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

Dr. Ben Carson on Katya Dueck

Wednesday, October 7, 2015

Finally--Headed Home!

Thank God! After leaving home after church September 6th, we are *Finally* headed home tomorrow on October 8th. We are so excited to be able to go HOME! It has been quite a journey for our family, but God has been so faithful and with His help and the support of so many, we have survived this challenge.

Katya has been an amazing fighter--we are so very proud of her! With the support of the amazing Child Life team this time at Hopkins, Katya weathered so many huge challenges. Last time she was hospitalized (in 2012) so many of the hospital procedures were hugely traumatic for her. I entered the hospital this time with a fierce determination to get in and back out with out any post traumatic stress events for her. Thankfully, I was able to accomplish that goal thanks to how protective and supportive not only the Child Life staff was, but also Katya's nurses! In general, we felt we had much support for this goal also from the physicians and other staff who cared for her this time and so I am very happy to report that we went through two surgeries and many procedures during a total of TWENTY FOUR DAYS in-patient and got back out successfully! I can not stress enough how very huge this is for Katya. Her self confidence actually grew during her hospitalization as she successfully went through new and scary things with lots of support and encouragement.

Today while we were snuggling and chatting, I asked Katya if she had been scared while she was in the hospital. She signed "yes" but was unable to answer, "What made you scared while you were there in the hospital?' until I handed her the Ipad. Then she quickly replied, "Ouch".  "You were scared of things that hurt you?" I asked her, and she signed, "yes". I told her that she had been so very brave--that even when she was scared of things that were hurting her she had tried hard to cooperate and do what she was supposed to so that the Drs and nurses could help her to get better. Her sweet face lit up a little and I could see in her eyes that she understood. I asked her then if she was glad that the Doctor's had been able to fix her head so much and that her big soft spots (which used to bother her if someone accidentally touched her head there) are gone. Her face lit up again and she signed, "yes". So I feel satisfied that we made the right decision.

During the awful few days when things were all up in the air after it was becoming apparent that Katya had a serious infection in her skull area, and then the night when we *knew* she was a very sick girl and was facing surgery again,  there were times when I wondered if we had made a horrible mistake to go through this surgery. I had to keep going back over our decision making process and asking myself if we had made a mistake. It was not a fun process. But I  kept coming back to this phrase--"There is no way out but to go through this." And then it would echo in my head--"through this  . . . through this . . . "

And corny as it may sound, that phrase gave me courage to put one foot ahead of another. To walk into that OR on a total of 1.5 hours of sleep, set aside the tears that wanted to flow and to sing Katya's favorite song to her while she drifted off to sleep for her emergency surgery.

And now we are out on the other side mostly and it looks like we have come through this with the "best case scenario" so far. We don't know yet, and won't know for sure for several more weeks until Katya has completed her course of treatment and is off her medications for awhile whether or not we are completely through with this chapter of our lives. But we feel hopeful, and so does the staff who is caring for her. Everyone says Katya has recovered faster and better almost than they had dared to hope for.

We give thanks to God for her improving health, for her fighting spirit, for the excellent care she had, and for the fact that so many people around the world have loved our Katya and been praying for her and our family.

I have had a few people ask me if our experience this time was worse than our previous time. No, absolutely not even though this time was longer and had it's share of challenges. But things overall were much better and more stable for our family in so many ways. I could give a long list of ways it was different than last time, and while I may some other time, I won't tonight.

Katya's experiences this time were overall so much more positive that we are glad we made the decision to return to Hopkins and allow them a "chance to show they can do it better". It was better this time. So much better. Yes, something went horribly wrong during the surgical process that the infection was able to take root and overwhelm her body. There are no clear answers forth-coming about that, and there likely never will be because while it's as obvious as can be that *something* went wrong some where, I doubt any one but God knows for sure. Infection--even life-threatening infections--are sadly a risk of surgery even though typically things go well. To me, while of course I'm unhappy that Katya and our family had to go through that, what is most important is that she received good care once the situation was figured out. Her surgeon did his due diligence caring for her once he figured the situation out, and that is what matters most to us.

Additionally, his team of residents this time was extremely respectful and mindful of Katya, and showed themselves to be a bright and likely group. His newest Chief Resident was an amazing woman who quickly figured out how Katya was ticking and worked in very intuitive ways with her to accomplish things like getting out a head drain and a head full of staples. Those things count for a lot.

