse dishes correctly so she isn't always sneaking dirty dishes into the cupboard, and putting clean dishes back into the sink?! Honestly, she is talented with so many house hold chores but the concept of how dishes should be properly done still seems to elude Miss Katya. In time . . .

I see from the video you posted that you wear a head covering. Is that to do with your religious beliefs?

Yes, I wear a heacovering in obedience to the verses in 1 Corinthians 11. Our two older daughters have both chosen to cover their heads as well.


What are your honest thoughts on Reece's Rainbow?

My honest thoughts are that it's a great concept  they have, and I think they started out well. Based on our experiences while adopting Katya, especially in country with their chosen facilitators, and the many other's experiences that have been shared with us, we can not recommend Reece's Rainbow with any enthusiasm. I wish honestly that I could. Maybe some day again . . .


(Yup, I know these are some tough ones! :P )

PS -- Love the blog! Katya is an incredible little girl, with an incredible mother.


Not too hard. ;-) And thank you for your very kind words. I totally agree about Katya being an incredible little girl! Not sure I'm incredible, but thank you kindly anyway for being so sweet! ;-)

Saturday, October 13, 2012

Answering Some Questions

Claire asked:

What is Katya's favourite song?

We reply:

We honestly can't tell you, because we aren't sure. Katya seems to enjoy many genres, ranging from classical to children's fun and simple songs! I honestly don't know of any music that we have played for her that I could say she definitely does not enjoy. We do notice that she seems to have a preference perhaps for Jim Brickman's lovely piano music, as well as Libera. We think that as she often will choose those options when given a choice of music. Charity has offered other options to her at times, and sometimes she will accept them, and sometimes  she will reject, but she NEVER rejects Jim Brickman or Libera. Since I love Jim Brickman's music, that makes me happy. And since Charity loves Libera, that makes her happy! So it's all good!

We also know that Katya LOVES Cedarmont Kids (available through Amazon as well as other places) as she will choose those DVD's again and again when she has a quiet time on Sunday to rest and watch a DVD. (She does not nap, but since her headaches began, she does seem to need to rest more than she used to.)

We play a lot of Praise and Worship songs and hymns at our house. We believe music is healing and that most especially the Word of God is healing on a deep level. Katya has learned to signs to "Here I Am to Worship" and brightens up perceptibly when that song comes on our play list, or is sung at church. She will begin signing along , and there is nothing sweeter than to see her signing along to that song with a happy look on her face! We look forward to helping her learn to sign other songs.

Katya's piano teacher continues to report encouraging things from Katya's lessons with her, and is impressed with how quickly Katya picks up new musical concepts. Clearly our daughter has a love of beautiful things--music included! Since Katya already learned to play "Chopsticks" prior to her surgery, and remembered and was able to take off and play it again post-op after nearly 6 months without lessons (!!!), we expect great things are in store for Katya musically . . .

Thursday, October 11, 2012

Latest Lego Creation

One of the questions asked (thanks--I will work on answering them as I have time!) was if we could share more of Katya's Lego creations on the blog. Gladly!!

These photos were taken today.




After she started on this work of art, she gradually stripped off components from her previous projects to use in this one, so I'm glad I documented that one with photos!


Piece by piece, Katya creates her lovely little world.


Clearly she has a love of order and beauty, and it shows in her Lego creations. This project has kept her busy for over a month now!! She tweaks little things here and there, tries re-arranging for the best look, and so on. I hope Katya will get more Legos for Christmas! They are such a great way to occupy her busy mind and hands, and are terrific for her brain development, I'm sure.

Wednesday, October 10, 2012

Fall Activities

Apples .  . . .



And more apples . . .



First 2 bushels, and then a few days later, 3 bushels came into our house.

They were washed.



 Then cored and trimmed, and cut into pieces, and then cooked in big kettles.
Finally it was time to set up the Victorio strainer.


Chad was THE MAN for helping turn it . . .


All my children worked hard.


We enjoyed seeing the fruit of our labors.


Well over 60 qts total of applesauce, plus 7 qts of apple pie filling, and qts of applebutter AND fresh applesauce that we ate.
 
 So grateful for the food for this winter. It is very comforting to have some of my empty jars filled up once again.

Katya didn't seem that interested in helping with the applesauce when she would come home from school, much to our surprise. She was slightly curious, but didn't seem to care much beyond that. But the day she came home and found Chad taking a break from helping with applesauce by raking leaves she was ALL OVER IT. She seemed to LOVE raking, and Chad was happy to have her help. He has undertaken to keep the leaves racked and hauled out to the garden each year on his own. We are very proud of him. ;-) And now proud of Katya for helping him so willingly! Plus we figured it was a good bonding experience for them too. . . here's hoping so any way!





