"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.

Wednesday, June 24, 2015

Begone, Tonsils!

Up until the last two winters, Chad was my healthiest kiddo. He rarely ever had even a cold. Then a series of infections felled him, and he developed not only asthma, but enlarged and "boggy" tonsils. When he would recover from one illness, the tonsils would not really recover before he would get sick again. By this past winter, the tonsils were so large and painful all the time that we accepted our PCP's offer of a referral to a pediatric ENT and set up an appointment.

At the appointment, the ENT decided to order a Sleep Study before he would agree to surgery. So we had to wait to get that done, then wait for it to be interpreted, then wait some more until Chad's approval for surgery moved through the system and we were called for a surgery date. Meanwhile, Chad struggled to get even food down many days due to how swollen his tonsils were. I was worried too--as bad as they looked some days, I couldn't imagine what would happen if he would have even a mild reaction to something and have some slight throat swelling!

Meanwhile, Chad's desire to get those pesky, miserable things gone grew stronger and stronger. Like he told me so maturely one day, "If I don't get these out, I have no end in sight to my misery. When I have surgery, I'll be miserable for awhile but there is an end to it!"

So Monday he was right ready to get up at 4:30 AM and head to the hospital! He was a champ through the whole entire process, including a one night stay there.

Chad Waiting in the Pre-Op Area



The surgeon told us post op that fully 60% of his airway had been compromised by the super enlarged tonsils and adenoids. Given that he was in **much** better shape Monday in terms of swelling when he went into surgery, than he had often been this winter, I shudder to think how compromised Chad's airway was during those times!

The surgeon expressed hopes that Chad will have an increase in his energy and health now that those nasty bits are gone from his body. Yes, we are well aware that the tonsils and adenoids are important and intended to be a part of the body's immune system, and all the rest of us have ours and hope to hang on to them permanently, but for whatever reason, Chad's broke down and were no longer helping his life. Rather, they were hindering it, as our PCP explained that when they continue to stay enlarged and full of pitting, they actually harbor bacteria that can easily overwhelm his immune system at any time. Also, they were impacting his ability to breath well while sleeping, creating sleep apnea which further harmed his body and health. So it was time to evict them and hope for a better future!

Chad, post-op.

 
Chad's surgeon wanted him to spend one night in the hospital to be monitored. Chad was a champ about starting to take ice chips as soon as he was awake and then moving on to a popsicle and then dairy-free sorbet and so by supper time he was allowed to eat some soft foods and progressed to being able to get up and go do a craft because he was doing so well! Everyone was very proud of him!
 
By the next morning, Chad was doing so well he was discharged and allowed to go home so we got home soon after noon.
 
Discharged and Ready to Go Home
 
 
Now Chad is recovering at home. He says today he does not feel as well as he did in the hospital but we were warned that was to be expected, so we are just keeping up with fluids and pain meds and hopefully in a few days he will feel a lot better. Meanwhile, Kristina is reading books to him and whoever can snuggles and watches movies with him, or we find other things to try to distract and entertain him. We'll get him through this, and hopefully be on the path to a healthier and better fall and winter this year!!

Monday, June 8, 2015

A Serious Prayer Request

Last week we found ourselves climbing over the mountains and heading towards Baltimore yet again.

It was time for Katya to have a CT scan and to see  a handful of her Doctors.

I have processed our appointment last week for Katya at JHH enough that I'm ready to share a prayer request.

We need specific prayers for bone growth for her. In spite of all the many things we have done to try to get her bones to grow thicker again, they have not. Her skull is still half as thick as the average person's skull. This is risky for her and just not a good thing.

It was frankly disheartening to have tried so hard the last year plus to encourage bone growth through diet and Doctor suggested supplements only to be told it had not changed appreciably since her last CT scan. UGH.

Her Doctors were not happy. We were not happy.

Please pray for bone growth as well as protection in the meantime for Katya's brain and for no injuries to her head! Also pray for bone growth in general for her. The Doctor's said her overall bone structure is very petite (no surprise, we knew that). She needs her bones to grow thicker so it's easier and safer to patch the empty areas of her skull. (Yes, we have gotten a second opinion about this, and yes, it is strongly recommended that we get it done due to how large the holes in her skull are, leaving her brain at risk in those areas.)

In better news, the Doctor's were impressed with how much progress Katya had made since her last visit in early December, and were happy for so many good reports from school. Her plastic surgeon enjoyed seeing the video of her participating in her school program--I wish I could share it here but since it has other kids from her school in it, I won't be sharing it publicly.

Thank you for praying for Katya. We really appreciate it.

Wednesday, May 6, 2015

How To Stay Happy While Focusing on Coupons

Our local library has long had a community service that our family loves--they have a table with a coupon basket so that members of the community can bring coupons they do not need, and take some if there are coupons they need.

