"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, July 30, 2012

Meeting With Social Workers

Last week I drove to our agency about 45 min. away and met with two of the Social Workers (SW) there. The purpose of this meeting was to start the ball rolling to see if they can help get additional services for Katya and our family. While I choose to focus primarily on the good things and the progress Katya is making on this blog, reality is that there are also a LOT of challenges that our family faces on a on-going basis with Katya.

While we are excited and grateful about all of her exciting and amazing progress, reality is that the challenges do tend to wear, like water dripping on rock steadily. Our family came to the point that we knew that we had to reach out and ask for some additional support services so that we can stay healthy and strong enough to care for Katya well. I think we have done pretty good handling all of this for over a year now, and especially since Katya got out of school in early March and was not able to go back--we have done it primarly alone now for months and months, without even the break that school was providing. We have had a couple of times of respite for 3 hours, and that is great, but it's just not being enough. School will soon be starting for Katya again and while that will provide some relief it will also be a challenge as we have to try to revolve our lives around her schedule. And homeschooling and a public school schedule often just seem to collide. And then there will be the stressful IEP meetings and other challenges that come with school. So school is definitely NOT a real solution to relieving stress for us . . .

The SW who did our first post-placement report had told us originally that Katya's needs were severe enough that we should have a full weekend of respite once each month, at a minimum. As a family, we haven't had one single night's break in over a year.

I broke down and cried various times during the several hours long meeting with the two SW's last week, thereby comfirming to them that we do certainly need more help, as they know I'm not one to usually cry. But I think the idea that there MIGHT be relief in sight made me feel really emotional. If all the applications go through, hopefully we will be able to have respite for more than 3 hours here and there . . . and also, we will have a therapy type session at least once a month with one of the SW's so that we can get support/ideas/vent or whatever is most needed. This will sometimes be play therapy with Katya and various members of our family, family therapy and therapy centered around helping promote on-going healthy attachment.

We are hopeful that this will all fall into place and provide our family some much needed support and the ability to breath a little bit again. The one SW told me, "We want to support your family in caring for Katya, because we don't believe it would be in her best interest to be relocated to a new home. You guys are doing a great job with her, and we want to see you stay strong and healthy as a family so you can keep meeting her needs." Yeah, us too. We sort of knew all that, but it was still good to have the Social Worker say that they believe we are doing what is right by Katya and meeting her needs. Even though we often feel frustrated and feel like the tough economy/medical bills etc. are preventing us from being able to provide for her all that we think she needs and deserves, I know Katya is getting far more than she would have been getting overseas . . . but it's still frustrates me when we can't afford all the things that I know would be good for her but just aren't in our budget. I have to try to console myself with the fact that her #1 need is love, and that we are certainly pouring into her and on her and over her. ;-) Katya knows she is loved, I have no doubt about that.

Katya sits at the end of our table for meals, so she can be between Paul and me. Today at lunch time, I looked at Katya and smiled. And I think, for the first time ever, Katya looked into my eyes and smiled happily back at me, out of the blue--with no words having been said! It was so special and warmed my heart to the core. . . and then Katya signed, "Happy! Happy!" as she grinned at me . . . WOWZERS . . . Yeah, me too, Sweet-heart. Me too . . . Mama is soo happy because a year ago, if I smiled at you, your face usually stayed blank . . . and your eyes dead. To be able to look at you, and have you smile back at me instantly, with no words exchanged is so precious . . .

Friday, July 27, 2012

Friends

One of the good things about adoption is how it broadens your world and brings new friends into your life! Some friends are short-term, others are long-term. When we were in the process of adopting Katya, we made several friends who are what I consider "life-long-friends". Leah, and her family, are definitely in the "life-long-friends" category! We were friends even before going to Ukraine, and our friendship deepened over Skype while in Ukraine. Leah has extensive experience in parenting children with special needs, being both a bio and adoptive Mommy of children with special needs. She also (YAY for us!) is fluent in ASL, having served even as an interpreter! In addition, she uses ASL with her two adopted sons.