Friday, September 11, 2015

Surgery Update

Katya's surgery occurred on Wednesday as expected, after some initial delays in the morning. The surgery went very well and she was out before the estimated end time.

She is having a difficult and painful recovery, but that is to be expected. She is running a small fever currently, which was brought down to an extent by Tylenol, but prayers are still appreciated for that.

She was feeling considerably better following getting some food into her.

Saturday, September 5, 2015

A Big Surprise!!

There is a sweet family in our community who we knew a little in several different ways. When they found out that Katya was having surgery, they got in touch with us and asked what music Katya liked, and some other questions.

Last night, they came over with an amazing huge gift bag! Look at one of the things inside for Katya!

She was so curious and then so happy when she realized what it was! What is it, you ask? An AMAZING MP3 player that this kind family pre-loaded with some of Katya's favorite songs and some very wise choices of their own! The ears also function as a nightlight of gentle rotating colors! Katya loves it. And when I explained that her friend, S., had a similar bunny and that this present was from S. and her Mom and Dad because they thought Katya would like one too, Katya's face lit up in the happiest and sweetest of smiles!
This very generous gift will be accompanying us to the hospital, no doubt about it. It's small and light weight enough that Katya can tuck it beside her in bed if she wants to, and tidy enough to sit easily on the bedside tray if that works better. I am guessing that it will accompany us to the treatment room for blood draws and such as well.
The love and care of this family will bless our family for many days! Our deepest, most heart-felt thanks to the W. family!!
And while I'm giving thanks, I'm going to mention a few more people who have done a lot to help us be ready to leave in various ways! This is not intended to be an exhaustive list but quickly off the top of my head, a big shout out to A. who has been coming over and faithfully helping us get some fall house cleaning done for the last few weeks. I was not able to get the entire house done, but we got the main areas done and the kids bedrooms done, so I'm very thankful and will call it good till we are back from Baltimore. Also, she came over yesterday and helped do a general cleaning of the main areas of the house so that we can leave things pretty clean for those who will be still here at home. That is such a peace of mind to me!
Additionally, there is Katya's dear music teacher, Amy, who has been blessing our family in various ways by spear heading up some things like an email list to send out prayer requests for our family, meals for after we come home and other things! She's an amazing woman of God with a servant heart!
And then there is Laura, who is the most amazing and wonderful director of the special needs support group we are a part of. She has been coming with ideas that will be a blessing and help to us!
There are many more people but as I said, this is not intended to be a comprehensive list. But we want to thank all of you who have helped in any way from the bottom of our hearts! We are feeling the prayers of God's people for Katya and our family and are seeing the results in tangible ways!

We ask you to continue to pray for Katya's Doctors and all the staff that will be involved in her care. She will start having appointments on Tuesday, the main one being with a Child Life Specialist who has a lot of ideas that we are hoping and praying will be useful for Katya in various ways. Then Wed., September 9th we need to be at the hospital 5:30 AM to start pre-surgery prep. Then they hope to have surgery going by 7:30 AM. It is expected to be another very long surgery--close in length to her previous one, which was about 13 hours.
Pray for Katya to have peace and calm in her heart, and for her little body to handle the stress of this surgery well. Thank you, dear friends!

Saturday, August 8, 2015

The Indignities of Adopting

One day recently, another adoptive Mom and I were talking about all the things adoptive parents go through that biological parents don't typically get to "enjoy". And since she and I are both bio and adoptive moms, I think we have a pretty solid basis to compare the situations.

Well, I'd had a horrible rotten no-good day that day, but as we were chatting on that topic, I suddenly remembered the story I'm about to share with you, and it kind of brightened my day a little just reminiscing about it. I thought you might enjoy hearing about it as well.

Back track to 2004 and Paul and I were deep in our adoption process of Kristina. And Russia very carefully tried to screen the health of parents to be. Among many other things, we both had to be tested and proven free of HIV and Hepatitis. After making a lot of phone calls and inquiries, we found out that the most logical place to go get those particular tests done was our local Health Department.

So we called, explained the situation and got an appointment date to come in for this testing. On the day appointed, Paul and I were sitting all nice and pretty in the waiting room quietly minding our own business when the nurse came to the door way of the waiting room and loudly called, "Mr and Mrs Dueck, you can come back for your HIV and Hepatitis testing now!"

