"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, 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.