Leah quickly became a life-line friend for our family, helping us with signs, holding our hand over Skype and the phone, and dishing out support and advice as needed. She also gave us much needed humor when we were feeling grim and needed cheering up! I honestly don't know what I would have done the first 6 weeks that we were home with Katya had it not been for Leah who was there helping me figure things out with Katya, vent, or cry or whatever I needed to do that particular moment.

So imagine our delight when Leah called on Wed. and said she could be coming through our town in about 2 hours if we wanted to meet her and 3 of her sweet children! I was finishing up with Katya's Social Worker at a town 45 minutes away, and still needed to grab lunch before driving home since it was long past lunch time and my blood sugar was tanking badly.  I alerted Charity, and she said she would rather meet Leah and her children in person than go off for her group violin lesson and Youth Bible Study, so she would make sure the house was cleaned up and ready for guests.

Well, bless my kiddos hearts--they made a list of what needed to be done, and by the time I arrived home, they had given the downstairs a good straightening up and cleaning, and things were almost ready for Leah and her kiddos. I was so happy and proud of them! Charity said even Chad and Katya had helped! Dear Hubby stopped by the store and picked up some things for supper. We threw burgers and hotdogs on to the grill and were able to enjoy visiting and eating supper together.

It was such a treat to have Leah and her children with us!



Represented in this photo are kids saved from mental institutions/orphanages in 3 different countries! Left to Right-- Serbia, Russia, and Ukraine. Not shown is also Axel, from Serbia. Standing and watching these lovely children being able to play together, knowing they are loved and cherished and cared for was a real thrill and a rather emotional moment for us.

Please note that Katya is signing, "My Turn!" in this photo, since she wanted her big sister to push her too!


My kids had a blast playing with Leah's kids--even Chad finally thawed out and did a water fight with Axel! When Leah and her children pulled out that evening, Katya began to cry sadly. And she cried for quite a while after they left. I think she liked having kids around who also signed!

Made us all so happy to have Leah and co here . . . I hope we can get together again before too many more years . . .  Having friend who understand some of the unique challenges we face with Katya, AND are fluent in ASL is a very cool thing. I'm very grateful that God allowed us to become friends.

Sunday, July 22, 2012

Katya Stories And a Prayer Request

Thought you all might be in the mood for some Katya Stories.

Yes? You are? Read on!

Tonight at supper we asked Katya if she wanted "More peas". She grimaced and wiggled her body and clearly was not thrilled but then her left hand popped up in the sign for "Three".  "Oh--do you want three peas?!" we asked. She signed, "YES" and we gave her exactly THREE peas. She was satisfied and ate them.


Last night we told Katya that in the morning we would go to church. I then asked her if she liked church. She got a very thoughtful look on her face and thought awhile, then signed "I love you" . I guessed--"do you LOVE church, Katya?!" she looked immensely pleased, signed "yes!" and then went bouncing off.

This afternoon Katya was looking at the pictures of Charity on the rappelling trip she went on yesterday. She got REALLY agitated especially about the one that showed Charity dropping down over the edge of the cliff. She was almost in tears--whimpering and being very agitated. Charity had to hug her and kiss her and reassure her that she was safe and HERE before Katya calmed down. I guess she did NOT approve of Charity rappelling!

We are finding things stashed here and there inside and out that clearly are Katya's handiwork. Charity's denim jacket, all neatly buttoned and under the back porch. A book tucked under the porch steps on another day. My dress hanging up in the coat closet--again, all neatly buttoned. Library books tucked here and there. It's definitely a challenge to make sure we don't lose things, and even with our best efforts, she is so quick and fast and we can't supervise her 100% every single second, so things DO disappear. We end up spending a lot of time and energy, and even money, due to this aspect. Most of the time we can chuckle ruefully or even whole-heartedly about our finds. While it's frustrating other times, it honestly could be worse, and we try to stay focused on the positive aspect--at least Katya is evidently wanting to be neat.

Our little girlie continues to challenge us and we continue to seek ways of reaching through to her. We are currently working with our adoption agency to obtain some extra support and guidance for some behaviors that are not so amusing. I will be going there on Wednesday to meet with two of the Social Workers and get some paperwork taken care of, as well as go over some of our concerns. I'm grateful that our homestudy agency is a top-notch agency that continues to "be there" for us even after Katya has been home this long.

