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

Dr. Ben Carson on Katya Dueck

Thursday, January 31, 2013

Orange Spice Cleaner Recipe

I am having people on my Facebook asking about the "recipe" I have for my cleaner.

I have to say, no real recipe!

But I can tell you what I did! It's so easy!

Start with a clean jar--I used a one qt canning jar. As we ate oranges over a 24 hour period, I just stuffed the peels in there. Layer after layer. Then I added one whole cinnamon stick, and about a Tablespoon of whole cloves. Covered the whole mixture with white vinegar, and capped the jar with a lid and ring.

In about 24 hours, I had to top off the jar as the spices and peels had seemingly absorbed so much of the liquid that the jar was becoming less full than it should have been.

It has not quite been a full week yet, and already the mixture smells wonderful, and like I will soon want to start using it!

A few years ago, there was a lovely formulation that we were given a few times by relatives from a company that did essential oils. Spicey and clean smelling, I used it as a cleaning agent for house hold cleaning, and I would also throw a small splash of it into my load of socks and underwear and it always left every thing smelling so clean and fresh!

I have missed that clean smell, so one of my first thoughts for this liquid after it is properly steeped and then strained is to use it in my wash water. ;-) I also plan to employ it as a household general cleaner.

Currently, we have already started a second quart of it steeping on our kitchen counter!

Now, some of my readers kindly shared comments on my previous post about this, that I thought you might be interested in as well.
Natalia said:  My grandmother used to make something like that cleaning product, but she used lime peels instead. Orange peels were used for sweets. Good memories :)

Tabor said: I mix citrus peels, keep them in the freezer, then salt them for a half hour, then cover with white vinegar. 2 weeks works for super cleaning, a month will knock out the vinegar smell.

I also dilute mine, half vinegar, half distilled water. Works just as well, goes farther and doesn't wreck the spray bottle as fast.


I'm liking the idea of using lime peels when we have limes . . . I even wondered about the lemons?! This could get very fun and interesting color wise . . . .

I may tinker around with my spices, but so far I'm happy with how t he first jar is turning out smell wise. It smells more and more spicey as the days go on.

So if you do this, or something similar, want to do a mutual linky? Link to my post in your post, and leave your post link on this post. I'd love to see what you are doing!

YAY for homemade cheap cleaners!

(PS. Charity showed the jar to Katya yesterday and asked her if she wanted to eat some! She wrapped her arms around her plate and pulled it away from Charity and clearly indicated NO WAY! It was so cute! And again showed what a smart kiddo she is!)

Tuesday, January 29, 2013

Blessings Part 2

After eating lunch that was so kindly provided by our new friends, Paul took the kiddos back to explore some more of the gardens.

Katya continued to be very alert and interested, and the only thing that really seemed to upset her in the garden were the caged macaws.

She was NOT impressed with those birds favorably AT.ALL.

The other kiddos enjoyed the gardens too. I think it was a much needed "promise of spring".

Charity did a good enough job documenting the trip there that I felt like I had been able to enjoy it as well!

You can read more about the excurison from her perspective over on Wares By Cherry. Enjoy all her lovely photos!

--To Be Continued

Sunday, January 27, 2013


I was blessed with a chance to exercise an unusual amount of creativity in the last 48 hours. While Paul had the kiddos yesterday, I dug out the doll quilt I had started working on over two years ago for a niece.

The colors are a bit off due to the poor evening lighting . . .  but it's all soft, cozy flannel with pinks, greens, and Raggedy Ann and Andy fabric. Most of the fabric was purchased from the remnant bin, here a piece and there a piece. The exception was the Raggedy Ann and Andy fabric, which came from Hobby Lobby a few years ago.

