"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, December 31, 2012

New Year's Eve

 
 . . . we did the laundry.

. . .  we started Lemon Parsley potatoes in the crockpot for supper.

. . . talked to a few friends and heard about how God is moving in a situation we have been praying for!

 . . . rocked Katya and cuddled her (many, many times today).

. . . Charity did some sewing.

 . . . we put up the decorations on the New Year's Tree.



Katya loves hanging up her ornaments, and any others she can get permission to hang.

 
The 4 youngest are the ones who always help me do this, and we have a great time doing it together.
 
 
 
And the admiring commences.
 
It doesn't show in this photo, but dear friends of ours gave us two lovely hand-crafted Matroishkas--out of felts, I think, that are gracing our tree for the first time! It felt really neat to have their gift to put on!

 
 
Now that supper and baths for the youngest ones are done, we are getting ready to tuck them into bed and then we will enjoy the last little bit of 2012 that remains.

May God have mercy on us in 2013, and I pray that I can serve Him with a passionate heart. Happy New Year to all my blog readers!

Sunday, December 30, 2012

The Faces of Adoption

 
You wonder why I am passionate about adoption? Why I am spending my time advocating for orphans?

This is why. Our Kristina, before and after.
 
 
 
And this is why . . .
 
Our Katya, before and after.

 
With your own eyes, you can see. Love, a family, and good medical care make a difference.

Friday, December 28, 2012

Russian Ban on Adoption of Children to USA

Today has been another hard day for our family . . . on top of the grief we feel with Katya as she mourns her lack of ability to effectively communicate, we have been in mourning with the orphans left behind in Russia who have had the doors closed to any possibility of their adoption by Americans. As we have a Russian born daughter, this feels close to home and very personal to us.

She has been mourning as well. At nearly 13, Kristina understands some what how much different her life would have been had she not come home to us. She was ALMOST not adopted, as we only found out about her urgent need for a family right around 2 weeks before Russian officials planned to declare her officially "Un-adoptable", remove her officially and permanently from the adoption registry, and then condemn her to a living death in a mental institution.

Our lovely, sweet, and talented daughter in a mental institution?! Unthinkable, you declare!


And yet, sadly, all too true. We have in our possession the paper that was signed by the panel of medical Drs who "examined" her, declaring her to be an "imbecile" and not worthy of a normal life, in their midguided and uneducated opinion. Signature, after signature, attesting to their determination of our daughter's lack of ability to function in life.

Here in the USA, Kristina has nearly every door open to her. We fully expect she will be able to live and function on her own as an adult. She has friends, maintains relationships, and has a loving and caring heart. She is persistent (remember who taught Katya how to ride bike?!), loves to organize and has lots of patience when working with children. People who know Kristina love her. Children love her, and Chad will tell you with great fervor that Kristina is his best friend!



Kristina hopes to work as an adult in some capacity with children, and has actually seriously contemplated returning to Russia some day to work in an orphanage as a loving and ethical care-giver to orphans. She loves her birth country, and takes pride in the fact that she has duel citizenship.Kristina loves all the good things about Russia, and enjoys being exposed to Russian cultural events, foods, clothing and customs. She would no more think of harming Russia than she would think of harming the USA. Her heart is broken that the doors that are open for her are now closed to so many children.

Yes, families from other countries can (thankfully) continue to adopt Russian orphans. However, sad reality is that many of the special needs orphans--the most needy of the needy--will be passed over because many countries do not encourage or allow their citizens to adopt children with a high level of special needs.

Many more children will languish and die due to this law. Children should never be political pawns, and it is the children who will be most hurt by this unless Russia makes sweeping and massive reforms for the better IMMEDIATELY in their orphan program.



We can't imagine our lives without Kristina . . . she is a great big sister to her two younger siblings, and a loving daughter! What if the doors had been cruelly slammed in her face?!

Pray for the children of Russia who will be hurt by this, and pray for a sweeping system of reform and change of attitudes of the general population towards orphans.

In the meantime, I'm going to hug my girlie a little harder and a little tighter, and thank God again for bringing her out of Russia to live in our home.

[All photos by Charity taken this week after our snow storm . . . Kristina's first 5.5 years were spent in Siberia and she still LOVES the cold and snow!]

Thursday, December 27, 2012

Katya Mourns

Increasingly in the last number of weeks, we are observing behavior from Katya that seems as if she is mourning.

Charity eloquently, I think, blogged about it today. After reading Charity's post and crying about it together, she gave me permission to link to the post.

http://waresbycherry.wordpress.com/2012/12/27/katya-mourns/

Wednesday, December 26, 2012

Christmas Supper--Cranberry Jello Salad


As you can see, Katya was anticipating her Christmas supper last night!



She has been with us now long enough that it seems our traditional holiday foods are familiar to her, and she likes them. So no, she isn't scared at all, even though it may APPEAR that way in the photo below!


 
Katya was happy to sit and wait and study the candles while the rest of us were bringing the last things to the table.
 
 
I'm not sure, but I think her favorite holiday food is our cranberry jello salad. She certainly is keen to make sure she gets a generous portion each time we have it!
 
I'll be kind and share, just in case you want to try it too!
 
Cranberry Jello Salad
 
Make up 1 box strawberry or cherry Jello with scant water
1 heaping cup chopped cranberries
I can crushed pineapple in juice
diced apples, celery, and chopped nuts to taste
sugar to taste (1/4 cup or less?)
 
Mix all and chill well.
 
I will have to tell you that we always have to make up way more than this--we generally make up two large boxes and add accordingly more ingredients. We like our jello PACKED with goodness, so lots of apples and celery and what not go into the salad. We didn't have any nuts yesterday, so for the first time ever made it without nuts, and it was almost just as good without as with! So now you know . . .  It looks really pretty served in a clear glass bowl. I think we have fixed this dish for about every Thanksgiving and Christmas for probably most if not all of our married life. The children think no Thanksgiving or Christmas is complete with out it.
 
Do you have a "must have" holiday dish you would like to link to?! If so, put a link to the rcecipe in your comment!
 

Tuesday, December 25, 2012

A Mixed Bag Day

After breakfast this morning, we got the turkey into the oven and then gathered in the living room to listen to the story of Jesus' birth, courtesy of Biblegateway. We sang a few songs, then commenced to open gifts.