Tuesday, October 9, 2012

Animal Sound Imitation!

Last night we put on the book, "Meet Biscuit" on our library's "Tumble Books". Katya loves the Biscuit books, and her face lit up happily as she saw what book she was going to listen to.

Lo and behold, to our great pleasure and shock, every time the narrator would read "Woof" Katya would try to imitate it! When they read "Woof! Woof!" Katya would make her deep little "uff ! uff!" TWICE.

We were so excited because Katya has never ever tried to imitate an animal sound on her own as far as we know. She has a few times tried to imitate our cat purring when we would coach her to, or make a "pp" sound when we tell her fish go "goup" but this was on her own . . . no prompting! And every single time the narrator read the "Woof". ;-)

Oh we need to keep on praying for this little gal . . . something is awakening in her little brain! May it continue.

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Thank you for all the good (even if challenging!) questions you are asking! I will try to answer them as I can! Right now I'm just taking a short break from our 3 bushels of apples we are canning today . . . so no time for question answering properly.

Monday, October 8, 2012

Report from Visit with Neuropsychologist

Prior to the visit last week to the Neuropsychcologist, the school did a few assessments of Katya's level of functioning.

Their assessment was, to put it mildly, bleak. For those of us who love Katya and interact with her each day, and see her strengths, it was hard reading. It was hard to see those assessments in black and white. Even though we KNEW that is about where she would come out at on standardized testing, made to be given to kids who do NOT have her disadvantaged background, it still stung.

For a few hours. Then, we made up our minds to realize that NOTHING had changed. Katya is still the same smart, funny, life-loving little gal that we know. She's the same gal who makes us laugh, and the same one that we marvel over each week. The same little girl who sometimes makes us go want to bang our head a few times against the wall, and the same one who makes us weep with laughter one minute, and with sympathetic tears the next.

Katya is the same little gal who rushes around with the broom and dust pan cleaning the floor, the same one who builds exquisite Lego creations, the same little gal who loves beauty and goes out to pick wildflowers, making sure to make the stem lengths the appropriate length to put into the vase she loves to use that sits on my kitchen window sill. The same music lover who takes piano lessons and is making excellent progress, and same gal who is doing 48 piece puzzles on her own.

She's still the Katya we know and love.

So, when Paul and I arrived at the appointment after driving nearly 2.5 hours to get there, we were much interested in what the Dr. had to say.

She led off by telling us she had been reviewing the records that she had access to. She said that first of all, as we probably know, there is little to no info on similar cases to Katya's, and that for that reason, no one has really any kind of an idea to tell us what to expect for the future for Katya.

She went on to say that to her it is a miracle that Katya was alive after 7 years of un-treated craniostynosis, and that even if she WAS alive when we got to the orphanage, she would never have expected to hear that Katya was up and on her feet, running, laughing and fairly functional as to her self care skills. She said those things are a miracle, and that even kids with cranio issues treated in a timely manner often have mild to moderate mental disabilities, and so it's not a surprise to her that Katya tested as showing "moderate intellectual disabilities". To her it was most surprising that Katya can be as functional as she is today, and that she clearly shows some very good abilities in some areas.

However, the Dr. went on, Katya's whole story is unusual enough that she does not feel like any assessments done on Katya right now are a accurate picture of her life long term. She said at best, it is a small snapshot of Katya's life RIGHT NOW, "today"  . . .and that over time, as we have multiple snap-shots, we may be able to put together a better picture, and a better understanding, of what Katya's life may look like as an adult.

Paul and I feel comfortable with that approach, and agree that it is a wise way to consider the situation. We further felt confirmation that this is the Dr. we wish to work with when she explained that she typically has trainees attend to much of the testing of a child, with her providing oversight and stepping in as needed for evaluation and interpretation. But with Katya's case being so unusual, she said, she did not feel comfortable handing her over to trainees, and plans to conduct all the testing herself. Paul and I (of course) heartily agreed with that after having seen how unprepared "trainees" were to cope with Katya's case at Johns Hopkins Hospital!

So, plans are rolling to get Katya a complete assessment. The Dr. said that we are at a good point out from surgery in terms of brain healing/recovery time to do a full-scale assessment and get an idea of where she is at  NOW.
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My invitation for questions is still open even though (to my surprise!) I did not get any questions yet! Maybe someone will have some tonight. ;-)



Sunday, October 7, 2012

What Would You Like To Know?