At first I was going to just put the two layers of flannel together, and let it go at that, but it seemed like it was missing something. So I dug in my stash and pulled out a bag of quilt batting. Originally boasting a "special price" of $10,99, I found the brand new package for $2.99 at our thrift store one day and carted it home to the stash. Good thing! It worked perfectly for this project. I added in some comfort "knots" in the form of pink floss from a huge collection of embroidery flosses we purchased once at a yard sale for 25 cents (all nicely and neatly wrapped around cards and stored in a plastic organizer!). When my family came home, the project was complete except for the binding! I can't wait to finish it and then hand it off to the little lady for her dollies. ;-)

The other project was born after I saw a photo floating around on Facebook with the idea of covering oranage peels in vinegar and letting soak for awhile, then straining  and using the orange oil infused vinegar to clean your house.

Charity and I had our minds go churning, and we decided to try adding a whole Cinnamon stick, some cloves, and all spice to the mix. It looks lovely right now and I will be eager to see what it ends up looking and smelling like! If it works as well as I'm hoping it will, I suspect I will be enjoying some lovely scented cleaning product for peanuts price-wise. ;-)

It's good to be able to feel creative again.

What are some of your favorite creative things to do?

Saturday, January 26, 2013

Blessings Part 1

Things have been rather challenging the last while for our family, for various reasons. Today was a nice break . . . a day full of blessings! First of all, it was my official "Day of Peace And Quiet". This is a tradition we started a few years ago when there was no loose money for celebration of my birthday. I suggested that Paul take the kiddos for the day and give me peace and quiet and a chance to work on my projects. He did--brave guy that he is--and thus a new tradition was born that I do believe is quite nice! So, since it was my day for peace (oh wonderful peace!) everyone got shooed out this morning with a packed lunch and snacks. Todd wanted to stay in town to job hunt and work on his college assignments, but Paul took the kiddos to pick up Charity from her violin lesson, and then they went on to spend their day. I had tried to explain ahead of time to Katya that she would first get Charity from her violin lesson, then go to see flowers, and that she could smell the flowers, but not pick them. She seemed really excited here at home, and even in the car, she seemed amazingly happy! When her "rival" lovingly offered her his hand, she actually took it and held it for a little bit. (Please note that the ackward angle her arm is bent at comes from her dislocated elbows limiting her range of motion).

When Katya is happy, we all feel happy!

At the botanical garden, Katya was so happy to see the flowers!

And smelling them was even better!

And then she wanted to walk around and smell the leaves too!

Time to chill out for a bit . . . 

And then while they were standing there watching the trains . .  . Kristina heard people speaking Russian!

And lo and behold, here were two ladies from Russia, and one from Ukraine at the gardens with their children!

Lo and behold . . . when Paul began talking to them . . . it turns out that the one young lady had been reading Katya's blog over the time we were adopting Katya. She burst into tears, and hugged Paul with great emotion when she realized she had just met Katya in person!

With their permission, Charity took some photos to post on the blog.

The lady on the left of the photo is the one who had been reading Katya's blog and was so happy to meet her in person. The middle lady was also from Russia, and the lady on the far right was from Ukraine. Katya seemed quite skeptical especially of her--we are guessing that it was because she looked a fair bit like some of the caretakers in her orphanage looked.

When something like this happens, you definitely realize that your child's story can have a far broader reach than you realized . . . and we felt that we were seeing God's hand in how our path crossed with theirs!

The next thing Paul knew, the ladies told him that he was to take the kiddos to the cafeteria because they were paying for lunch! WOW! What a sweet gesture!

Katya chose a big salad, and ate it with gusto!

Chad chose a peanut butter sandwich that delighted him fully!

My family parted ways with our new friends after exchanging contact info. I think we will be having more to do with them in the future! Looking forward to it!

Katya enjoyed the gardens. And in an clear step of forward progress, she actually was calm and happy about the Koi fish! She watched them a long time, pointing and evidently counting them, the way she was acting. Charity explained to her that they were like our gold fish at home--just bigger.

Katya used to be horridly upset about even fish. To have her calm and happy about them was so nice!