There was much loving thought put into the gifts, careful planning, and frugal plotting. Coupons, sales, and stash raiding were all used to make this happen.

The 3 youngers each got a Lego set from Mom and Dad, and a clothing item--a sweater for Katya, tights for Kristina and a shirt for Chad. In addition, a friend of mine had shipped a lovely floor puzzle for each of them (thanks, Sarah!).

Charity got a book she had long been wanting and a memory card for her camera that she needed, and a pair of socks. Her Dad also decided to go shopping  for the kiddos, and surprised Charity with a headset. She was very excited about that! He had a surprise for me too--a set of new speakers for our computer--the others were freebies when we got them years ago, and were long ago old and worn out.

Charity, Kristina, and Chad had thoughtfully shopped as well, in order to give gifts. They had pooled their resources in some cases. For instance,  Chad and Kristina gave their Dad a brain teaser book--picture differences, and Charity and Kristina had purchased a candle holder for me (probably my favorite gift!)

And with some help from Mommy and Charity, Katya had a few items from the Dollar Store to choose from to give a gift to Chad and Kristina. We don't know how much she "got it" but we figure she will never learn if not given a chance to learn! They were happy with what she picked for both of them--a tin box with a hinged lid for Kristina, and a Bible Story DVD for Chad.

Chad had lovingly picked out a new tub of PlayDoh for Katya, and Charity had not only sewn Chad a pair of fleece pants, but also gave him a coordinating shirt. And much to his delight, his dear doggy, Honey, had his own present too! (Make sure you watch all the photos in the slide show!)

Charity also made Kristina a skirt out of fleece with brilliant butterflies.



Katya was very excited that her first present was a small Lego set from Kristina.



She was so excited she shook!!

But then she made US so excited, WE almost shook too!!



Yes, your eyes are seeing right! Katya has the directions booklet open and is following it! This was a first!! With following the directions, she got that set assembled almost completely on her own! Granted, twas a small set, but even so! How exciting and impressive!

When it came time to open her next present, she was totally unimpressed--she was too busy with her Lego set. So we set aside her gifts, waiting till she was ready.

After the small set was put together, Katya was ready to tackle another present. We gave her the Lego set from Mom and Dad.



When she opened the packaging, her face about froze! She was shocked--clearly.

 
While her Dad cut the box open for her, she gapped in wide eyed wonder!
 


This set totally overwhelmed her with the amount of pieces, and so Charity settled down to help Katya put it together.



By the time it was together, Katya was an emotional and weepy wreck . . . she had no further interest in her couple packages still remaining, and in fact, she was so overwhelmed that I had to sit and firmly hold her for awhile as she wept and yelled and kicked. It finally took lunch and a long "down-time" on the couch listening to her favorite Cedarmont Kids DVD before she was able to regain her equilibrium and resume having a good day. She did later open the Play Doh from Chad, but has no interest right now in opening her last two packages. So they sit--waiting probably till tomorrow.

After a life of deprivation and lack of stimulation and appropriate toys, we are not surprised at this. Add in the fact that she can't express what emotions are churning inside of her, and this storm does not shock us.

I have to wonder if this richness, this abundance . . . makes her angry as she thinks about how she was treated and how she spent the first 6.5 years of her life?

I hold hope for the future . . . . hope that some day she will be set free to fully enjoy Christmas. As simple as our day was, and as few of gifts she received, I know any thing more would be completely cruel for her right now. In faith, I hold out hope for Christmas in the future. Hope that Katya will be able to communicate better, and will have found enough healing be able to plunge deeply into the joy that is Christmas--in all ways--spiritually AND emotionally AND relationally.

 
In the meantime, we will enjoy watching what pleasure Katya can derive from a simple and quiet day at home, with her family, and her beloved Legos!
 (Yes, her collection is starting to fill up the window ledge as you can see here!)




Merry Christmas to you and yours--because He came!!!

Monday, December 24, 2012

Merry Christmas!


Free Christmas Graphics - Image 6

http://karenswhimsy.com/public-domain-images/free-christmas-graphics/free-christmas-graphics-6.shtm

We are eager to see how Katya responds to Christmas Day this year. Last year, she was ill, after having been up a good chunk of the night with an ear ache. She was also very overwhelmed even though we only had a very few presents.

This year, we have very few presents again. I think she will likely not be so overwhelmed, as she understands English better, and has a better concept of gifts being given to her--at least, we THINK she does. She also was happy to pick from two "Dollar Tree" items that were suitable for Kristina, and two that were suitable for Chad, and then have Charity help her wrap up her chosen item for each of her sibs. She seemed to understand that . . .

Anyway, looking forward to tomorrow . . .

God bless each of you!

Sunday, December 23, 2012

A Solid Way to Help Russian Orphans

Some readers may know that in addition to the trip to Katya's orphanage in 2009, Paul, Todd and I made a trip to Yoshkar Ola, Russia, in May of 2010 to visit some missionaries there who work with orphans.

We took donations of craft supplies and other things that the missionaries, Maude and Valera,  made sure were distributed appropriately at several places where they had access. Because Valera is a native Russian, they have been able to establish working relationships in various places. One of the things that our trip showed was that there was a great need for glasses for orphans at the school for the blind where they also go. Kids were suffering from low vision that could be improved with glasses, simply because the orphanage system did not pay for glasses for them.

With the help of many kind people, money was raised to provide glasses for the kids who urgently needed them. Because Maude and Valera were able to take the kids themselves to get the glasses, we had confidence that every penny went for what it was intended for--glasses for extremely needy children. You can see photos of the happy children who received glasses, and find out more information at the "Little Loaves and Fishes" facebook page . We invite you to join and follow along there as updates are posted from time to time. You can also check out the (mostly dead) webpage for Little Loaves and Fishes that a young friend of ours does for us. Maybe some day in the near future, it will become more active again . . . we are praying . . . .

Now Maude and Valera are trying to raise funds to be able to provide some simple gifts for the orphans at one of the orphanages we visited when we were there. We met some of the kids they show photos of, and got to see the hand craft area, including the wooden loom pictured in their photos. The pride that the orphanage staff took in teaching these children was clear to us.

