"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, February 3, 2016

Deep, Deep Joy

The last few weeks have contained times of deep, deep joy for us as Katya continues to make amazing strides forward! We are so excited!

Not only is she continuing to have much greater success with attempts at learning to talk than she had pre-surgery (and her surgeons have *NO* idea why she came out of her general anesthesia being able to make many, many more vocalizations than she had been able to do prior to going to sleep!) but her develop emotionally and behaviorally has been taking off!

We are so excited to be getting "Good Friend Awards" and positive reports coming home again and again from school!

Additionally, when various ones of us come home after being gone running errands, Doctor appointments or whatever, the family member is usually greeted now with a wide smile and enthusiasm--maybe even several good hugs by Katya!

This fills  my heart with much joy, especially when she directs her beaming smile towards me and hugs me! ;-)

Yes, there are still lots and lots of challenges but we are seeing so many exciting steps forward for our beautiful girlie! It is wonderful to see the healing God is doing in her broken places and how He is restoring her back to the person He created her to be. We can not wait to see what new things Katya accomplishes each week!

Her SLP states that in all her years of working with hundreds of clients she has never seen anything happen before like what she is watching happen with Katya--that she went into surgery, only able to consistently say several sounds, and woke up, with a much, much broader range of sounds! And then, due to all the serious post-op complications Katya had, she missed almost 2 months of her speech therapy, and yet walked back into therapy able to make all kinds of sounds and words she could not do prior to surgery!

As her SLP stated, "We knew that her surgery was medically necessary, but we were so concerned about how it could negatively impact her perhaps--we had no clue what all these wonderful things would come out of the surgery!" Who knew indeed? Only God!

We are extremely grateful that things are going so well right now! Over Christmas break Katya was very sick with a few things, but after getting tests done and on the right antibiotics, it cleared up quickly and Katya has seemed healthier and happier than ever before in her time with us! We are truly happy.

Saturday, January 9, 2016

Katya's Umpteenth Trip to Baltimore-- Part 2

Tuesday morning we had to roll out of bed far before we were ready to get up to get Katya on time to her early morning appointment with her plastic surgeon. Charity and I did as much packing and stripping of the room as we could with Katya's help before we rushed off, and Paul and Chad continued packing and cleaning up.

Doctor Dorafshar usually comes in to see Katya with a whole accompaniment of people--it was really nice (although very unusual) that this time he was the only person who came in the whole visit! I think Katya was a lot more relaxed than usual due to less people crowded into the room, and I felt like we had a better conversation with Dr D. due to it as well. He was free to be himself, instead of being the teacher or the fellow surgeon like he usually is when we have office visits.

He expressed much relief that Katya had survived her infection and was doing so well. He said that he is leaving open that she could need at least one more surgery on her head, in the future. He admitted that her risks of having the infection return are  high if she has surgery or some other significant health event that would lower her immune system drastically. That is not what any Mom wants to hear, but I refuse to live in fear of that. We will continue to do every thing we can to keep Katya healthy and strong and walk in faith, not fear.

I have to admit that I do NOT like the idea of more surgery on Katya's head though. I will try to push that to the back of my mind and not think about it too much at this point in life. While I'm proud of how tough Charity and I stayed, and how well we worked together to get through this, the time was super hard especially as I lived in the hospital without a real break for several weeks, and a good bit of that time Paul was gone working so it was quite lonely and tough. I know it would have been far worse if Charity had not been able to come spend huge chunks of the days with me and I do not know what I would have done without her, but still . . . I simply am not ready to even THINK about doing that again. I know I coped over all so much better than back when Katya had her first cranial vault expansion and reconstruction for a variety of reasons, but it was still long and hard this time too, and felt especially lonely with Paul out of town working so much of the time. So nope, don't want to think about it and I hope it's never necessary!

We also discussed the possible jaw surgery Katya will need in a few years. Doctor Dorafshar gave us the good news that it's less likely she would get an infection in her jaw than up on her skull. She likely will need hospitalized for that surgery too if she has to have it (which he thinks she will but he said when the time comes what an orthodontist thinks will help determine the course of treatment of course) for at least a little bit but that some how feels less upsetting right now to think about . .  .  although I'm sure if it came right down to it, we would have a tough time with that one too. The good news is that no matter how we will feel, we will be strong, tough and do whatever needs done for Katya.

So pretty soon Doctor D. got the photos he needed for Katya's records, and we went off with promises to come see him again in 10 months or so when we return to Baltimore to take Katya to see her eye specialist.