And the blessings went on the rest of the day  . . . but I will need to continue the blog post another day. Now my little gal wants her Mommy to rock her before tucking her into bed, and yes, that is a very important nightly ritual!

Friday, January 25, 2013

Happy Snow Day!

Around 8:30 AM this morning, the snow began to fall thickly from the sky. The school has called and asked us to do a two hour early pick-up for Katya.

I have happy plans for when she gets home so that I can continue the other kid's education and still meet her needs!

We are going to pop popcorn (something Katya enjoys eating) and nestle down together to watch the "Drive Through History" episodes that I just found out today are streaming on Netflix! Katya will hopefully be happy being held, and the other kids can keep on learning.

In other happy news, my in-box contained a special offer today from Barnes and Noble for me to share with my readers! If you have been thinking about purchasing a Nook Simple Touch, today is the day! With the purchase of a Nook using your MasterCard, you will also get a $30.00 gift card to Barnes and Noble! Just think of all the books you could purchase to start reading with that! FREE $30 Gift Card w/ the Purchase of NOOK eReader when you use your MasterCard. (Valid 1/25 - 1/31) While I'm thinking that popcorn and videos with my kiddos makes for a happy snow day, a Nook and good books could make me happy too! What about you? Happy Snow Day, however you choose to enjoy it!

Thursday, January 24, 2013

And We Plug Onward

I was jolted awake this morning at 5:22 AM when Katya's school called to relay the message that school was cancelled for the day due to semi-icy roads. OK . . . so in spite of our best efforts to get her back into school for a few days, we couldn't!

I'm hopeful that her health AND the weather will be such that she can go to school tomorrow. She has been home from school all week except for a few hours on Wednesday (delayed start by two hours due to the extreme cold our area is having).

Unfortunately, Katya's lovely golden hair continues to fall out over the area where the hematoma is. She has lost so much now that I don't think I can do anything to hide it when combing her hair any more. I'm sad about that. She has so many things stacked against her, one wonders why hair loss has to enter in as well?! I just keep praying that it stops soon . . . every day it's worse.

On the good news side, a dear friend came over today and spent a few hours visiting with me and helping me to deep clean my kitchen cabinets. Deep cleaning far too often takes a back-seat due to the amount of time Katya needs, both emotionally and medically. When my deep cleaning gets piled up on me, I hate it. And lately I've been struggling a lot to keep my head focused and get anything extra done. Having a friend here helped a lot . . . we didn't get near every thing done that I would have liked to do but my friend gave a huge boost and hopefully we can soon finish up the last couple of drawers and cupboards ourselves.

Interestingly enough, I had tried to explain to Katya ahead of time that a lady was coming, that she was Mommy's friend, and that Katya could sign and tell her "Hello". When my friend got her, I introduced Katya to her (she may have been around her a few times but only briefly prior to this) and Katya went right up to her and gave her a hug! Needless to say, I was shocked. I am taking that as a good sign that she understood what I was trying to explain about my friend being someone safe and friendly! Normally, Katya is very alert and nervous about a new person in the house, and can be quite anxious--certainly NOT willing to just walk up and hug them! (And for those concerned about attachment issues . . . right after Katya hugged my friend, she turned around to me and wanted a LONG cuddle, so I no, not worried about attachment . . . it was just her way of trying to acknowledge that she understood the woman was a friend, not a foe, I think.)

 Katya eating breakfast yesterday morning before going to school.

Katya playing Legos today. The living room window sill is almost completely full now of her creations, and no one is to ever so much as breathe on them but her!

Wednesday, January 23, 2013

Love Must Be Soft and Hard

Loving a medically needy and fragile child means that you must mix both the soft and cozy love with the "Hard" or "Tough" love.

Hard decisions must be made. Again and again. Scary things have to be gotten through, and you must grit your teeth, and walk with your child through them.