We would LOVE to see our blog readers have a chance to help support this worthy effort! Would you be willing to take a few minutes of your time to pop on over to Maude and Valera's blog and read about it, and then choose something to purchase? Or if you don't want to purchase, make a donation. I can assure you that the funds will be spent properly, and that the kids will benefit. And that's something that sadly, you can't always be sure of when it comes to donations to orphanages. . . .

You can also share Maude and Valera's blog on your blog, Facebook or other social media. Sign up for their updates, and pray for their work.

It has been our pleasure to not only visit Maude and Valera in Russia, but also to have them visit in our home and speak in our church in 2011, I believe it was. We are greatly looking forward to them coming again next month to visit with our family and speak to our church again.

Please seriously consider joining us in supporting their work with orphans in Yoshkar Ola, Russia.


Friday, December 21, 2012

A Family With An Urgent Need

Friends of ours that we know and love in real life, Greg and Kristie Godwin, are in the process of adopting again. Having adopted previously from Ukraine, they are now adopting from China.

Please go follow along with their blog: http://godwinadoptionblog.blogspot.com/  and do whatever you can to help with their adoption process! I know how much we appreciated ALL the support and love that was shown to us during Katya's adoption process, and I would love to see our blog readers come along side this family and support them as well!

Thank you . . .

Thursday, December 20, 2012

Here's What Is in Our Future

As promised, the report from our conversation with Dr. Dorafshar after we have had time to process it . . .

Katya is going to need more surgery. We had been warned that due to how little bone they had to work with to try to expand her skull compared to how much her skull needed to be enlarged, we could easily end up with "gaps" where not enough bone could grow to fill in the expansions. That would mean that Katya would need bone graft surgery to fill in those gaps. This was described to us initially by her surgeons prior to her cranial vault and expansion surgery as a ugly, very painful surgery that they didn't like to even think about having to put Katya through.

Lately though, we had been suspecting that we were looking at that, and Dr. Dorafshar confirmed that at this last appointment. Katya has several areas--one being a fairly large area to the side of her eye--where she has nothing but dura protecting her brain. Not much protection, as our family doctor soberly pointed out on Wednesday. His face looked thoughtful, and he very soberly said, "A fall and hitting that area on something like the corner of a table could kill her. . . . "   Deep breaths. Deep breaths.  Yes, we have been aware . . . it's the reason the school has strict orders to call us if there are any falls or blows to her head.  . . . we live on a high level of alert all the time with Katya.

As you can imagine, this was a big enough blow. The next one was that Dr. D. confirmed something else we had been suspecting--it appears as though Katya's right eye has been pushing forward more and more. Dr. Dorafashar checked things out carefully and agreed that it appears that it is, and that we are probably looking at another  future surgery to relocate that eye properly back into the socket. He said that due to the extensive amount of surgery they had to do, things are going to shift and change as her brain grows in new ways and her body tries to adjust  . . . This is called remodeling, and while we were aware that some of the changes we were seeing were that, we weren't sure if the eye shift was related to that or not, so at least this set our concerns that it was possibly something more serious at rest.

The bony lumps that have begun appearing on her skull are from her body trying to heal the cuts in her bone. Think how a broken bone can grow too much bone to try to heal itself. That is what we have going on with Katya's head . . . Dr. Dorafshar said some day in the long and distant future when she is much, much older he would probably recommend surgery for that too to try to smooth and neaten things up. But it's not anything that needs prompt attention. So we can draw a breath about that for now.

Also, Dr. Dorafshar gave us a referral to a "world renowned eye Doctor" at Johns Hopkins to get more evaluation for Katya's eyes. Her left eye that was relocated stopped tracking properly with her right eye and so that needs attention as well. Because of how complicated her medical history is, and how that eye was already surgically relocated, Paul and I had been talking about how if she needed more surgery we would like to have it done at JHH just so her other surgeons would be available easily for consultation and input. Having Dr. Dorafashar bring this up and ask if we would like a referral felt like a confirmation to us of what we were feeling in our hearts. Isn't God good to provide guidance for us?! I'm guessing, based on what we know, that until Katya's skull issues and eye relocation issues are all resolved, we aren't going to be facing surgery for stabismus. But we'll see if any thing is recommended such as patching etc. and hopefully get a better idea of exactly what is going on and what they expect will need to be done to take care of it.

So while we got a lot of not-so-good news . . . and we are needing to just go back to God again and again  for strength and peace as we look ahead to the future with more significant and serious surgeries, we also got one very big ray of cheer from Dr. Dorafshar--"Given every thing we had to do, honestly she looks phenomenal!"

One thing else that we are very thankful for?? Any time you have to begin working with a medical professional, especially one who is just "assigned" to you like Dr. D. was to us by Dr. Carson, you have to learn to know them, and they have to learn to know you. We had very little "getting to know you" time with Dr. D. prior to Katya's massive surgery, and our interactions especially immediately after that were usually ones dealing with her latest crises. And then of course, there were the  . . . umm, ISSUES  . . . shall we say . . that we had with his residents?! All those things made for some interesting relational things to be dealt with. But he hung in there, and we hung in there, and the good news is that over time, I believe we have achieved a high level of mutual respect and confidence in each other and our mutual concern for Katya's best well-being. This last exam felt like there was a high level of comfort and ease swirling around in the room, and clearly we are on the same page with each other. This is a good thing, especially since it looks like Dr. Dorafashar is going to be playing an important role in Katya's life for some time to come yet.

And for that, I'm very grateful. Katya's needs are challenging enough that we need to feel a high level of ease with her care providers. I'm grateful for the sacrificial care Dr. Dorafshar has shown repeatedly for Katya and for the fact that he is willing to respect us as Katya's parents and work with us as he is. It is good. It is very good.

Wednesday, December 19, 2012

Oh Dear . . . .

 . . . Katya was still running a low grade fever when we took her in to her family Dr. today for a check-up. I would never have guessed it, as she acted like she felt fine! That, combined with the fact that her throat was "gunky" had Dr. J. decide to keep her out of school till Friday. Thankfully, her ears finally look pristine, and her lungs were clear.

But dear me--Katya will have ended up missing school for most of the month of December! That sure is not what we wanted to have happen. She had been doing so well until all this cascade of illnesses happened.

