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

Dr. Ben Carson on Katya Dueck

Sunday, April 29, 2012

The Weekly Report

Another week has gone by. We see little improvements in Kayta--well, maybe some of these can be classed as big ones?! This past week she started back up with some jumping now and then--nothing compared to what she used to do, mind you, but a few little hops now and then. Her energy level is stronger, clearly, when she is up doing things. She still needs to spend a LOT of time resting, but when she is up she is more energetic and more purposeful. Katya has even been helping again with things that she can help with such as setting the table, rinsing dishes etc.

The BIG news is that she was well enough to go out Saturday to the special needs support group party! That was about an hour and a half long activity. Katya was clearly thrilled to be back and a ear to ear smile wreathed her face when she looked in the doorway and saw the activities and toys laid out at the various tables! She did amazingly well during the whole time--the best she has ever done to date! YAY KATYA! She even went up and partcipated in the activities during the songs, and helped with the puppets! Those two are a first for her--normally she has been tantruming during that time period! So needless to say, her big sisters were VERY proud of her. So was Mama when she found out! And hey, for that matter--so was the rest of the family!!!

Katya was pretty wiped out after the fun and excitement, and came home to spend most of the rest of the day laying down watching videos and resting quietly. But I am so thankful we were able to take her out, and it seemed to do her good--I think it was a real positive mental health thing for her! We did a lot of hand cleaning before, during, and after and hope and pray that no yucky bugs hitched a ride home with us.

Today we chose to go to a church that was close to our home, rather than go to our church which is a good drive away. That way we could take Katya out to church, (since it was a much shorter stretch of time up for her) and be together as a family (minus Todd who has fallen prey to a stomach bug--pray that Katya does not get it, please!) rather than just some of us getting to go to our church while someone had to stay home with Katya. It was the first that all of us minus one had been able to go to church together since early March, so it was high time! It felt great to get all of the 4 youngest ready for church, and then to sit in church with them and Paul. Katya seemed to enjoy that outing too for the most part. Since this church had done a lot of praying for Katya over the time she was in the hospital, I thought it was nice they could see her today. Maybe in a week or two Katya will be strong enough that we can all go to our church together. Being split apart for Sunday after Sunday has been very hard for this Mama . . . I hope we are soon at an end of family separation for routine things such as church.

After resting most of the afternoon, Katya went outside with Charity this evening to swing a little bit. Charity got some fun photos she gave me permission to share.




"Poof! Fly Away!"





A happy twinkle . . .  And note the new "gap" in her smile?? She lost that tooth this last week on her own, and we have absolutely NO idea what she did with it! She wouldn't show us when we asked her . . . and if we asked her if she put her tooth in the trash can and if so, to show us, she would just cackle and dance away. At any rate, it's gone . . . probably to never be seen again!


 Due to her expanded head size, some of the cute hats she had prior to surgery don't fit! She's actually wearing one of my hats in these photos.

And this last photo is our prayer request for the week photo . . . Do you see the look on Katya's sweet little face in this photo? Katya's anxiety levels have been very high since surgery, and they are impacting her considerably in various ways, and in turn, impacting our family significantly. We are asking for prayers that she would feel the comforting peace that only Jesus can bring to her sweet little heart and soul . . . pray for her, and pray for us as we pursue the support and care she needs each day . . . we love our little Ukrainian princess deeply and long for her to become the whole and happy person in all ways that God created her to be. We know it's going to take time, and we are OK with that. In the meantime, we appreciate your prayers and support each day, deeply. I can't say it enough--we really DO appreciate all the love and support that has flowed in for Katya! The notes, the cards, the phone calls, the packages, the financial help, the people who have pitched in locally here in various ways from mowing the lawn to giving us a hand with baby sitting or whatever . . . we are blessed in so many ways. We pray that God richly blesses all of you for your loving hearts to care for "the least of these".Thank you for praying. . . .


Sunday, April 22, 2012

And Even Better

I'm happy to report that it's clear that Katya's swelling is getting even better! This photo was taken about Thursday or Friday, as she was cuddled up watching a video of hymns for children. You can still see some swelling on the left hand side of the photo.


The photo below was taken last night. Katya had her first official "big" outing when she went with us for a short while to a wedding reception for Todd's Japanese teacher, and Charity's violin teacher who married each other in March. Sadly, we were not able to make it to their wedding (we were in the hospital with Katya then, among other things) but at least we made it to the reception held afterwards for folks who had not been able to get to the wedding.
Katya was very nervous about going to a new place, but the food helped to calm her for awhile. Once the food was gone, she soon got irritable and so it was time to leave. It seems if she is up very long at all, it stresses her enough that she becomes irritable. She's content to lay for hours in our arms--I rocked her this morning for over two hours solid for example, and she only got off my lap because I desperately needed to take care of myself,  and do some food prep for lunch. So we are trying to keep her close to home and able to rest. But we weren't able to line up baby sitting last night, so she needed to go along.


She was signing, "I love you" to Charity when I took the photo.