While I will respect the parents who go off and leave the professionals to deal with the crying, screaming child, and then come back later to comfort, that has never been my M.O. with my kiddos. And most especially with Katya. She would never understand if I walked off and left her with strangers. That means no matter how tough it is, Mommy is there if she is conscious.

Like I told Dr. Carson the day before her massive surgery, "I'd be right there in the corner of the OR if she needed me, like it or not. But she'll be asleep when I walk out of the OR, so she doesn't need me right then." He looked just a trifle startled, I thought, but he agreed that Katya did need her Mommy when she was awake.

And thankfully, his procedure is to have the parent's carry the child into the OR and stay with them until they are unconscious, then walk out. He "gets" that a parent is comforting to a child, and due to his method, Katya never needed to have ANY meds or IV's pre-OP at her two surgeries at JHH. IV's are inserted once she is put to sleep by mask.

Not everyone else "gets it" on the same level as Dr. Carson. And, in spite of several attempts by others to boot me out when performing procedures on my daughter, I have never left her. No matter how painful it is for me, I don't go. Because she wouldn't understand it. And as tough as it is for her to go through it with me there COMFORTING, I shudder to think how she would take it if she were separated from me.

Probably one of the most "memorable" attempt at kicking me out was when Katya was taken up to PICU around 1:00 AM Sunday night/Monday morning when Katya was in acute respitory distress from anaphaletic shock, as well as severely dehyrdated and suffering from a clogged surgical drainage tube.

After she was a bit more stable in terms of breathing and swelling, the PICU Dr., Dr. Karina, felt that she needed to perform a spinal tap to definitely rule out meningitis. At my insistence, they assured me that they would "snow" Katya so heavily with drugs that it would be "the most comfortable thing she goes through in PICU". Nevertheless, this Mommy wasn't leaving the room. They attempted to shoo me out when they were ready to start.

I told the Dr. I was not going. That Katya might need me, and I would be there. Dr. Karina told me that Katya was sedated and didn't need me. I told her that might be, but just in case, I was going to be there for her. Dr. Karina again told me to leave. I told her that I was not leaving--that I would sit in the corner, and I would even turn my back if that would make her feel better, but if Katya needed to hear her Mommy's voice, she was going to hear it.

There then ensued a long and tense "look-off" . . . with Dr. Karina standing, masked and gowned on one side of the bed, and all the authority of JHH behind her, and this extremely exhausted and worn-out, dishelved Mommy, standing and looking right back at her from the other side of the bed. I remember thinking as this long "looking" went on, "If you want me out of her, you are going to have to call Security to DRAG me out. Is that what you REALLY want?!"

Let it be said that Dr. Karina broke eye contact first and as her eyes dropped and her head bent just a hair, she said, "OK. Go sit in the corner."

And so I did. And I didn't look. But every time Katya whimpered, SHE HEARD HER MOMMY'S VOICE. And she would quiet right away.

So . . . my love for her was fierce and strong and tough. And I will never, ever regret that I insisted on staying with her. No matter how hard it was, I know I made the right decision for her AND for me. It may not be the right decision for every parent and child. That's OK. You have to make what is best for your child and you. But if I had done what was EASIEST right at the second, it would have been to walk away . . . not to cause ripples and not to stand up for my right to be there with my child. So I have to make sure I don't confuse "easiest" with "best".

This applies to many areas, not just medically . . . We are still feeling our way in a lot of these decisions and don't always know the right thing right off the bat. I'm thankful for friends who dialogue with me, for blog readers who ask gentle questions, and for those who speak into our lives in various ways. I'm also thankful that we are getting to a great level of comfort where we can dialogue with Katya's team at JHH and challenge, and question without feeling too stressed about it. Familiarity and lots of contact has helped make it a comfortable working relationship.

We always try to prayerfully consider ALL input and then make wise and careful decisions for Katya and our family. We spend much time trying to look at all angles--what impacts not only Katya, but also how it will impact the rest of our family, especially the children. Many aspects need to be considered when making a decision, and lots needs weighed and pondered prayerfully.