At least after we got home, she happily spent the day puttering around the house coloring, playing with her Legos, and helping in the kitchen.

Paul doesn't have any work right now (yes, we could use some prayers about that) and so he was around to help keep an eye and ear on things. I was actually able to lay down and sleep for about 2 hours which did a lot to help me feel like I'm beating my virus back. Unfortunately, when I got up, Kristina had succumed to it now, and was miserable.

Hopefully, we all soon get shed of this bug and are back to our happy. healthy selves. I'm a bit shocked at how hard it has hit some of us, but I know our family has been under tremendous stress in many, many areas of our lives the last several years, with no vacation, and I suppose it's not entirely shocking that we will start to see some areas of life just not doing too well.

It is well known that parenting a child with special needs puts significant levels of stress on a marriage and family. We are thankful for the strength God gives us and for the support we do have. However, I won't pretend that it's easy or that we are all doing super great. I think we are doing well given the challenges we are facing, thanks to God, but the stress and especially lately, the lack of sleep and general stress is taking a huge, huge toll on our family. I feel like there is not enough of me to go around to meet all my kid's need for time, attention and teaching. Things that could seem like a simple thing to others feel overwhelming right now to our family.

If you are are a parent of a child with special needs, what do you do to ensure a healthy, intact marriage and family?

And if you have been involved otherwise with a situation as a care-giver and want to chime in, please feel free to do so! All helpful and supportive comments are welcomed.

Tuesday, December 18, 2012

Baking Adventures

Charity took good care of her sibs today when Paul and I needed to take off again and run to meet with the NueroPhysch Dr. to go over the results of Katya's evaluations.

I just want to give a shout out to Charity as she often bears a lot of responsiblity on her slender shoulders. Charity has made a LOT of sacrifices to help with her little sister. She has had to do all sorts of things that we would not have preferred to lay on her, and she does it and does it very well all  frequently most of the time!

Take today for instance . . . . Not only did Charity fix Katya a tasty breakfast, she served it to her in bed!

She also helped Katya with a new project--making corn meal muffins, with Katya being  primarily responsible. Since we had found boxes of organic muffin mix at the local equivalent of a "bent and dent store" that had simple picture measurements (and only a few ingredients!) we were eager to give Katya a chance at learning how to do that.

Frankly? She loved the project!



She clearly understood that she was in charge of this project, and instead of waiting for Charity to take the lead in every thing and then assisting as she normally does, she was going ahead with things and Charity was her helper.

It got a little messy, but hey, not bad for the first time, right?!

 
Katya was eager to wipe up the spills neatly before the tin went into the oven.
 
 
 
Our happy, busy little Princess Cook.
 
 
Thankfully, the absolutely horrid and scary sounding cough she had Sunday night/Monday seems to be gone, she didn't require any fever or pain meds all day, and since she had a scheduled Dr. visit for tomorrow, I'm hopeful he can clear her to return to school.

I will try to update more about the meeting with the Dr. when I have her report in hand to refer to for specifics. We do feel very positive about the evaluation process and her conclusions about Katya so far. We look forward to having her as part of Katya's team of professionals in an on-going manner.

Monday, December 17, 2012

Home Again

We had a good meeting with Dr. Dorafshar, although he wasn't able to figure out **why** Katya is having this swelling. She woke up at the hotel Monday am with the swelling gone again. Fortunately, he had seen photos and had the reports of two different ER Doctors about her swelling, and he was most concerned that we know he believed us totally, even though there was nothing really of the swelling for him to see.

Dr. Dorafashar's initial plan when we showed up Monday AM was to immediately admit Katya and start the process for getting her a MRI with Genera Anethesia. But because she had developed a nasty sounding cough Sunday night, we questioned politely the wisdom of General Anethesia, and his staff contacted him immediately, and he said for them to hold on the admittance until he could meet with us.

After he heard Katya coughing, he said that he didn't want to go ahead with admittance/General Anethesia due to the increased risks to her. Also, because the [pesky] swelling was gone again, he wasn't sure if the MRI would tell him any thing right now. Since the swelling has been playing "Come and Go" since Thanksgiving Break, who knows what is going to happen at this point! I'd like to think that it is gone for good--and indeed, that is what we are all hoping for! But realistically, and given that this is Katya . . . well, who knows!

He did do a very thorough exam of Katya's head, and spent some time talking with us. We have some new news to process from things he told us, and after we have been able to do that, we will share.

So now we are home, and in just a few short hours we need to get up and then run to Cincinnati Children's to meet with the Dr. who did Katya's assessments for the follow-up appointment. Please pray for all of our family as we are continuing to not be able to get enough sleep and are fighting this flu virus . . .

And a very big thank you to everyone who has been praying, helped with child care, feeding our cat, getting our mail, the donation from our local special needs support group for some gas money etc. We really appreciate all the many kindnesses of everyone who pitches in to make this work as we care for Katya and her unique set of challenges!

Sunday, December 16, 2012

Leaving for Johns Hopkins

We are leaving in about 2 hours for Johns Hopkins. Dr. Dorafshar wants to see Katya first thing tomorrow am to assess her swelling himself. The Drs at Children's did not know what is wrong, nothing makes sense . . . so after a lot of consultation with Dr. D. (God bless him--he again lost sleep last night for Katya!) it was determined that Katya was stable enough for us to take her to JHH ourselves rather than air medical transport.

She is positive for flu, and very miserable with that. Her Mommy still has the flu bug too. I've had worse flu, but not being able to rest properly has made this one linger and smack me way hard. Please pray for us as we are having to travel while ill. I'm not looking forward to it for myself, and I totally 100% pity my poor little gal. But I agree--it's time for her surgeons to see her and assess whatever is going on themselves. As everyone kept saying last night, "Flu explains a lot, but it doesn't explain every thing." And it's the "every thing" that is concerning the Drs.

Specific Prayer Requests:

For Katya--for healing and peace of heart

For health for us

Childcare arrangements on such short notice

Wisdom for Katya's Drs and the other medical staff at JHH who will be following her

The "earthly" provisions to all be worked out--lodging etc.