Some of you may have questions about our family, life with Katya etc. Feel free to ask them. I will likely answer them in the next post! I do reserve the right to choose not to answer a question if I don't feel it is in our family's best interests.

So ask away!

Friday, October 5, 2012

What the Support Group Means to Our Family

This is the video Charity took of the speech I gave on Sunday. I was asked to speak on what the local special needs support group means to our family for Disability Awareness Sunday. I was to keep the speech under 5 minutes. I felt that the time constraint had me nervous enough that I did less than my best, so I feel a bit shy about sharing this, but enough interest was expressed that I decided to swallow my shyness and go ahead and do so. This barely scratches the surface of what all the support group has meant to our family!

The little speech was officially videotaped and will be shown at the Joni and Friends Conference in North Carolina this weekend. I'm not sure whether it was shown already today, or will be shown tomorrow. One or the other. Having grown up reading Joni's books and being a long-time admirer of her strength and determination, I am honored that I have a wee part in a conference of hers! Who would have ever dreamed?!





Update On CT Scan

We have a good news/bad news scenario with the CT scan. Dr. Carson said that every thing looks fine. There is no reason evident why Katya should be having headaches. There is still room for her brain to continue to grow and all looks in order. That is the good news. The bad news is that then we have no clue why she evidently had two weeks of solid headaches, nor why they are evidently gradually getting less and less. However, we will be thankful that it seems they are improving. The last few days she has been very nearly close to her pre-headache self. Even the school is noticing how much better she is seeming again, so we know it's not just our wistful imagination. She's a lot more peaceful and happy, instead of being irritable and falling apart over every little thing.

Thank you to all of you who have been praying for Katya and our family. Your prayers are much appreciated!

Thursday, October 4, 2012

Gaining in Health

Having come home to us starved, with no body fat whatsoever--skin over bone--getting weight on Katya has been a challenge. Last year, every time she seemed to be finally gaining some weight, she would get sick and it would start to shed back off. Strep throat, pnuemonia, and several ear infections all contributed. We had to painstakingly work to get weight each time she would lose a chunk. After her surgery, when so many things went wrong and she was unable to eat for so long, Katya became very emaciated again--not quite as bad as she was when she came home, but uncomfortablly close.

When she gained back the weight she had lost and became once again her pre-op weight, we were so excited! Now, it's clear she has passed that and is actually starting (for the first time since she was with us!) to put weight on in places she had not been able to gain weight previously. Her back, for instance, is no longer skin over bone. Needless to say, I'm starting to notice a REAL difference in weight while holding Katya. It's harder due to how much heavier she is getting, and yet more comfortable in some ways due to Katya being less painfully bony. We rejoice as we see our little girl gaining in strength, weight, and health!

 
 
 
 
(All photos taken by Charity, the night Kristina was baptized).
 
When Katya came home, she wore size 3T clothing, and it sagged and bagged on her. Now, a little over a year later, she is wearing size 7 tops, and size 6 skirts/pants, and soon ready to move into size 7's in those. When she came home, she wore a size 11 or 12 (depending on the brand) shoe. Now she wears size 1's. But the biggest difference probably is in her hat size. See the one she has on in the photos? That's an ADULT sized hat. The kids hats she had just don't fit on her expanded head any more!
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News from school today! Katya worked really hard with her speech teacher, and successfully made good "D" sounds, using her voice! ;-) Not a whisper, folks, HER VOICE. Please keep on praying about speech for Katya! While we will accept Katya and love her no matter what, we want speech FOR HER as it will make her life so much easier. And the Supervisor for the Occupational Therapists had come to school today to check up on the kid's progress. Katya's teacher told us that she was very favorably impressed with how Katya's coloring has improved from this time last year. Yes, we see a huge difference too, so it was nice that they noticed it as well. ;-)
 

Tuesday, October 2, 2012

Hands Are Not for Hitting or Pinching

After meeting with the Neuropsychologist today who will be doing assessments on Katya (more on that another blog post, I hope) we stopped at a Barnes and Noble to do a quick pit stop and look for a book. Specifically, another book in the series I blogged about earlier here: http://www.blogger.com/blogger.g?blogID=6575953623774245321#editor/target=post;postID=8121513234991533904

To my delight, this Barnes and Noble had a whole raft of the books--more than the store where we first discovered the books, and I was able to use the gift card to purchase two more books for Katya--"Hands are Not for Hitting" and "Feet Are Not for Kicking".