Have you ever had to have "tough love" with a child of yours? If so, what factors did you consider when making your decision?

P.S. Just so you know . . . the last CT Katya had last week needed to have contrast, which meant an IV had to be started. Our family Dr. wrote right on the order for the CT that Katya was not to be separated from her Mom at any point in the procedure! I didn't know that a Dr. could do that, but he said he could and that they would have to obey his order. How cool is that? Just a nice thing to know for the future . . . 

Tuesday, January 22, 2013

Poor Katya Doesn't Get a Break

Poor Miss Katya. She doesn't get a break. I took her back to the family Dr. today for a temp check and since her temp was 99.4 he investigated. Sure enough--now one of her ears is badly infected--the other shows signs of healing from an infection. And when she was in to him just this past Wednesday, she had NO infection in her ears.

I'm guessing that the ear infection may have been why she didn't have a good night on Sunday and kept me up for several hours. Poor kiddo! Usually she seems to communicate to us when she is in pain with her ears, but we couldn't get anything out of her that night, no matter what we asked her. So maybe it just felt horrid but wasn't actual pain? I can hope so. She did at least sleep when I would hold her, and towards 4:00 AM was in a deep enough sleep I could lay her down on the couch to sleep, and she slept till morning, so hopefully it wasn't too bad for her. It's so hard to know something is wrong, but not know WHAT is wrong.

So the decision was made to keep Katya home from school today, and then send her tomorrow if she seems to be feeling better. She had music/respite anyway, and would not have had much time at all in school by the time I would have fed her lunch and gotten her back to school.

She seemed tired and not feeling well at respite, so I am glad I made the decision to keep her home today. Hopefully she is feeling better tomorrow.

Also, after a lot of dialogue back and forth with her Johns Hopkins Surgeons and her family Dr. the decision was made to keep Katya out of recess for her safety, and also from gym except for approved activities that are less dangerous. Poor kiddo is going to be really upset . . . she LOVES her recess and gym and I'm not at all sure she will understand that it's safety issue that is preventing her from going out to play. Please pray for the school and us as we try to figure this out and explain it to her. Her Drs are saying at least for the next couple of weeks, as they have to make very sure she doesn't get another hematoma in addition to the current one.

Since her temp has come down from what it was, her hematoma seems less painful, and she has an ear infection to explain the current low-grade temp, we don't need to presently take our Sweetie back to Johns Hopkins to see Dr. Carson and Dr. Dorafashar right now. I am thankful for that.

In happier news, Katya has been making lots of great "Oh" "Oh" sounds the last few days! She does them in a full voice . . . it's awesome. ;-) I continue to pray she will learn to speak . . .

Monday, January 21, 2013


With Katya being rarely able to go to school and our once a week 3 hour respite, due to illness and holidays breaks the last 3 months, our family has been wearing pretty thin.

When one family member sadly said to another, "Why don't you ever have a smile on your face any more when you look at me? You only smile at Katya" I knew we badly needed help and support!

Thankfully, some others realized it too, and plans were set in motion to try to provide some relief.

First of all, with approval from Dr. Carson's office, we were able to take Katya to the support group on Saturday. Charity was paired with her to guard her as much as possible, as that was the big concern from Dr. Carson--no bumps of any sort on her head allowed!

Katya seemed happy to get out of the house to do something again.

Even though I cried during the devotions for the Moms about "Faith", it was a quiet cry. Goodness knows I'd done enough of the "ugly crying" the last few weeks to last me a for a long time! So quiet crying equals improvement.

After the support group, we came home and did some badly needed Saturday cleaning. And around 4:00 or so, the Director of the support group showed up. With her came a bag of goodies, and a big plastic doll house and a box of accessories. We had tried to prep Katya for this, and she seemed fine till she realized we were going out the door. Then she burst into tears. We quickly explained to her that we would be back in time to give her a bath and put her to bed. She cheered up and went back to playing. She was happy the whole time we were gone.