For our other kids who are once again having their plans and lives thrown into an upheaval


Saturday, December 15, 2012

In ER

Back in Children's  ER with Katya. Pray for her and for wisdom for the Drs.

Edited to say that as of 2:00 AM Dr Dorafshar wants us to get Katya to JHH so he can assess her. We are waiting on labs before the decision is made to air transport or let us drive her there. Please pray.

Friday, December 14, 2012

Tradgedy in CT

As the details are unfolding about the school shooting in Connecticut, my Mommy heart is so thankful that I snuggled and hugged Katya this morning before she went off. My heart hurts for the parents who are grieving right now, for the extended family . . . had they hugged and kissed  their child?

I can't hug them and tell them in person how sorry I am . . . but I will hug Katya even tighter and harder when she gets home today, God willing.  My heart is breaking for the families, the emergency responders . . . the rest of the school . .  .  No one should ever, ever have to live through this.

Thursday, December 13, 2012

School Report

This week, on Tuesday, Katya's SLP introduced the "Hip Talker" to her. Katya accepted wearing it around her waist for the duration of the session, and quickly took to using it to communicate "yes". She had to be repeatedly cued to use it for "no" but we have long noticed that "yes" seems to come easier to Katya than "No" does, even when signing in ASL so I'm not surprised somehow.

Today the SLP came to her classroom and spent some time working there with her on it. She then left with Katya wearing it. Katya only kept it on about 10 minutes after the SLP left and then wanted it off, but at least it is a start.

After Katya was home this afternoon we asked her if Mrs. W. had helped her with the "Hip Talker that goes around your tummy, and could you tell her 'yes' and 'no' with it? Did it talk for you?!" Katya grinned from ear to ear and jumped up and down with excitement, so I take it that she was thoroughly pleased!

We are feeling hopeful . . . . very hopeful.

Brainstorming is going on about the aggression. The school made several "Social Stories" type videos illustrating how much biting, kicking etc. hurt and then illustrating good ways to get people's attention. They used several of the little girls from Katya's room that she seems to really like to act in these videos, and then showed the videos to Katya today. She eagerly watched the videoes and seemed to like watching them. The sschool has asked us if we could show them to her each morning before coming to school for awhile. Yes, gladly! We are all for doing whatever we can to try to reach through the communication barrier and help her.

I understand that the school is attempting a "Behavior Modification" plan. We have not been appraised as to what that envolves or contains. Yes, I suspect that may be a bit irregular. I haven't tried to pretend that every thing that goes on at Katya's school is by the book. The good news is that they are being more proactive--and yes, I do plan to try to get my hands on a copy of the plans and since an IEP meeting is scheduled for before Feb 10th, 2013, it will more than likely be brought up for discussion at the IEP meeting.

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I'm very happy to report that even though poor Katya has been bombarded now with about 10 days worth of antibiotics, she has NOT shed weight. Please note that this is the first time since bringing her home that she was ill and on antibiotics and didn't shuck weight like crazy. She is positively getting finally a tiny little TUMMY and more clothing is getting small on her. We are grateful that she has not lost the weight we fought so hard to get on to her slender little body! Her appetite has remained good overall except for when she was the sickest--and even then, she ate adequate amounts--just less than her normal.

I don't know for sure enough to say what this indicates, but I would suspect it's a good sign in terms of her body healing from the starvation that she has been able to maintain her weight even during this illness.

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As to the rest of us, many of us are down ill with some type of virus that brings (depending on who you are) headaches, eye aches, wickedly sore throats, coughs, ear aches etc. Kristina thankfully has been well through all of this and helps a lot with Katya when the rest of us are barely dragging around with our tails clear on the floor (figuratively speaking of course!)

Wednesday, December 12, 2012

Special Lego Offer

As anyone who has hung around this blog for a short period of time knows, Katya LOVES Legos. What you may not know is that when Katya came home, she didn't know how to play with toys. To her, toys were just objects to juggle in her fingers and stroke her cheeks with to try to get some stimulation. Any little piece of paper or cardboard would work too.

This is a common symptom of "failure to thrive" which comes from a lack of love and positive attention--and in Katya's case, also involved a lack of food and medical care.

We started with very simple toys like you might give a 6 to 9 month old, and taught her how to play with those toys, and then kept moving her onward. First she learned to play with Duplos, and then she moved to Legos and happily stayed there, playing wtih them in ever increasing complex ways.

Since Katya is a Lego fan, I tend to keep my "pulse" on the Lego news. I'm not taking advantage of this current Lego special offer, but I thought I would share it with my readers just in case any of you want to. And no, nothing in it for me. Just wanted to share it just in case it would help any of you!




 
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Katya had a better day at school today overall. We sat down and read both the book
Hands Are Not for Hitting and Feet Are Not for Kicking to her before taking her to school this morning. She was very unhappy that we were reading those books [again!] to her, and we explained that since she had hurt the kids yesterday at school we needed to read them to her. Katya's extremely glum countenance and fussing sounds accompanied the reading of both books and she was quite happy when they were done.

I am prayerfully considering reading them to her them in the AM before going to school if she was aggressive the day before. She clearly is annoyed when we read them, so I think it does have an impact on her, since she is beginning to enjoy us reading other books to her, and it's easy to see the difference when we read "fun" books versus these instructional and conscience pricking books. Since her teacher reported that she did kick a child once today, she will likely get the another re-reading of the "Feet Are Not for Kicking" book tomorrow a.m.

I pray God gives us wisdom in parenting our little gal . . . pray for us if you think of it, OK?!

This post contains affiliate links to Barnes and Noble. All opinions are my own  . . . .

Tuesday, December 11, 2012

And Her Middle Name is Rose

The school last year taught Katya to write her first name. This year, they have been working with her to write her last name. She's not always very accurate in her spelling, but she gets at least a close approximation a lot of the time.

In the last two weeks, Kristina, with support and help from the rest of us, has been working on teaching Katya to write her middle name, Rose.

Today, Katya brought home a paper from school.