You could have heard a pin drop as everyone's heads swiveled to look at this "Amish" couple standing up to walk back for their STD blood born pathogen tests. You really could have. I'm sure I saw a few baffled and astonished looking faces too! And did their eyes see right that the Missus is pregnant too?!

It still makes me giggle just a little to this day, even though at the time it was just slightly annoying.

Moral of the story--what you **think** you know could be really, really far from the actual truth!

And this is also why it's not accurate or polite to ever say to an adopting parent, "Oh, you are taking the 'easy way out'." Trust us on this--we go through things no bio parent ever does. Being a bio parent brings it's own set of challenges--I do not discount that. But so does being an adoptive parent.

Moving in a Blur

The days are moving in a blur.

We are desperately trying to cling to all the precious moments we can--to imprint them on our minds. The sound of Katya's giggle. The twinkle in her eye. The feel of her skin. The curls in her hair. We snuggle her and tell her a thousand times a day how much we love her. We hug her and kiss her, sometimes with tears raining down our cheeks.

September 9th is racing at us, all too fast. We cry out to God for his strength, his mercy. We brain storm every way we can think of to try to head off proactively some of the issues we had last time that led to Katya nearly dying twice post-op. We tell ourselves that this time will surely be different. We try to be brave. But we are scared. So scared for her. And yes, scared for ourselves too.

So we go back again and again to God. That is all we can do. Cry out to him. We know that while it's good to be pro-active, good to make wise care plans and good to advocate for Katya in every way we know how, that ultimately, all that happens is way too much out of our control. We can do our best, but we can't make sure that this surgery has a smooth or good process. We can't be sure that post-op recovery will be any less traumatic and stress free than last time. We can't be sure that we will even walk out of that hospital with our precious Katya with us.

So while we try to be positive, we also try to be realistic. We keep searching our hearts and going over and over our decision making process that led to this surgery and questioning every detail. Because we have to know that this is the right decision--made with as much care as possible--so that we can stand on that fact no matter what happens.

Last time, when Katya was suffering beyond what I can even express here for 14 hours with a combination of a clogged surgical drain tube, anaphylaxis, dehydration and out of control pain, I remember calling my Mom about 8 hours into it and sobbing my heart out. "Mom, if I had not known this surgery was absolutely necessary, I would absolutely hate myself right now!" I cried.

I know now that pretty much every thing she suffered during that 14 hour time span was completely preventable and her suffering was the fault of a nearly fatal combination of mistakes made by the residents caring for her over the weekend. That does not make it any easier for me to handle--it in fact, makes it worse.

And for that reason, among many others, I am afraid. We do not take this decision to put Katya through surgery again lightly. We know she lost ground during that 14 hour period that she has never regained in several key areas and that makes me sad. It makes me sad that she suffered unspeakably for 14 hours. It also makes me angry . . . and that makes me afraid too. I do not want to go into this surgery time flinging bricks unnecessarily at every one due to fear and anger from last time.

And so, again and again, I cry out to Jesus for his peace. His sustaining mercy and grace to me. For me to have the wisdom to know how to advocate powerfully for Katya but not to be a jerk who spreads fear and terror among the residents--who are, certainly,  a completely new and 'innocent' batch of residents.

And we pray for her Doctors, for the nurses who will be caring for her, and yes, for the residents, who admittedly are who we feel the most instinctively wary about after our really bad experiences last time. We pray, and we pray. About many things. Things we have shared here and things we have not.

Meanwhile, time races on. And September 9th is going to be here way too soon. Way too soon we are going to be told to kiss Katya and walk out of the OR, leaving her behind for the next 10 to 13 hours or so. Way, way too soon.

So we hug her and kiss her and sing to her and pray with her and love her and hold her and read to her and play with her and snuggle with her and do every thing we can to cement these memories into her heart and into ours. Because time is moving in a blur, and September 9th will be here way, way too soon.

Wednesday, July 29, 2015

Ukrainian Festival and Other Summer Activities

We only were able to squeeze a 24 hour vacation into our lives this summer. But we made the most of it!

Paul had enough points accumulated from all the business travel that he does that we could get two nice rooms for free in a hotel. We raced through therapy that Friday morning, a few errands and pushed as much laundry as we could through the washer and dryer, while packing.  We packed our supper, and headed out. The kids were great travelers and we did not have to make any stops till we got to our destination in the outskirts of Cleveland.