As for us, we went for a drive to a nearby town, and went to JoAnn's to look for some fabric Charity was needing for a skirt. Then, we took the money that we were given and told to go eat out with, and we went and did exactly that. It was, frankly put, WONDERFUL.

We ate leisurely, visiting and enjoying visiting with our other kids. I can't tell you how wonderful it was.

The four hours were so entirely short, but it was enough to start to recharge our emotional batteries a little bit. We all came home feeling the better for it.

Katya had a blast while we were gone. She had decorated a large gingerbread cookie with frosting and candies, played with the doll house, listened to books, and then enjoyed her favorite Cedarmont Kids video while munching on popcorn with L. She was happy. We were happy.

The support meant a lot to our family . . . , and I am so grateful for the ministry here in our town that cares so much about special needs people and their families! I'm grateful for how they were the hands and feet of Jesus to us Saturday!

There are some other things in the works now too that were set in motion by caring people on Friday/Saturday. I don't know exactly what all or when . .. But even though we all still feel stretched pretty thin, knowing people are caring and are looking for something to do to help gives us new courage.

Katya has been losing her lovely golden hair.

Unfortunately, that shiny white is a bald spot. It's even larger now, as that photo was taken several days ago.

Dr. Carson's office said that sometimes with scalp swelling they see hair loss. We are hopeful that the loss soon stops, and lovely new hair will grow.

Friday, January 18, 2013

Giveaway Announcement!

The drawing for the #1 package was done by Chad.

And Kristina did the drawing for the second option. She took her job very seriously.

And Shea is the winner!

Will Jen and Shea please contact me with their mailing addresses so I can ship their items?!

Thank you all very much for participating! I've enjoyed doing the Giveaway! I only wish I could have given every one of my readers something. . . .

Even though I can't give you all something tangible today, I can give you some good news! Even though Katya is still running a fever, she is still seeming otherwise fine. And tonight during her bath she started saying something new--"Oh". "Oh." "Oh." She was clearly pleased with herself, and did it over and over quite a few times throughout her bath. I'm praying that it STICKS in her head and does not "glitch" away like some other things she was able to say and then evidently lost the ability to keep saying them.

Thursday, January 17, 2013


Katya's medical needs this week have utterly swamped me. First there was the trip to Baltimore on Sunday/Monday. Then Tuesday night she didn't have a good night at all, complete with two out-of-the-norm accidents that kept me busy most of Wednesday washing and drying laundry. Before I was even done with that, a phone call at 3:10 p.m. from the school alerting me to the fact that Katya had a temp of 101.6 and needed her Mommy.

When I showed up at the school, I decided that I wanted to talk with our Dr's office and see what they thought. The office told me to come straight in, so I went. Ended up not getting home till after 7:00 pm as there were a lot of tests that needed to be run, and then we got sent to the hospital for a CT scan with contrast.

My flat and non-emotional telling doesn't begin to touch the tip of what all went on, but I am emotionally and physically wiped and it's all I have right now.

Needless to say, I haven't been able to follow through with the whole drawing announcement for the Giveaway, but I haven't forgotten and I will do it as soon as I can.

In the meantime, please keep our sweet Katya and us in prayers. She is still running a fever and at home. The verdict seems to be that lacking any signs of anything else, the fever and elevated white blood count etc. are related to the hematoma. According to her plastic surgeon (who is our Star Doctor right now) this can happen sometimes.

The only thing to do is try to support Katya's immune system through rest, fluids and good nutrition, and monitor closely for infection. Thankfully, Katya's temp today has overall been lower than 101 and she is eating and drinking OK, and seems to be stable.

Pray for our family. Many times when I ask you to pray, there is much going on far beyond the scope of what I post. That is the case tonight again.