For the first time ever on a school paper we saw, in Katya's handwriting, "Rosee".  ;-)

Well, it's CLOSE--and how exciting to know that she took what we were teaching her here at home, took it to school and used it! ;-)

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Katya also went for a follow-up to her family Dr. today. He was happy that she didn't have a fever, and that the swelling is about all gone. But the ear that became infected *after*she was seen in the ER and started on antibiotics on the opposite side of her head from the swelling is still red and bulging in spite of being on antibiotics for over a week total. He prescribed an additional 5 days for her, on top of the several remaining she has on the current prescription, and will see her for another check up towards the end of that. Normally, I am not a fan of antibiotics for ear infections, but given how strange this whole case has been, I'm fine with "finishing what we started" so to speak . . .

Unfortunately, Katya pulled out a lot of aggressive behaviors at school again today during their indoor recess. I did talk with her Dr. about it and about the school's desire to have her medicated. He said one word--"NO."

He then went on to say that at this point in Katya's life and medical history he would only consider meds as a last resort if her behavior was so aggressive as to put her in need of institutionalization if she wasn't medicated. We aren't any where close to that, since she is almost never physically aggressive any more with Chad at home. She clearly is making forward progress (even if slow), and controls herself even when she is angry or upset most of the time. She has only hurt him 2 or 3 times since she got back home from her surgery in April of this year. Katya is still jealous of Chad getting any of my attention, and still clearly feels threatened much of the time by him. At the same time, we are seeing her face be more frequently interested and loving when she looks at him, and she will even sit and share a chair with him sometimes to watch a video together. Sometimes she seems to even want his attention. So I don't think we are any where close to the "line" Katya's Dr is describing.

We do know that the school is (finally) working on a behavior plan (which they were told around a year ago already that they needed to have in place), so I'm hopeful that once that is set in place, we will eventually see a reduction in those aggressive behaviors. I am also pondering a "home plan" keyed to how things go at school . . . I am thinking and praying about that one, and will also take suggestions if you have experience with some thing like that?

And hey--while I was typing this up, Miss Katya went and got a clean sheet of paper. And this is what she wrote--"I see Rosee".

My little gal . . . oh my little gal . . .

 



Needless to say, we are all about BURSTING WITH PRIDE around here.

Monday, December 10, 2012

Birthday Shopping

I have been pondering and trying to figure out a nice second gift for Katya's birthday, which comes right on the heels of Christmas. We know of course that she is getting a Lego set (what else?!) from us.

But I wanted one more gift to give her . . . I keep feeling drawn to something for her to use in her nightly Epsom Salt soaks that one of her Drs. suggested she have each night, as it helps her body get some more magnesium.

She already has upper case foam bath letters (and numbers) which have been a hit with her. So I have been browsing Amazon looking for ideas for Katya.

Here are links to a few items I found that caught my interest:

:


So . . . which one do you think she might like best?

And do you have any other suggestions?

Sunday, December 9, 2012

Affiliate Information

I had someone contact me to ask about the Amazon Affiliate link on the right hand side of our blog here. I have had other questions previously, so I thought perhaps it would be prudent to explain a little more about Amazon Affiliate links. I remember when I too would see them on people's sites and not really know for sure what all was involved.

First of all, Katya's expenses have been huge. We pay for our insurance ourselves, and her many needs have driven up our insurance premiums to sky-high levels. In addition, there are many things that our insurance doesn't pay a penny towards--such as basic dental and vision exams/needs. My husband works very hard, but there is just not that much work to keep up with the types of expenses we are having. We live very frugally, and do without a lot in order to make this work, but we quickly began to realize that we needed a second income stream. At this point, it does not seem like it would be wise for me to even attmpt to go back to work, and Katya's many medical needs would make that very hard any way.

So when we reached out to some friends and sought counsel, they encouraged us to do two things: First, to put up some Affiliate Links, and Second, to put up donation buttons. I have also begun selling books as I can in an Amazon store. All those things combine together to help.

So, if you want to do your regular shopping or special event shopping on Amazon, please do feel free to click on the Amazon Affiliate link or widget on the right hand side. That will take you into Amazon's site, and you can feel free to browse and shop to your heart's content. As long as you do NOT click out of Amazon's site after clicking in through Katya's link, any thing you might decide to purchase gets posted to her account. There is a small percentage on *most* purchased items that comes to us to help with her expenses. The price does NOT go up for you, and we do NOT know who purchased an item or where it is going. Your privacy is secure, and your pocket book is NOT affected by clicking on Katya's affiliate link. But it does help Katya! The way I look at it, it's a win-win situation.

I also recently was approved to be a Barnes and Noble affiliate. They handle that differently, and we are not allowed to post a widget or button on the side bar. However, you may remember that I did a post recently about some books we got for Katya from Barnes and Noble that were helpful to her. That post contained links to the books that were our affiliate link to Barnes and Noble. The same "click through" affiliate credit applies to many items that can be purchased through Barnes and Noble, and again, the funds will go to help Katya.

Please know that we realize you have many options as our blog readers, and we never, ever take any thing for granted--not any of the donations, not any of the purchases, whether through the affiliate links or my Amazon book-store. We strive to make wise decisions about stretching the money God has allowed us to have--whether through my husband's work or the income or donations that come about through this blog..

And as always, we welcome comments and questions from our blog readers! Your support has meant much to us through the last couple of years, and we don't take any of that for granted either, I hope!

thank you clip art

Saturday, December 8, 2012

What a Lovely Smile!



This smile fills my heart with joy . . . . I wanted to document day 7 of Katya's journey with the swelling, and when she saw the camera, this is what I got!! What a HUGE contrast from the days when she would frown and hide her face from us when we wanted a photo, and even try to physically block the camera lense with her hand.

We can see there is still some swelling, but it's much better than it was, and Katya's improved disposition (in general) lets us know we are going in a good direction.

And just for anyhow, I had to include this photo too. Any of my readers remember what Katya's hair looked like when she first came home?!

Contrast that to NOW.

 
We are still so happy that Dr. Dorafshar preserved as much of Kaya's hair as he could after he found out that was a huge issue to her! Like I told him at the time, "I don't know if Johns Hopkins has a patient sensitivity award or not, but if it does, you deserve it!" We wouldn't have this lovely head of hair if he had done what he normally did and shaved her entire head pre-op. Thanks to his willingness to work with her hair in corn rows, and my friend, Janet's willingness to come 2 hours one way I believe it was, to use her experience working in a Haitian orphanage to corn row Katya's hair, Katya's lovely golden locks were largely saved!
So thankful.
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Friday, December 7, 2012

Finally . . .