After checking in, we found the hotel pool nearly deserted, so Charity and I took the kiddos to swim while Paul crashed for a nap. Working nights and then needing to drive to the next job during the day has meant that many 24 hour periods he gets as little as maybe 4 or 5 hours of sleep, and it's taken a toll on him, so the nap was pretty necessary.

The kiddos had a ton of fun even though the pool water was surprisingly cold. It finally caught up with Katya though, and she began to shake, so it was time to get them all out and into the warm water that awaited in the Jacuzzi tubs in our rooms! It was SO much fun to watch Katya enjoy her first Jacuzzi experience! ;-) She loved it, especially when Kristina joined her in the tub and was playing with the bubbles with her. Both girls had a blast. ;-)

After the swimmers were warm and dry, we headed out for a bedtime snack--a trip to Menchies for some yummy cold goodness.

It was pretty cute--on the walk from the parking lot to the store, Paul asked Katya if he should get her a hot dog. "No! No" signed Katya! Paul laughed and asked if he should get her Menchies. "YES!" she signed. She does love her dairy free sorbet there!

After that, it was time to head back to the hotel and our comfy beds. We got up in a timely fashion the next AM, packed up after enjoying breakfast and then headed to the Ukrainian Festival.

We were truly not sure how Katya would do with it, but we wanted to try it. She did fantastic! With her noise cancelling ear muffs to tamp the sounds down, she stayed pretty calm and happy the whole time. The food of course made her quite happy! She ate vast quantities of Ukrainian food.

She played outside with the children's activities (bubbles, side walk chalk etc.) and enjoyed looking at the Ukrainian hand crafts.

Paul was quite happy too.

He said that the food reminded him so much of what he grew up eating at various relatives homes. We had figured out when adopting first Kristina and then Katya that much of the food he grew up with clearly had it's roots from when his relatives were living in what used to be called "Prussia" (now Ukraine). I think that is part of why our family feels we have found such a "home" with Ukraine.

Chad had been concerned about going to the festival, fearing he would find it hard to enjoy due to "strange foods". Well, he quite happily downed a huge bowl of borscht (that is a food we fix frequently), and then was relieved to find that outside of the fellowship hall they were grilling something as American as hot dogs for those who needed American foods! ;-) He ended up being quite a happy camper!

We found some people to chat with, enjoyed hearing Ukrainian accents again, and after a very interesting question and answer session in the church, we headed out hot and tired but happy. Kristina was still interested in attending the Russian festival, even if briefly, so we headed that way. Paul and Chad thought they were tuckered out enough they did not want to keep walking so we left them to sit in the van while the ladies headed into the festival. The food there smelled delicious too but we were still too full of Ukrainian food to indulge.  After wandering around awhile and listening to some of the music and watching some traditional dances, we left because we had to drive all the way home yet and get unpacked and to bed for church the next AM. And I needed to stay up and finish packing up Chad for camp!

So after driving for awhile, we stopped for a quick supper at Chik-fil-A because Katya likes their chicken noodle soup. Well! This time she did NOT want to order fruit with her soup (her usual order there) and she only picked at her small bowl of soup and finally only got down about half of it before rejecting the rest. I guess she was still full of her Ukrainian food! LOL!

We got home and began rushing kiddos through the bedtime process while I began washing and packing Chad's stuff for camp in earnest. Months ago, a friend alerted me to a camp for children with medical needs. She suggested we see if Chad would be eligible because his asthma makes it hard for him to participate outdoors in a lot of activities at times in the summer due to the heat and humidity being a trigger for his asthma at times. We went through the application process, including Chad getting a physical and a referral from his CRNP who thought it was an excellent idea for Chad to go. He was accepted and the big day had finally arrived! Sunday after church we took him. He was excited!

He was the first kid to his cabin, so got to pick his bed out of all of them. He choose a top bunk with a dog themed quilt. All the beds had adorable assorted quilts! And the Counselors told us that the kids each get to take their quilt home at the end of camp! Chad was excited to learn he could take home his chosen quilt. ;-) The camp sends out an update or two to parents throughout the week and Chad's reports state he is doing well. A little home sick but having fun. I'm so very glad for the chance for him to go to a camp experience where he can make new friends, have a lot of fun and yet be supervised by trained medical personnel who are experienced in helping kids with asthma to stay safe! They are also trained in food allergies, so the fact that he needs to avoid all dairy as we have found it is also a definite trigger for his asthma was something that can be handled there as well.