Some things we miss from pre-op to post op: The last few weeks before surgery, Katya was making vocalizations much of the time. She's now mainly quiet except for fussing and whinning, with occasional laughs. We MISS her vocalizations--they were pleasant and similar to humming at times . . .  She also had started making sounds such as "uhhh" and "ppp" pretty frequently. Her ability to make sounds now seems less than it was prior to surgery. This is frankly not what we wanted to see, but we still are hopeful that as her body and brain heal, maybe some of that will return.

Thankfully, at least her ASL signs still seem to be there, and in fact Katya picks them up just a bit faster than before--she is able to look at us making the sign several times, then repeat it on her own without us having to move her hands over and over before she "got it" like we did before.

She mainly either sits or lays around resting, or follows me around the house as my constant shadow right now. Katya doesn't seem to do much with playing on her own post-op, although she *can* play and sometimes does play, especially if we encourage her to . . .  The other change we notice is that her attention span for being read to or watching videos is definitely much longer than before.

So those are the observations at almost 5 weeks post-op. (Wednesday it will be 5 weeks.)

Tomorrow we have another lab draw. Hopefully we get good results from that.

Again, thank you to all of you who have been praying for Katya and for our family, and helping in various ways. I can not tell you enough how blessed and thankful we feel! We thank God for the people who are holding our arms up as we do the day to day work of caring for our sweet Katya! We are so grateful and thankful that she is here with us, alive, and recovering! I shudder to think what her fate would have been like by this time in her life had she not been able to be adopted. Please don't forget to pray for the other children who are left behind. There are many . . . . pray for them, and pray for God to raise up care for them that is GOOD.

Thursday, April 19, 2012

A Good Report

We got a good report back from the set of labs Katya had done on Monday. All her values that were tested are "perfect"! That's encouraging! It also means I need to get to the pharmacy to get a refill bottle of one of the meds she is on, as it's "doing it's job" so Katya is going to keep taking it!

On the home front, we are trying to encourage Katya to eat more. Both meds she is on can impact the appetite, and they definitely do seem to do that. Katya isn't eating enough to regain any weight--maybe hardly enough to maintain what she has left some days. We are doing lots of healthy snacks as well as trying to offer favorite foods. Charity even made a pot of borscht for all of us using the left-over broth and meat from a roast that was given to us when we got home from Baltimore. It seriously was THE best pot of borscht we have ever made, and Katya loved it! I'm glad we are also in a good season for fruits as she does love her fruits, and so we are being able to coax some extras in there too.

There is a lot of irritability going on these days. The smallest thing can trigger it. We can even be having a conversation that doesn't include Katya at all, and she will suddenly start yelling and fussing as if we had said something reproving to her. Needless to say, we are urgently looking for means to try to help her just relax a bit  . . . today we tried keeping her more quiet and resting a lot more than the previous two days. Based on how things were today, I think we made a wise call (thanks, Charity, for that insightful suggestion!) and will try to repeat it again tomorrow as much as possible. It means that we aren't able to get much done around here, but the fact that a homeschool friend sent in her daughter today to help for a few hours off-set that loss of time and we were able to still get a lot of necessary things done today AND keep Katya with the company/support she needed to spend more time resting. (She loves, LOVES, LOVES Mommy holding her and rocking, so thankfully the time passes well if I'm sitting and rocking her, and Kristina and Charity also have taken turns spending time with Katya as well when she needs to stay quiet and resting.)

We are grateful to all who have helped support our family during this time . . . in so many ways, there has been support--thank you! I know mere words can't repay, but that is all I have to offer, so thank you again from the bottom of our hearts!

Sunday, April 15, 2012

Home

On Tuesday afternoon we received the welcome word around 12:30 p.m. that we were allowed to take Katya and head back towards home from Baltimore! We had largely packed our things together that morning before going over the appointment, just in hopeful anticipation of such good word, so it was a fairly simple matter for us to finish, load the suitcases, and be on the road by 2:00 p.m. even with needing to stop at the pharmacy to pick up an additional medication for Katya before rolling out of town.

The first day we were only able to travel about 1/3 of the distance, due to needing to stop every hour or so to allow Katya to lay down in my arms and rest for awhile. If we didn't do that, she would first turn ghastly white, and then begin to turn blue again. The Doctors don't know why she is turning blue if she's up for awile, but theorize that it's due to her body simply being too weakened and worn to cope with the stress of being up. As she turns blue, she will begin trembling and shiver as if she is cold, even though she is not. It's scary to see her like that, and can't feel good to her at all, so the frequent stops were gladly taken by us, in order to keep her feeling better.

We stopped for the night in Grantsville, MD and shivered our way into the building through the snow! After three weeks of very warm spring-like/summer-like temps in Baltimore we were not prepared physically NOR clothing wise for SNOW. However, the hotel was plenty warm and so we were fine once we were inside. Katya didn't have a very good night--woke us up around 5:11 a.m. shrieking with terror and it took a long time for her pounding little heart to calm down and her to relax enough to go back to sleep. She woke back up soon after 7:30 a.m. and so that was pretty effectively the end of our night, although Paul and I did try to doze a bit more after Charity volunteered kindly to take her to get some food to eat.