So when we got home, I pulled out "Hands are Not for Hitting" and suggested that Kristina read it to Katya as "Hands are not for hitting or pinching" since pinching is currently more of a problem with Katya than hitting is.




Katya was NOT pleased with this book, and made it clear that she was unhappy that she was being subjected to a reading of it. Lots of unhappy fussing, and then . . . she hid the book thoroughly as soon as we weren't looking! After a fairly extensive and fruitless search later in the evening for the new book, I asked Katya to show us where the book about hands was.

She went dancing off acting totally clueless of what we had said, but right as she whirled to dance off, I was pretty sure I got a glimpse of a smirk that indicated some knowledge and understanding of what I was wanting. After each request of ours to show us where the hands book was located at yielded only MORE dancing with her back to us, Dad stepped up to the plate and in his best, "I'm the DAD!" voice told her sternly to show us where the hands book was! Katya stopped dancing, went right over to the bookshelf and dug carefully behind some very large books and . . . Wahoo! Katya pulled out the "Hands are Not for Hitting!" book and gave it to us! Needless to say, she got a lot of thanks and praise for being such a good girl and showing us the book!


Yup, we are all thankful for Katya, even when she is a little bit ornery, and we certainly are thankful that she understood what book we wanted, and what we wanted of her in regards to the book! We think that is soo exciting and cool . . .  and a good indicator of how much her receptive language is improving!
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A big, big THANK YOU to everyone who has been shopping through our Amazon Affiliate Link to the right side of this blog post. We deeply appreciate all the support as we care for Katya and her many needs. Thank you for helping to make it a little easier for us by doing your normal Amazon shopping after clicking on our link!

Monday, October 1, 2012

Pumpkin Cupcakes Recipe

By request, the recipe for the Pumpkin Cupcakes in the previous blog post.

 



Charity found the original recipe here: http://allrecipes.com/recipe/harvest-pumpkin-cupcakes/detail.aspx?event8=1&prop24=SR_Title&e11=harvest%20pumpkin%20cupcakes&e8=Quick%20Search&event10=1&e7=Home%20Page

She set about to make it "ours".

Their recipe looks like this:
  • 4 eggs, slightly beaten
  • 3/4 cup Mazola® Vegetable Plus! Oil
  • 2 cups sugar
  • 1 (15 ounce) can pumpkin
  • 1 3/4 cups all-purpose flour
  • 1/4 cup Argo® OR Kingsford's® Corn Starch
  • 4 teaspoons Spice Islands® Pumpkin Pie Spice
  • 2 teaspoons Argo® Baking Powder
  • 1 teaspoon baking soda
  • 3/4 teaspoon salt

Ours looked like this:

 * 4 eggs, slightly beaten
 * 3/4 cup of oil on hand--no particular brand
 * 1.5 cup sugar
 * 1 (15 ounce) can pumpkin
 * 1 3/4 cups whole spelt flour
 * 1/4 cup Organic Non-GMO Rapunzel Corn Starch (thanks to our local "bent and dent" store!)
 * mixture of spices from our cupboard--1/2 tsp cloves, 1 tsp all spice, 1 tsp cinnamon, 1 tsp. nutmeg
 * 1 tsp. baking powder--from bulk food store
 * 1 tsp baking soda
 * 3/4 tsp salt

Their frosting recipe looks like this:

  • Frosting:
  • 1 (8 ounce) package cream cheese, softened
  • 3 tablespoons butter OR margarine, softened
  • 1 tablespoon orange juice
  • 2 teaspoons Spice Islands® 100% Pure Bourbon Vanilla Extract
  • 1 1/2 teaspoons freshly grated orange peel
  • 4 cups powdered sugar    

 Ours looked like this:

 * Non-dairy "Earth Balance" butter substitute
 * organic vanilla
 * 2 Packets of "True Orange" crystals or to taste (see website here: http://truelemon.com/products.html)
 * powdered sugar
 * slight amount of Rice Milk

Charity is a "cook by feel" gal for a thing like this, so she can't give exact measurements for the frosting. However, it was quite tasty, and met with approval.

We took it upon ourselves to add the fall-themed leaf sprinkles. We choose not to celebrate Halloween, but we are always up for enjoying any thing to do with fall. We loved these cupcakes so much that we made a second batch to take along to share at the picnic Saturday that was sponsored by our local special needs support group. I'm sure we will be making them again a few more times this fall--once we manage to snag some more cans of pumpkin! Our shelf is empty!