Katya had been showing us the way to the Children's Hospital the day before and kept trying to get us to walk that way and was super sad when we would not! So we were happy to be able to take her to the Children's Hospital with a card and chocolates for her former nurses. We figured when she got up to the floor she would NOT want to go on to the ward and Charity was going to wait with her in the waiting area and see if any of the nurses wanted to come out and say hi. BUT, Miss Katya the brave went marching boldly right into the ward and was all happy to be hugged by some of the nurses who were there that had cared for her before! ;-) And then, to my big surprise, she began saying and signing, "Six! Six!" and went marching confidently off to her old room to look in! It was (fortunately) empty except for the cleaning lady who remembered Katya from all the weeks she spent cleaning her room, and she sure was thrilled to see Katya up and strong and hearty! Katya stared interestedly into her old room and took it all in, and the was satisfied to leave the ward finally. Afterwards, she just laughed and laughed and laughed and smiled and smiled and it was clear she was very satisfied to go visit and then leave again!

So we rushed then over to the Children's House to try to race around and get loaded up and all our areas cleaned for the next family while also hastily making and eating some lunch. And then, we were all loaded up, and ready to head home. It was obvious before we got out of Baltimore that we were in danger of *not* making it home as the van's transmission began jerking and slipping every now and then as we wended our way through the crowded city streets.

--To Be Continued



Thursday, December 3, 2015

Katya's Umpteenth Trip to Baltimore--Part 1

We regret that we did not start keeping a careful count over 4 years ago of all the many trips we have taken to Baltimore for Katya's medical care. I know the amount is astounding--once we counted up just what Charity or I had documented on our blog, or what we had record of otherwise, and it was a lot of trips! I don't think it would be an exaggeration to say we have easily averaged 5 trips a year up to this point. All that aside, we went again because when you need to go, you go, right?!

So Saturday afternoon found us heading up North to drop Kristina off with friends, and then we dropped back down to hit the right road and head over the mountains towards Baltimore. We got as far as Grantsville, MD and then parked it for the night at a hotel we have used before coming or going from Johns Hopkins. Paul had enough "points" accumulated from his business related hotel stays, that it was a free stay for us (YAY).

The kiddos got to work off the energy that had accumulated with so much sitting still in the car in the pool before going to bed. The next morning, we got up and got ourselves around while listening to hymns from YouTube and then packed up and got back on the road. The traffic patterns were not that good and we were glad that we were not trying to get the whole way to Baltimore that day!

We arrived safely finally at the Children's House, got ourselves checked in and our luggage unloaded and then had a little time to make a fast trip to The Book Thing. We had never been there before, and Charity and I ended up enjoying it. Chad was only in for about 3 minutes before something in there sent his asthma into over drive so Paul took him and Katya out to the van to watch a DVD together and Charity and I browsed a little longer. Between the two of us, we fairly easily found 13 books we thought we would enjoy bringing home. It felt SOOO odd to walk out of there without checking out or paying! (All they ask is that you use the honor system to write down how many books you take!)

A family brought in a home-made pizza supper (complete with fresh hot apple pie and ice cream for dessert) and then we tried to get ourselves settled in for the night. It is always a challenge to get enough sleep for everyone sharing a small room, as in our little family group, we have a wide variety of sleep needs and patterns!

The next morning we puttered around a bit after breakfast, and then not having anything easily available for lunch, took ourselves off to the Fells Point area to find a Subway that we could use the gift card we had been given at. We found one, ate a hasty lunch, and then ran into the Old Navy we had found when there back in Sept/Oct to snag some more warm tights and boot socks for the women in this family. They had a great sale going on, so that was helpful.

Then it was time to head back to the CH because we needed to get Katya over to her appointment. Charity and I took her for her eye exam. Paul stayed with Chad at the CH and helped him with a little school.

We had to wait a good while. Charity helped entertain Katya.



And Katya improved her mind while waiting by finding words she wanted to know in the brochure, typing them into her Ipad and then having it say them for her.



The eye exam itself went well--Katya is very comfortable with the people there that she knows. The good news is that while there was a little change in her eyes since last exam, Katya's vision was still good. No surgery needed right now, and no glasses at the moment.

Dr Repka said he is not ruling out doing surgery at some point in the future, but nothing now. We were happy to hear that, of course!

--To Be Continued

Thursday, November 26, 2015

Adult Coloring Books

While we were doing our "extended stay" at Johns Hopkins Hospital, a friend of Charity's kindly sent her a care package that contained among other things, some adult coloring books.

I had been thinking that I would enjoy something like that to do with my hands and after sneaking a peek at one of the books that Charity was gifted with, decided that adult coloring would suit me very nicely, thank you!

Well, I found it as enjoyable as I thought I might. The coloring seemed to have a calming effect for both Charity and myself.  And although I have not found time to do much with it since getting back home, Charity has continued to enjoy it, and Kristina has picked it up as well.