I'm a pretty regular person at the coupon box--we try hard to hit it at least once a week. Feeding our family is an expensive proposition no matter how hard we try to keep the cost down since we have multiple members with dairy allergies, and people who need to eat gluten free. We also seem to need plenty of protein (that pesky hypoglycemia!) and of course, that adds to the cost too! So while I often can't find that many food coupons that would be helpful, sometimes I do.  I also depend on coupons for razors and other house hold items that helps stretch our budget.

Well, as you can imagine, sometimes when we go to search for coupons our family can use, the pickings are slim at times. I used to start to feel stressed and unhappy as I would paw through the stack. After all, how were we going to make the limited funds stretch that week without coupons?!

One day it occurred to me that it would do me a lot more good to simply choose to believe that God knows about my needs and to accept any coupons I find as a "bonus" of sorts. That helps me to stay happy while sorting through coupons, whether or not I find any or many. Coupons are something I am thankful for when they are provided for me. But whether there are coupons or not coupons, I am trying to choose to trust. That has taken the stress out of couponing for me and turned it into a mainly enjoyable activity.

If Charity or Kristina can help me look through the coupons, it definitely is an even more fun time! Sometimes one or the other of them helps me clip and sort the coupons at a later time and get them organized into my coupon binder. My favorite way to handle that chore is to grab a cup of unsweetened tea at a quiet Subway in our area and get to work while Katya is at her music lesson with her respite provider. When I keep thinking I will "be good" and get it done when I am at home, it often just does not happen. Then coupons expire or get lost because they are not properly stored. That has happened to me often enough that I have come to realize that I really save money in the long run by grabbing the tea, plunking my binder on the table and getting to work! I carry scissors fastened to my binder, and an envelope to put coupons into that I may not want to go back to the library,  so everything I need is handy for a quick couponing session.

Today I saved $25.00 on a shopping trip to Wal-mart because of coupons. While I often do not do that well, I'm happy that I could this time. Successes like this make me happy to keep on couponing.

What tips and tricks do you find helpful if you are couponing? Do you like to coupon and find it fulfilling, or is it only a necessity that you engage in out of need? Leave a comment or link to a blog post of yours that is about how you coupon!





Sunday, April 26, 2015

A Traveling We Go

Well--we are not currently traveling anymore, but we DID last week! Paul, Chad and I went to parts West to see many relatives, especially my Dear Grandma who I had not seen for around 5 years! High time definitely to see her again!

Thankfully, accumulated points allowed us to obtain 3 inexpensive airline tickets completely for free. Have tickets, will travel! My Aunt loaned us the use of her car as she was going to be out of the country most of the time we were there, so we happily used that. And all but one night (which we used points to get a free hotel room) we were able to bunk with kind relatives. We packed a LOT of friends and family into one week. It was great even though we needed to come home to catch up on our sleep! HA!

Chad was a trooper, but he finally told us he was home sick and needed to go back and see his siblings! Seeing as that was the last day we were traveling, the timing worked out OK--we boarded a plane the next day to fly home!

Charity held down the fort with Kristina's help and made sure Katya got on and off the van for school safely each day. Katya had a tough time with us gone "so long" but she survived it and was over-joyed when it finally sunk into her that we were really home! Charity made a paper chain for her that she used to help mark the time gone, and if I understand right, the school helped too with a calendar for Katya to keep track of when we would arrive back home.

After we got home, Katya jumped and jumped so long and hard for joy that the school sent a note home the next day that it seemed as if her leg was hurting! I imagine it was a bit sore for a day or so after all the joy-jumping!

It was so good to get to see family again that I don't often get to see, as well as the change in landscape. I love the mountains and prairies and it was refreshing to see them again. It feels great to be back home with all my kiddos even though I enjoyed our little trip.

Friday, April 10, 2015

So Exciting!

Wow! As if last week's great news about Katya's musical progress was not exciting enough, we got another wonderful report after her lesson yesterday! I figured she had done really well because she came home so absolutely thrilled afterwards. Just look at what her teacher reported!

*********************************************
HI Hope Anne, Had a wonderful lesson with Katya today. She is so sweet, was very pleasant and settled, and of course, so HAPPY to be doing music. She had a smile on her face most of the entire time : )

I gave her a new song: This Old Man. The thing I noticed today was the grasping of sequencing. Instead of concentrating on one note at a time ( and she does so, beautifully, being carefully accurate) she could see a full pattern of notes - a five tone scale and play them more as a group. I will begin teaching her more with this technique as her base of note recognition increases. She will begin learning songs quicker. 
   

We also worked on note values for the first time and she loved this. I think it is because she is realizing that she is really learning music and not just playing at little exercises. We did: quarter note, half note and whole note and she seemed to understand the concept. [Yes--she just learned about fractions in school a few weeks ago, so I'm sure it all clicked with her! --HAD] I held her finger down on the note, to demonstrate and then she was able to do it herself. She has a new Write and Listen book [Book 2] as well and we began that. 

Also, I wanted to tell you she enjoys "paying" for the lesson, bringing the $$ to me herself.

That's it for now. Blessings, A.