We can't wait till he can get home and tell us all about how much fun he had! ;-)

Meanwhile, on the home front we have been doing a lot of deep cleaning. We are trying to do every thing we can to have the house as spic and span as possible before Katya's surgery so that during her recovery period we are less stressed! We do not know how long her recovery time will be, nor what all it will entail--home health nursing for a period of time possibly even--so it just seemed prudent to get our fall house cleaning done now. I'm always happier when I know all the dust and grim is at a pretty low level so think of it as being good for my mental health too, which is important after going through the stress of a hospital stay.

So we are running hard and the summer is flying by . . . there are only a few more short weeks before we head to Baltimore for the big surgery. Thank you to all who have been lifting up our family in prayers! We also were blessed with some anonymous money that arrived with a Texas post mark, and some gas cards that also arrived anonymously with an Ohio post mark along with a super sweet card of encouragement. We thank whoever our kind donors are. Please know that your gifts are MUCH appreciated and will help a lot with the many expenses that our ins. does not cover when we go to Baltimore. It is very kind, and feels like warm reminders of God's love and care for Katya and our family.

Here's hoping you are all having a great summer! Leave a comment and tell us what is keeping you busy!

Wednesday, July 15, 2015

Another Surgery

After a lot of stops and starts for the last few years, and lots of various evaluations and second opinions (both obtained by Katya's plastic surgeon from mentors he trusts and by us from several medical professionals who have no "bone in the pot") the decision has been prayerfully made to go ahead with another major surgery on Katya's skull.

This will consist of several procedures.

#1. Removing some hardware from several locations that her body never was able to absorb from her surgery in March 2012.

#2. The more involved and serious part of the surgery will involve trying to patch several significant  "holes" that remain in her skull from the major expansion in March 2012 that her body was not able to fill in with new bone growth. These holes leave her brain vulnerable to injury. Bone will need to be taken else where from her body to lay into these areas. We will not know for sure till Katya is out of surgery exactly where the surgeon will have taken bone from. He has discussed with us that he may have to take bone from the back of her head, her ribs and even possibly her hips in order to get enough bone to fill these holes.

Yes, we are aware that the more places he has to take bone, the more significant Katya's post op recovery will be. No, we don't like thinking about it. It makes me want to cry to think of putting her through this. But her surgeon's at Hopkins AND the medical professionals we have consulted all feel that this is the safest long-term course of action to take for Katya.

As per her CT scan in early June, Katya's skull bones remain only 50% as thick as the average person's, so her whole skull is fragile. Her general bone structure is small, so that makes this surgery tougher than it would be on an average person. We have been praying specifically for miraculous bone growth for Katya prior to her surgery on September 9th, and we would love to have you join in with us in prayers.

In addition to the procedures being done on Katya's skull, there will be at least one other procedure done while she is under general anesthesia--possibly more. We are being told that the surgery likely will be about an all day surgery again--similar to the 13 hours or so of last time.

She will likely have a lot of pain post-op we have been warned, and as her plastic surgeon, Doctor D, said so wisely, "This is Katya we are talking about, so of course we have to be prepared for bumps post-surgery!"

Please pray for our sweet Katya! We know she remembers enough about the previous surgery and the horrible aftermath that she will likely be quite scared this time. She understands so much more English than last time, that I hope it helps. She also has been with our family much, much longer than last time too. Over 4 years this time versus less than a full 9 months last time.

We also have some ideas to help prevent some of the complications post-op that happened last time. Paul and I have had a "chat" with her plastic surgeon and as he pointed out, "This time you have ALL of my contact information and you know how to use it even if I am not present in the hospital." Yes, that will make a big difference from last time when residents who were not listening seriously to my concerns were caring for her. I have never known Doctor D. to "blow off" carelessly anything I have shared with him about Katya, and we have a mutually respectful relationship when caring for her.

Were it not for that, and the fact that we do feel a measure of peace as we have prayed about this, I think we would run screaming in a panic the other way. I'm sure it will be an on-going challenge for our whole family as we proceed forward through the next few weeks. Pray for all of us as God lays it on your hearts.