Katya woke up this morning looking the most like her normal self that we had seen all week! So it appears that Dr. Carson made the right decision to be patient just a little longer, rather than rushing to a hospital admittance for IV antibiotics--which was pretty much what the local med pros were thinking might be the most prudent thing to do. So hopefully Katya continues healing and we can be done with this episode!

You want more great news by any chance?? Sure, you do?! Ok, we are so excited to be able to tell you that Katys "Hip Talk" came in this week to the school, so if she can go to school next week, she should be able to start trying to use it!! If she can successfully master that, it will be such a hopeful door for Katya's future!

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On the home front, we are enjoying growing several of our own herbs this winter. We have basil, cilantro, and parsley growing. Two of them are nicely potted in pots I found at the thrift store. The other still awaits a pot. I am especially enjoying the smell of the basil . . . oh it smells so good! Growing our own herbs is very satisfying, and makes me long for one of those yummy Ukranian pizzas liberally covered with fresh snipped herbs that Charity and I enjoyed so much when we were there!

Like this:




And the iced tea loaded with mint leaves . . .




And then there were the unique bread sticks . . .



And the interesting menu choices . . .

Don't you want try the Pizza with tuna, corn and onion?! (I have to confess that neither Charity nor I brought ourselves to try that while we were there . . . there were always choices that seemed much more appealing to us!)



 
Yes, a chunk of our hearts are still in Ukraine. . . God willing, someday . . . I will go back to help some how with orphans. In the meantime, I stay busy taking care of Katya and my other kiddos.


Thursday, December 6, 2012

Good News

Katya's fever seems to have broken yesterday evening. Unfortunately, she woke up around 12:45 AM whimpering and holding her head where the swollen area is. We got Motrin into her, settled her back to sleep on the couch, and since we were not wanting her alone, Charity kindly offered to sleep with the recliner pulled up right tight to the couch so Katya could hold her hand if she needed or wanted to.

It took Katya a long time to go back to sleep, and yes, she kept reaching out to hold Charity's hand. I think it must feel so comforting to her to have that human connection when she doesn't feel well at night, instead of whatever loneliness and abuse she went through before!

We had a very interrupted night between this, Paul getting up early to go get a new thermometer for me, and then he left town at 6:00 AM with Todd, heading to WVA for Todd's seasonal job location. Multiple wakings resulted from all this for both Charity and I. Neither of us feel too perky, although after I got up, I did send Charity up to her bed to sleep till lunch time. Maybe I can catch a nap later today.

The family Dr.'s office called and said Katya's labs yesterday show good improvement for every area except her SED rate. That was the same as Sunday. So between improvement showing in labs, and Katya's fever being gone, everyone is hopeful that even though the swelling appears to be really not significantly better that good things are happening in terms of healing.

Katya has been pretty weepy and irritable much of today, so we are doing a lot of snuggling and rocking again. I'm grateful that does seem to quiet and comfort Katya.

It means that many things I need and want to get done are yet again getting pushed to the back burner but it is just the way it is. In case anyone wonders, it's things like this that keep our house from being pristine and so on.  There's just no fancy way to put it . . . parenting Katya takes a LOT of time and energy. But  . . . it beats the nights I used to sit up for hours staring at her sweet face, crying and praying and wondering **why** God was telling me so clearly that she was meant to be our child, and yet holding the door shut for that. Eventually, clearly, God DID open that door . . . and we are so very grateful to have our little Katusha with us . . . no matter if things are piled up around our heads!

We chip at things here and there . . . trying to get done what we can in 5 minutes here and 10 minutes there. We finally got the few fall items down today, and packed back into their tote. Maybe tomorrow we can put out a few winter/Christmas touches ?! Here's hoping so.

In the meantime, the cloth Christmas bags that I got done before all this craziness hit are still for sale. Check them out.

Katya--Day 5--photo by Charity (and Katya still showing remnants of her lunch around her mouth--whoops!)


Thank you for continuing to pray that she will be restored to full health.


Wednesday, December 5, 2012

And Dr. Carson says . . .

 . . . that he wants to give Katya two more days on her current antibiotic before moving forward to new steps of action.

The exception of course being that if her labs that were drawn today come back showing something alarming OR if Katya's condition worsens.

The Lab has orders to call Katya's PCP's cell phone tonight already with the results, and then he will notify us if they are alarming. I am praying so hard that they will show some sign of improvement, or at least nothing alarming. I think I am fighting a virus or something . . . feeling horrid and dizzy and keep having trouble from time to time with almost losing my balance. I'm in no fit shape to try to drag Katya to our closest Children's Hospital, so it feels like her labs need to be "safe" for sure.

So . . .if Friday rolls around and she isn't showing any signs of improvement, then Dr. Carson wants Katya to have a MRI with and without contrast to try to determine if there are any signs of infection in her brain.

Prayerfully, hopefully, all will be well.

In the meantime, I'm snuggling and rocking with my little gal as much as I can. I read years ago in a Mothering magazine that it was believed that a large part of the key to helping a child heal was plenty of physical contact with their parents. I don't know if that is true or not, but I have never forgotten that . . . and especially with Katya's history of deprivation of touch/cuddling/nuturing especially when she did not feel well, I think it's really important on so many levels to give her that. When I can't physically do it, often one of the girls or Paul fills in till I can get back to her.

So, we are doing all we can right now to give Katya's body a chance to try to fight off whatever this is. Thank you for continuing to pray for her. She's in God's hands, Dr. Carson's "Gifted Hands" and her family's loving care. There's no better place for her to be right now, it seems to me.

Keep Praying

Katya saw her Dr. today at 10:45 AM.



Her temp was 101.5--marginally higher than yesterday. Temps generally tend to climb as the day progressess, so the fact that it was higher than her afternoon temp yesterday was not good. Her swelling is about the same as Sunday. Maybe just slightly better? It's hard to tell.

Her Dr. did not feel like he had seen any improvement from yesterday to today, and sent her for more lab work to be done, hoping to have it done before his 3:00 pm phone appointment with Dr. Carson.

