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

Dr. Ben Carson on Katya Dueck

Wednesday, August 31, 2011

Results of CT Scan

Call from Dr. Carson's office. Katya's CT scan showed lots of good healthy brain. (No surprise there, for those of us who are learning to know Katya close up!)

The bad news is that parts of her brain show signs that indicate PRESSURE. No one knows if it's "past" pressure, or "current" pressure. If it's current pressure, then we have a problem that needs attention soon.

So, off to Neuro-Opthalmology and have a dilated eye exam to rule out papilledema--which will help Dr. Carson chart the next step for Katya.

Also, Katya started music lessons yesterday and her music teacher is VERY excited about her. ;-) She was so excited, she has offered to teach Katya for a much reduced price as she wants to help her blossom and grow. THAT was just the icing on the cake . . .and a true blessing from God!

I have so much more good news to report, but that will have to wait for another post. My blogging time seems pretty limited these days . . .thank you to all of you who are reading and praying for Katya and our family! We really appreciate the prayer support and the comments!.

Monday, August 29, 2011

Learning New Things!

Katya is learning how to help fry the meat!

Scrub the potatoes

Rinse the potatoes

Peel the carrots

And keep on peeling the carrots . . .

And . . . AND . . . AND . . . Pet the cat!!!

Yes she is!!! She's still scared of him, but she's getting a LOT braver!!

Big News Too for Katya--she is going to go to SCHOOL this week for the first time! She will go for one hour on Wednesday with her Mama. I can't wait to see how she does with it! I'm sure she will be scared--so I'm very grateful that our local school's team had the good sense to invite me to stay with her the whole time. We are feeling very positive about working with them and are looking forward to seeing what all Katya will learn once she is given teaching each day. For right now, the amount of school she will be going to is limited to one hour a day, and several days a week. After about two weeks of that . . . the IEP team and we will re-convene and discuss what we want to do from there. But for now, we are trying a main-stream Kindergarten class with a teacher who taught Special Ed for 8 years before switching to the kindergarten teaching.
Paul and I feel really grateful so far for the positive interactions we have had. I'm sure as time moves on we may have our struggles at times with things--after all--we have been home-schooling for over 12 years now!--but for now, off to school Katya goes.

One More Thing--Katya is learning to play with toys!! She now will sit and play with Duplos and the Fisher Price Little People on her own some now! We are soooo excited at all the positive changes we are seeing in her in the last two weeks! YAY for progress!!!

Friday, August 26, 2011

Riding the Roller Coaster to the End--The All-Important CT Scan!

Well, we have been on a roller coaster ride since last Friday, a week ago, when Dr. Carson asked us to get a CT scan done ASAP for Katya.

I will spare you all the ups and downs--the twists and turns--and the time we thought that the whole roller coaster had mal-functioned and was about to let us sit to so speak . . .

Meanwhile, during this scary ride, Katya's head has continued to get worse with current bulges getting larger, and new bulges forming. She obviously is in discomfort at times from the way she holds her head and looks.
So hard to have such a communication barrier at times like that!

Anyway, today we got up early and set out to Akron Children's Hospital to get the CT scan done. We ended up there because they could get us in this week. Once we arrived, Katya was able to get her CT scan done *without* any sedation or general anethesia! I'm sure that was in large part to the many prayers going up on Kayta's behalf! I also want to give a real shout-out to the Akron Children's team who worked so hard to help Katya understand what was going to happen and to reassure her--including their awesome Russian interpreter, Anya!

I was able to wear a lead shield over my body and lean in to the machine with Katya with my hand on her jaw to help keep it still, as well as to let her feel my touch. I'm not happy about the amount of radiation I was potentially exposed to, but it's all in the line of duty for this Mama!

The actual CT scan was very brief and then we had to wait a bit till they could print off a CD with the pictures of Katya's head/brain for us. The precious CD has now been overnighted VIA FedEx and should be waiting for Dr. Carson on Monday a.m. promptly, unless Hurricane Irene disrupts things too much! Hopefully not.

Monday will be a new experience for us--Paul and I will be meeting with the team of professionals from the local school to discuss Katya's needs and try to draw up a plan of action for her. We continue to see signs that make us very hopeful that with adequate education and therapy Katya has a great life ahead of us. So hopefully we will find great enthusiasm and a willingness to work for Katya's best good on Monday.

Friday, August 19, 2011

Craniosynostosis

Craniosynostosis--what a big and ugly word

And what a mess it has made of sweet Katya's body.

However, Dr. Carson (who was just as warm, personable and caring in real life as I have always heard him to be) seems to feel like he has a good handle on the situation so far. He feels that Katya's worsening is due to rapid brain growth due to increased nutrition and food (hard to believe that by virtually starving her an inadvertant kindness was done to her!). He noted the foot dragging (now happening with both feet) and her clumsy steps--things which have changed for the worse since her head issues deteroriated.

The plan is for us to get a High Resolution CT scan ASAP. "And then make them give YOU the CD of pictures and you send it to me!" said Dr. Carson. "Don't let  them try to tell you that they will send it to me. I KNOW you will get it to me faster than they will!"

After Dr. Carson gets the CT scan results, he will form a plan of action, based on what he can see of Katya's head. So we don't have all the answers we want, but we are at least on the right track now and moving forward.