Continue to pray for Katya and our family  . . . .  Our family faces some very large challenges right now, and we do need God's wisdom each day!

Wednesday, July 18, 2012

VBS

The church who does the special needs support group in our town, has VBS this week. It started on Sunday night and runs through Thursday (tomorrow) night. When they let us know that they were planning to provide trained teen volunteers to help the children from the special needs support group navigate their way through the sessions each evening, we decided that this could be a great opportunity for Katya to have some new and fun experiences in a safe and supportive environment.

Chad and Kristina were welcome to go as well, so we decided to send all three of them. The format of the evenings was similar to our own church's VBS which Katya had participated in, so we hoped Katya would find it similar enough that she would not feel stressed and scared.

The first night when it was soon time to start getting ready to go, we said, "Katya, do you want to go see Laura and the kids from the friendship party, and go to VBS?!" Katya's whole face immediately LIT UP and she began to jump up and down and flap her hands with excitement while she laughed in delight! Clearly, she recognized exactly what we were talking about and was all eagerness! ;-) She cooperated beautifully with getting ready, and went happily off, without the anxious rocking and keening that she often does when we go some where in the car and she doesn't understand for sure where we are going. She did great that first evening, and for each evening since. It's actually going to be sad to have tomorrow night end it because Katya is so clearly enjoying going! Chad and Kristina are enjoying going, are learning their Bible verses and generally having a good time too.

One of the teachers commented to me that she sees how protective Kristina and Chad are of Katya, and that they frequently will come and check on Katya to make sure she is ok. "That's a good thing," she said. My Mommy heart swelled a bit with pride because my other kids are just generally so awesome with Katya and truly do love her and are careful to be alert and watchful of her.

When Kristina and Katya go out together, Kristina loves to either match or coordinate with Katya. We can't always pull it off, but we do try. Katya has her red polka dot outfit that was her "coming home" outfit. It was so huge and baggy on her then that it still fits her now. Kristina wished she had a few more coordinating or matching outfits with Katya, so when we spotted a dress at a yard sale with a similar color and polka dot pattern for $1.00, it came home with us!

Charity cut off the bodice above the waist seam, leaving about an inch of bodice to turn over and sew down to create a casing for elastic. She hand stitched it since the fabric was a thin, soft and very super stretchy fabric. It was a quick and easy project to turn the dress into a skirt for Kristina! And Charity cut some of the top up yet to make a flower for Kristina's hair. Kristina happily wore her "new" skirt to VBS with Katya in her polka dot outfit as well tonight. ;-)

When Kristina came home carrying a white life preserver with red stripes that they had made as a craft in class tonight, I just thought we HAD to get a photo of the girls together with it. ;-)


Unfortunately, our camera is old and worn and very balky, and much of the time now will not focus completely so the next two photos are very fuzzy.

Still, even so, they show the smiles on the girl's faces . . . so I'm going to include them . . .  Love both of my dear girls!!


So thankful that they and Chad have been able to go to VBS and have good, wholesome fun times with other kids. Kristina said she has been able to see a lot of kids she knew already somewhat through her music lessons, and one of the girls from Katya's kindergarten class was there too. Katya clearly remembered her and is happy to see her each evening. M. has been happy to see Katya too! So . . . good times all the way around thanks to VBS!

Tuesday, July 17, 2012

Summer Fruit Leads to New Skills

Day to day living can provide new skills for all children. For a child who was neglected and abused, day-to-day skills are often behind where they need to be. Considering that Katya has two significantly dislocated elbows, some skills are hard for her to pick up. However, especially when it comes to the kitchen, Katya is always an eager student it seems!

Please note the awkward bent to Katya's arm/wrist here as she attempts to cut watermelon.
 


After a brief discussion, Charity and I came up with a plan that was better for Katya. A low stool helped give Katya better leverage, plus we helped re-position her arm/wrist to help her compensate for the odd angle she has to use due to the dislocation, and yet protect the wrist as much as we could from damage.


With the improvements, Katya happily sliced away at watermelon. Her slices were fairly even and neat, and she was happy working--especially when she realized she could take "Cook's Privileges" and taste watermelon all she pleased!