Interestingly enough, Katya has reverted back to coloring with precision after observing us coloring--and she had gotten to the point that it seemed she was done with coloring except for a random scribble on each page in her coloring book! So we are pretty happy about the return to careful coloring!

I especially enjoy Johanna Bashford's book, "The Secret Garden". The detailed pages of garden scenes draw me in and allow me to create a beautiful, colorful world. And the title harkens me back to my childhood love of "The Secret Garden". I loved that book so much as a child, and am still quite fond of it as an adult, truth be told!




What are you favorite adult coloring books?! What do you own and enjoy and what would you like to try? Leave a comment and let me know!

Saturday, November 7, 2015

Rejoicing!

Katya has finally, finally turned the corner and is enjoying good health again, much to the relief of her Doctors at Johns Hopkins, here local primary care practice, and of course, to us!

She first went back to school last week on Friday as kind of a trial run--Friday's at her school are a bit shorter days and then she had the weekend to rest and recharge. She was greeted with loud clapping, cheers and yells when she arrived at the school van that day! Everyone was SO happy to see her after such a super long absence!

When she got home, she looked absolutely exhausted and was very eager to go to bed that night. We are still needing to make sure she gets more sleep than she did before her surgery but the amount she is generally requiring has overall gotten a little less so that is good.

By Monday she was thankfully rested up and ready to go back to school. She had a very successful first full week back at school and now is enjoying the weekend.

We are so very grateful to God for restoring her to health! We are also thankful for the expert care she received from her Doctors both at Hopkins and here in Ohio. Additionally, we are very thankful to know about things to do to help build her immune system and improve her overall health.

Our weather took a turn for warmer this week, and that has helped relieve Chad's asthma so at the moment, we are enjoying overall better health at our house. VERY thankful for it!

Monday, October 26, 2015

Katya Needs Prayers

Katya has not been really well ever since her surgery. She was doing better, then slumped. She has been to the Doctors multiple times, has had tons of lab work done, and now today, with her **STILL** sick, we took her to the Doctor again and ended up finding out that Katya has: a fever again of 99.6 F, swollen lymph nodes, a "beefy, red tongue", and "odd sounds in her lungs". Additionally, she had sores on her face that are concerning.

So a lot of swabs and cultures were done, we were sent to get labs and X-rays. The results of the X-rays are back already and we know that Katya has pneumonia in her left lung. For right now, we are allowed to keep her at home with careful watching and management. We have our orders, and know what to do and when to take her to the ER if need be. Depending on the lab results tonight or tomorrow AM (whenever the Doc gets them) we may have to take her to the hospital to be admitted. That is not a happy thought  . . .

Additionally, Chad has been struggling and we were thinking it was "just" his asthma but now we don't know so he has an appointment for tomorrow AM to get checked as well. Just need to make sure he also does not have pneumonia since both kids got sick with seemingly the same thing last week within about 24 hours of each other.

I can't say thank you enough for all the thoughts, support and prayers that have already come our family's way, and I thank you for continuing in prayer for our precious Katya and Chad!


(Katya getting one of multiple swabs done today.)



Friday, October 23, 2015

Flashes of Hope

 
The day Katya got her final head drain out, and removed her NG tube (more on that in another blog post some time!), the amazing Child Life Specialist, Peyton, offered to take us down to the CCTV Studio where an organization called, "Flashes of Hope" was set up and taking pictures of the children and any family members who were around and wanted their photo taken with the child. The timing of this offer was impeccable--Paul had just arrived back in town the night before after working away from us 10 [tough and lonely] days, Katya was finally feeling well enough to smile, and naturally my heart was over flowing to be back with my hubby and a healthier Katya.
 
 
The emotions I feel every time I look at these photos are huge. If you look carefully in the photos, you can see Katya's IV port, my hospital ID bracelet, and other things that hint that this is not a normal photo shoot. Her head was full of 40 staples still and she was in her PJ's.  But Katya was alive, after having survived an undiagnosed surgically acquired infection for days, an emergency surgery to remove all her small bone grafts (due to being overwhelmed by the infections from two different common skin bacteria that some how were introduced into her surgical area) and a handful of other stressful events. The joy and relief we all felt was huge. And I love that the photographer was able to capture these emotions.
 

I will be forever grateful to the photographer who was willing to come and capture that day for us. Katya missed her school photos this fall due to her surgery (and her school does not do a "make up day" for school pictures). I had been feeling very sad about that. This does not replace school photos by any stretch of the imagination, but it is still a nice record for Katya and us.


Thanks to "Flashes of Hope" we have these moving photos to share with our other kids and for Katya to look at over and over to help her process her hospital stay. They did a great job capturing Katya and snips of her personality.