Dr. Carson also laid to rest the idea that two of Katya's fontanels are not completely closed (which is what we were being told by other Drs.) He said he can see why they might have thought that but a careful examination shows that not to be the case. They are closed.

Well, that makes a LOT of sense to me because I couldn't understand why if they were open we were getting such a bulge on the top of the head as her brain grew . . . He said the reason they are still a "dip" though is because her sutures closed unevenly and at the wrong times . . . so you end up with a mess.

We asked Dr. Carson if he has ever had a case similar to Katya's before and he nodded that he had.

As he walked out of the door, he won my Mommy heart because he tossed this over his shoulder at me, "We are going to focus on LIFE from now on! I believe someday Katya will amaze the world!"

Yeah. Me too. Me too.

Friday, August 12, 2011

For Sale Items

One of Charity's hand made flowers. This flower is made from up-cycled poly fabric. It is made so it can be worn as a pin on a dress or blouse, fastened to your bun with a hair pin, or a bobby pin slid through the loop on the back and it put in your hair elsewhere. You provide the fastener of your choice.



$9.00 shipped to the Lower 48 states via First Class mail.

Girls and grown women both seem to love Charity's flowers . .  With a little care they will last a long time, and are a sweet way to have a special touch.

Email me at phdfam@gmail.com  if  you are interested in purchasing this pin. All proceeds go to help Charity's violin upgrade fund grow.

Thursday, August 11, 2011

For months, even before we adopted her, every time I prayed about Katya's medical needs, this was the face that came to me.

Dr. Benjamin Carson addresses the 2007 International Achievement Summit in Washington, D.C.

And this was the name that came to me: "Dr Ben Carson".

I am very grateful to God, and very, very happy to tell you that Katya has an appointment with Dr. Ben Carson on August 19th at Johns Hopkins. I don't know what our dear Doctor S. said to get Katya in to see Dr. Carson, because he only sees a VERY limited number of new patients per year, but Katya is in.

I have peace that we are walking the path God has called us to walk for Katya . . . I have faith that Dr. Carson, who believes in God and His almighty power, is the best Doctor for Katya at this point in her life. I don't know what all is ahead of us on this journey, but we are on the journey, and trusting that God who has preserved Katya's life thus far will be walking with Katya and with us each step.

If you want to know more, read "Gifted Hands" and watch the movie. I don't remember when I first read "Gifted Hands"--I think when I was around 20 or so?? So about 20 years ago . . . I always wondered if Dr. Carson had had access to my brother, Jeff, who died of a non-malignant tumor at the base of his brain, would Jeff's story been written the same? Who knows . . . I don't know . . .

But when I began praying about Katya's medical needs and Dr. Carson's face and name kept coming to me, and every where I turned it seemed that his name was popping up--even in the Sew Beautiful magazine (of all places!!), I knew I had to follow the promptings. When I researched and saw how few new patients Dr. Carson saw each year, I knew it would be a big thing and an "open door" sign for us if he agreed to see Katya! And he did.

Now granted . . . no one wants to be in that "elite few" category with their child . . . but you know what?? Since Katya does seem to be in the "elite few" with her head issues, I'm glad that a Dr. with years of experience is going to be the one looking at her! It's time to get some answers for Katya and get the process started to give her poor brain and head some relief!

Specific Prayer Requests:

* For baby sitting to work out for our children while we are gone

* For Peace and Comfort for Katya and all of us

Praise Reports:

* Katya was FINALLY added to our insurance!

* Katya has a SS number now!

Wednesday, August 3, 2011

What's Going on With Katya?

She still SHRIEKS about the cat  . . . but she's also very, very curious about him! I have PROOF taken just today!

Such a morose look on her face as she studied him from behind the safety of the glass!

Chad is finding ways to play with Katya inspite of all her attacks on his safety and well-being in the form of random attacks of pinching and biting . . . I think he'll win her over yet . . . cause the gal LOVES music and and he gets her and waltzes her around the living room to the sound of Tijuana Christmas on the record player!

Tijuana Christmas

As you can see, it's fun for them both! 


You can also see how nice and thick her hair is getting--and LONG--from the pictures.

That's the good news . . .
The not so good news is that Katya's head shape is worsening. She's getting a big ugly ridge pushing up on the top of her head. The Dr. saw her yesterday and said that her head has definitely gotten way worse than it was just a few weeks ago. Katya also is "ouching" if her head is touched even lightly in that area. So it's become URGENT that she see a Dr. who is a specialist in cranio issues. We are working on trying to make arrangements for that.
Your prayers are very deeply appreciated. For anyone who knows about cranio issues, you know how worrisome this is, and how of ESSENCE time is in protecting the brain. Please pray for Katya that God's hand of protection will be over her little brain and protect it from further damage . . . and that her spirit and emotions will continue to heal and that the almost certainly needed surgery will be able to be done safely and in a timely manner.
Please pray for our other kids. This is very upsetting to them as well on various levels.

Bucket Bag Still for Sale





The apron is spoken for, pending payment. However, the bucket bag is still around--$6.00 plus $2.75 shipping to the Lower 48 States.  Intended to be a soft, fun little bag for wee hands to carry around their Legos, dolly clothes or whatever! Made by Charity with care in our non-smoking home.