Tuesday, January 15, 2013

Ben Carson, MD and Miss Katya

Katya was very anxious yesterday while waiting for Dr. Dorafshar's PA, to examine her. When Madison came in, she was so gentle and calm with Katya, having me be the one take out her hair band so they could feel better, and  even letting Katya see her hands had nothing in them before she gently touched her "owie", that Katya erupted in giddy relief once she left the room. You can see more about that at Charity's blog post.

Finding that no one had hurt her, Katya was in fine spirits when we took her to eat a hasty lunch before rushing over to the 1:00 PM appointment Dr Dorfashar's office set up with Dr. Carson. after they determined that they did not feel comfortable diagnosing the squishy lump on Katya's head.

Katya choose chicken noodle soup and some salad bar items (plenty of beets--one of her favorite foods!) and when she had polished all that off, we offered her a Edy's Strawberry fruit bar, and she downed that happily too. Then off we went to see Dr. Carson..

There was some snafu when we arrived--somehow the request for a prompt "TODAY" appointment had not gotten into the computer system. I was treated a bit dismissively by the registration clerk--not something I am used to--and she said that she would write a note and send it back to see if one of his assistants could come out to see us. Knowing that Dr Ds office had said Dr. Carson himself was going to see Katya, I decided to be a bit politely aggressive about the matter.

So Paul went back up to the 8th floor to talk to Dr. Dorfashar's office manager and explain the situation to them. They made a fast phone call, and told Paul that Dr. Carson WOULD be seeing Katya.

Sure enough, Paul was hardly back down stairs and we were soon called back to an exam room. Katya entertained herself playing with an education app on the IPad (no she did not want her hair band back in!)

 and hardly even cared when  Dr. Carson came in and with his "gentle-gentle touch" was feeling her head. Granted, that man has the lightest of lightest touch that you can imagine for something like this--I have observed his very light touches on Katya's head before, and often marveled that he could tell ANYTHING by how lightly and little he touches.

After he diagnosed her as having a probable hematoma, that given the fragile state of her skull post-op he said could come from a bump so light and minor that we wouldn't even know she had gotten it, OR from a bit of her surgical hardware wiggling loose and nicking her internally, Dr Carson settled down to get an update on her general development.

Dr. Carson is always so realistic yet very, very positive and full of hope about Katya and her progress that it is always a blessing to speak with him. I would have to say as a Mom that his approach works . . . We nearly always walk out of his office feeling encouraged and strengthened to fight onward for our Katya.

Yesterday we discussed the report from the NueroPysch eval Katya had done. We shared that Dr. A., the NueroPysch, stated that she was truly amazed after testing Katya, and how we had laughed and told her that Dr. Carson said the first time that he had met Katya that he believed she was going to amaze the world someday, and we guessed that had started. Dr Carson chuckled gently and said, "And she isn't done yet!!"

He also asked if she was doing any speech yet, and we shared some of our frustrations with that area. However, when we asked Katya if she could make several different sounds she quickly and promptly made them for Dr Carson. He was delighted and told us that it was clear that her circuits were working--that she could hear what we were asking her to say, process it, and spit out a similar sound. He then smiled and said, "I still think she will talk some day." He promised to pray with us that she will begin to speak. How extremely cool and what a blessing!!

I am thankful that we were led by God to Dr. Carson for Katya's care. So thankful. It sometimes blows my mind that my daughter--considered the lowest of the low almost in her country of birth, is now cared for lovingly by the greatest minds in the medical field.

She is truly, lovingly cared about and cared for by both Dr. Carson and Dr. Dorfashar. We count it a privilege to have learned to know both of them, and are grateful for the great team they make for our sweet little Princess Katya.

Katya was so engrossed in her IPad activity that she hardly noticed Dr. Carson telling her good-bye. . .  He said he is looking forward to seeing her at her one year check-up in March or April. Hopefully, this hematoma resolves on it's own and we have no further adventures requiring a trip to Baltimore before her 1 year check-up.