We continue to look for new ways to help Katya move toward one of our our long term goals for her--adult independence to the level she is able to achieve it.


Thursday, July 12, 2012

Long Over Due Update

We got back home from Baltimore from Katya's check-up in the early AM hours of Friday, June 29. Later that day, towards evening, a powerful storm slammed our state, and we lost power and did not regain it again until an entire week later on July 6! When all the dust had settled, and we were trying to return to "normal" (whatever that is!) we discovered that in addition to losing multiple surge protectors, our DVD player, Video Player AND our TV screen, our main computer tower was also fried. We fortunately were able to get it repaired and working on Tuesday of this week, so now I can blog again! A used TV screen was given to us, and we are still trying to be patient and wait until we can find a used DVD/VCR player. I will be glad when we can, as Katya uses them to watch her Signing Time Videos and DVD's, and her signing has recently just really taken off--something I credit in large to her using Signing Time. It's sooo fun to have her pull out a sign and use it appropriately when we didn't know she knew it!

Katya's check-up went well. Her plastic surgeon said that the damage from her plate dislodging does not appear to be too severe, and at this point there is nothing to be done but sit tight, and wait and see what time does with her head shape. It is slightly worse than before the plate dislodged, but not significantly. And since her head shape was not completely typical pre-or post-surgery ANYWAY I don't feel that we have lost very much. Her Doctor said that this is not usual, but hey, what HAS been "usual" about Katya's process with this?! Her whole case is very unusual--so unusual that there will be a whole article about the case in a medical journal! So none of us are terribly surprised that something more is unusual. The good news is that we are back on schedule to not return for another check-up until March 2013 unless something more crops up.

After we were done with the follow-up, we walked around the new Children's Hospital part for a bit. We were trying to assess Katya's comfort level in the new area. She seemed really comfy (not recognizing it as a "dangerous" part of the hospital) so we found the patient services office and enlisted their advice and help in getting permission to see if we could take Katya to the new PICU to say "Hello!" and "Thank you!" to the staff there! The Patient Representative who we most dealt with during Katya's stays in PICU, Rebecca, was on duty that day, happily for us! She remembered us and told us to come on up, and she would show us around! It was a happy, happy reunion!!

Some of the staff didn't recognize Katya right at first, so changed (for the better!) is she! There were happy hugs, some almost tears . . . lots and lots of emotions all over the place for ALL of us!! Sadly, a couple of the Drs who we really were hoping to see--Dr. Carina and Dr. Nelson--were not available right then to come say, "Hi" so Rebecca took photos of Katya after she rounded up a photo and promised to print them out and post on the bulletin board in the staff lounge. One nurse, who we had especially loved, Mary Lou, said, she had been thinking about Katya lately and wondering how she was doing so she was thrilled to get to see with her own eyes how happy and healthy she is now! Katya seemed clearly glad to see Mary Lou, and happily hugged her a few times, so I think the visit back was a good "closure/healing" thing for all of us. The staff who got to see Katya who had cared for her were really grateful we brought her back.

Since the new PICU is all private rooms now, unlike the old PICU we were in with Katya, there was not the concern about exposure to illness/patient privacy like there would have been if they were still based in the old PICU. Also, I am NOT sure that taking Katya back to the old PICU would have been emotionally healthy for her. But the new PICU is sooo vastly different a realm from their old PICU that she was basically fine with it. The only time she started to get worried was when we were taken to another area to meet some other nurses, and she could see a little boy in bed. She went closer to the doorway, and stared with a interested look, then became mildly agitated and looked worried. We quickly assured her that she was well, had NO OWIES and did NOT need the hospital and we were going to go HOME! Those words sent her off into a joyful fit of jumping and flapping with glee. ;--) She clearly understood.

Unfortunately, we did not have a working camera on this trip (the battery charger went missing on the previous trip) so I have no photos from the visit to share. Even though the visit to PICU made us get home a lot later than was nice, Paul, Charity, and I all agreed it had been well worth the time and effort to go back and say, "Thank you!" Chad was with us that trip but he chose to spend the hours at his "old stomping grounds" at the little Christian School/Day Care. He had a great time there with his friends, and enjoyed himself much more than he would have dragging around the hospital for the hours we were there.