Even though he labeled the lab orders "STAT Before 3:00 pm." the staff at the child lab did NOT tell us until AFTER they drew the blood that the earliest they would have the results back would be 6:00 pm tonight AFTER the Drs office is closed.

I put a phone call in to Katya's Dr. to let him know that. I am unhappy about the situation, but trusting that God has all of this firmly in His control, and that He knows exactly what is going on and what needs to be done.

Since both Katya's family Doctor and Dr. Carson are believers and pray to God, I am asking that any of my blog readers who pray will join me in praying that God gives them both wisdom that can only come from Him. God can speak clarity into their heads that will enable them to make the correct decisions for Katya WITHOUT the lab work results.

Knowing this gives me peace, even in a crazy situation.



 
 
All our thanks to those who have been praying for our Katya . . . We appreciate it so much. Some of you have told us that you are sharing her story and asking others to pray, and we appreciate that too!
 
(Photos taken today by Charity)


Tuesday, December 4, 2012

Pray for Katya



The photo above was taken on Sunday before we went to church. Katya woke up with her left eye swollen as you can see. That is the eye that was relocated during surgery, so we were concerned enough to email her plastic surgeon, Dr. Dorafshar, a photo of Katya and a note letting him know we had seen very slight swelling off and on during Thanksgiving break (and just assumed it was probably related to the allergies she deasl with alot), but when she woke up looking so swollen, we felt it was something more and wanted his input.

He was prompt to email us back and let us know he was concerned too, and that she should see her family Dr and possibly have antibiotics, and if she didn't respond to that, then a CT scan. We were fine with that plan, and went off to church.

By the time we got home from church, the swelling was considerably worse, having spread down to her cheek bone, up to her forehead, and around the side towards her ear. She also flinched horribly if even the lightest touch was made to any of the swollen areas and would jerk away and push our hand away.

We emailed Dr. Dorafashar again, and he felt that she needed seen immediately and so did we, so off we went to our closest children's hospital. The triage nurse was concerned, and made sure we didn't wait very long in the waiting area.

Long story VERY short . . . the ER staff was concerned. A CT scan and an ultrasound of the area were done. Dr. Dorafshar ended up calling the ER repeatedly throughout the evening and into the night from ENGLAND  after he got my text alerting him to the desire of the ER staff to speak with him (calling during what was the middle of the night for him there too, God bless him!). The cooperation between Dr. Dorafshar and the ER staff was impressive to see as they brain stormed together on what could possibly be wrong and how to help our sweet Katya.

Katya was an amazing trouper through it all. She cooperated beautifully with everything, and was busy getting the whole staff wrapped around her little finger, as she seems to do without even trying.  Even when they came in to draw blood, and she clearly recognized that they were going to do that and was anxious, she still tried hard to cooperate. The staff they sent in for the draw was fabulous and once they realized she liked to help with her own care, they allowed her to wipe her skin with the alcohol wipes etc and I really feel that did help reduce her anxiety and make her more cooperative.

All Katya's vital signs were fine--but the labs started coming back showing WBC and other markers for infection and inflammation being elevated. So they finally diagnosed Katya with possible "cellulitis" around the eye and a "possible abscess in the early stages", based on what they were seeing on the CT scan and ultrasound.

There was some talk about admitting her to the hospital, but since all her vitals were fine, they decided to let us take Katya home, with a copy of CT scan and ultraound, and then have Dr Carson assume her care in conjunction with our family Dr.

We finally got home right around midnight, got Katya a fast bath and into bed. Yesterday I overnighted the CD of the scans to Dr. C's office via Fed-Ex, and got in touch with our family doc to set up an appointment for a vital signs check today per the ER.


Good thing I did. On Sunday all Katya's vitals were pefect. Today, despite two days of antibiotic use of a broad spectrum antibiotic, Katya's swelling was not markedly better, and in addition, she had a temp of 101.3. Our family Dr. faxed all the results of every thing (labs etc.) from Children's Hospital to Dr. Carson's office and asked for a return call after he evaluated them, and sent me home with Katya with a new prescription for a different type of antibiotics, plus strict orders to keep my cell phone on me at all times, so that he could reach me as soon as he got ahold of Dr. Carson.

Sadly, Dr. Carson was out of the office today due to a personal/family emergency. Our family physician, Dr. J. was finally able to speak with a resident. An appointment for 3:00 pm. has been set up for Dr. Carson and Dr. J. to speak tomorrow. In the meantime, we are to start Katya on Augmentin, which they are hopeful will do better at knocking whatever this is than the other antibiotic was . . .  We are to take her back to the Children's Hospital ER if she detoriates any more this evening/overnight. I am fine with that plan of action, as the Children's staff had already told us that if they suspected anything involving the brain, Katya would be transported to Johns Hopkins Medical Center so that Dr. Carson could assume her care again in person.

Katya has spent the rest of the afternoon chilling out in the recliner watching a Cedarmont Kids DVD of Christmas Carols.

She finally took to just crying and screeching. No matter what  . . . I finally asked her if she has an  "owie". Katya signed "yes".  So I asked her to show me where her owie is. She pointed tenderly to her forehead above her eye . . . She has Motrin on board, and we are asking for prayers.

She will see our family Dr. again in the AM (unless she is in the hospital) for another evaluation so that he has fresh info to relay to Dr. Carson about her condition.

Here's a photo Charity took of Katya just a few minutes ago. Pray for our little gal, would you?? It breaks our hearts to see her suffering yet again.

Saturday, December 1, 2012

The Christmas Support Group Party

Charity was asked to play some Christmas music for the children at the support group party today. She thought it would be more fun to have her friend, David, play with her as well, so she asked for and got permission to have it be a duet instead of a solo.

Charity said, "I am not used to hearing the room get soo very quiet, so I think they enjoyed it!"

I would say so too.




(Video compliments of Kristina)

Katya woke up feeling perky, and ready to go to the party.

Does it appear she is enjoying herself here or what?!


 
Hopefully more photos another day . . . right now we need to finish cleaning the house up a bit and then take Charity to a violin performance tonight that her teacher is playing in. He was hopeful that she would be able to come. Charity certainly deserves it after pulling a huge load here at home Thursday and Friday while Katya was out of town with us. Now it's Charity's turn to get some attention from her Mom and Dad, and a little fun outing!