Monday, January 14, 2013

Hematoma, and Home

Long story . . . but Katya was diagnosed by Dr. Carson as having a hematoma. She needs just watchful waiting at this point. Nothing to be done right now, except hope and pray it heals on it's own.

We got home soon after 10:00 pm and are so thankful for all the prayers and support . . .

Go see Charity's blog for photos/details until I can get a more detailed blog post up here.

Thank you.

Sunday, January 13, 2013

Hitting the Road Again

Last night, we discovered that Katya has a swollen, painful lump on the top of her head just up in front of her scar from surgery. The lump is about 1.5 inches in diameter, and about 3/8 inches high. It is painful for her. I had noticed earlier in the week that she was jerking away and gently pushing the brush away when I would try to brush her hair in the mornings.

I had (wrongly) assumed that it was a new stage or phase in her development--similar to how she would allow us to put several items of food on her plate at a time before she began eating when she first came home, and then would polish her plate clean. Now? She only wants ONE item of food on her plate at a time, and screeches MOST unhappily if we attempt to put even two on--even if they are at opposite sides of the plate--and she also leaves prodigious amounts of food on her plate and thinks she is "done eating"! These are changes that clearly show Katya has been able to develop more healthy emotions about food--she also feels the ability to make some choices about how her plate is handled. She no longer feels powerless, and afraid that we will starve her. So good things.

It's easy to see how we assumed that the hair brushing was a "new phase" in her development for a few days. However, when she was eager and signing "Yes! Yes!" she wanted to go with her Daddy to run an errand yesterday early evening, and then ran and cried and shook her whole body, "No! No!" when I said OK, I would need to brush her hair first, you can easily see why I said, "Hmmm." And Charity said, "Hmm." And things started to click together and we began to gently feel her head.

What a sick feeling in my stomach when I realized . . . .

Per a previous discussion with Dr. Dorafshar after Katya had those several episodes of facial swelling, we did not rush her off to the local Children's Hospital and spend the night sitting up becoming more and more ragged, only to turn around and need to head to Baltimore. Instead, we spent the night in our own house, and are now packing and planning to head out to Baltimore. Katya will be seen tomorrow AM by SOMEONE at JHH (hopefully Dr. Dorafshar is in town . . . ) and I guess we will see what happens. I expect that there is a very good chance she will be hospitalized, but we will see.

Pray for our sweet Katya, and our family, as we head into the unknown . . . .  And if you wish to keep up with what is going on, I'm guessing the best way to do so is probably by following our blog AND Charity's blog.

Saturday, January 12, 2013

Working With Her Hands

Charity re-potted a few herbs for me into larger pots back before the weather turned really cold. Katya has been very interested in plants ever since Charity explained to her that plants get thirsty, like Katya does, and need drinks. She will come on her own if she sees us watering the plants and wants to help water the plants. Katya does it very carefully. So when she saw Charity potting, Katya was extremely interested at the time, and watched like a hawk.

When Charity went out today in this balmy weather to move our basil and aloe-vera plants into larger pots from the thrift store, she made sure to call Katya to come help.

Katya was delighted.

After the plants were potted, she was concerned that she get all the dirt that spilled scooped back up and into the bag.

 She tried sooo hard to get it all, and began to get frustrated when she couldn't.

Such persistent effort!

I asked her if she would like a broom, and that seemed to meet her approval.

Katya worked and worked.

                                     She worked and worked till the porch was nearly all clean! Then she brought over the broom and gave it back to me. Isn't she so precious?!

 And  . . . just as a family history note, Katya is wearing a hat that was made for my brother Jeff, who died from complications of von Recklinhausen's Disease  when I was only 6 years old. I believe the hat was made for him by either my Grandma or Aunt--not entirely sure--but either way . . . I'm glad that it some how was saved and eventually given to me to wear on my kiddos. Katya seems to like it as it's a light weight and very soft hat. ;-) Doesn't she just totally rock it with the rakish angle she wears it at?!