The travel on Wed. seemed to go a little better, and we were able to make better time, plus we had a much earlier start in the a.m. We stopped for lunch at a Mexican restraunt and Katya enjoyed nibbling on chips and salsa.


She holds her neck alot in the area where they had a large bore aterial line during surgery. I think things must still feel tight and tender to her there, even though surgery was over 3 weeks ago now. This view also gives a good look at some of the swelling from the cerebral spinal fluid leaking from her dura.


We arrived home Wed. mid afternoon. It was so good to be home after over three weeks away! When Todd and then later Kristina, arrived home that evening, it finally felt "right" again! Katya was worn out and mostly just laid around, but she too was clearly glad to be home and smiled happily when Todd showed up. (She was asleep by the time Kristina arrived back, as Paul had to go an hour north to meet her, and then back home, after dropping us off.)

Our life is still nothing back to "normal". Katya is not allowed to go to school--probably will not be allowed to return till next fall. She is too medically fragile, and physically worn out. She's on several meds every eight hours, and I have to take her weekly for lab work. Additional meds might need to be added depending on the lab results over the next 8 to 10 weeks. There are also follow-up appointments.

 Also, Katya doesn't feel well and wants to be held for hours every day by Dad or Mom. That takes huge chunks of our time, but I know it's important for her right now. We have been managing, but this week it will be harder as Paul has a full week of work lined up and we won't be seeing him much at all for the whole week. Your on-going prayers for Katya's healing and our family's strength are appreciated!

I leave you with a photo taken today of Katya with her Daddy. When she woke up this morning, we decided that we are fairly sure that for the first time since she was started on the meds to try to reduce her CSF swelling, that it's a bit less! When I look at these photos compared to the ones taken just mere days before that I posted, I'm even more sure that the swelling has lessened. That gives us hope that the regime Dr. Carson has her on is working and that hopefully she will not need another surgery to find and patch the leak . . . we will keep praying that way.


Monday, April 9, 2012

Three Weeks

Today it has been three weeks since we left our home in the country and headed for the big city. Three long weeks that feel more like several months. Three weeks filled with miracles, three weeks filled with tears, smiles, and laughter. Three weeks of stretching our faith, three weeks of seeing God protect and provide in the darkest moments. Three weeks of missing our Todd and Kristina, three weeks of wondering how we can do this, and knowing that only with God's help and the help of His hands and feet here on eath will it be possible . . .

Three weeks of incredible stress for our family, that has been lightened by the prayers, letters, phone calls, texts, and packages and cards that people have lovingly sent. Three weeks of daily support from the special needs support group in our town which we appreciate more than words can ever, ever say. Three weeks of feeling the warfare raging for our daughter's life and the souls of our family, and three weeks of knowing that God will win in the end, no matter what happens to our earthly bodies. Three weeks of strange foods and three weeks of strange noises waking us up all night long.

And yet in the midst of those three weeks, one thing was a comfort and constant in our life--and that was our room at the Children's House. Clean, airy and comfortable, and ours. And even though the room was small for our family of 4, and then 5, when Katya got out of the hospital, it was enough, and we were happy there. The rest of the house provided a common kitchen, common toys and play area, a generous library with lots and lots of books for all ages, couches for Katya to lay and rest on (which she needs to do a lot) and so on. It was awesome.

Today we lost that constant comfort. Due to an influx of new families coming into JHH we were told we needed to pack  and leave. A friend, Janet, drove 3 hours in with her daughter to help Charity pack and clean as Paul and I were mostly tied up with appointments and tests for Katya this morning at the hospital. We couldn't have done it without Janet's help.

After the van was loaded, I went to check out and settle up our bill. $20 a night for 20 plus nights. I admit, I was struggling with some less than happy feelings. Knowing Katya is very physically weak and needs to spend a large portion of her time laying down and resting made for some not pretty feelings when I contemplated the fact that we were going out into the world without a single place having been found for us yet. I could feel anger pushing and wanting to well up. After all, it's not OUR fault that Katya's care was botched badly by the residents which landed her in PICU fighting for her life, thus extending our time here well beyond what originally had been told to us was a likely scenario.  Why should we be punished for it so to speak by losing our one security during this stressful time? Where could we find a place for our little family of 5 to stay? Mixed in with all this pull towards self-pity and anger was also a sense of curiosity to see what God would do. After all, the office manager for Dr. Carson's office had already spent a good bit of time working the phones and trying to find a safe place for us to stay, and was coming up with dead ends every which direction!

While I was feeling a bit sorry for myself, the secretary for today told me that there was no bill to pay--"It's already taken care of!" After I questioned her, I found out that the entire bill had been settled up by several sources, but all in conjunction with the local special needs support group! I was so totally blown away by that, that it kind of helped me get refocused and stop feeling so sorry for our family.

For awhile (thankfully not real long--maybe 20 minutes?) we aimlessly circled around and around the JHH area, trying to be patient and just wait for God to show His plan to us . . . the phone rang, and it was Dr. Carson's office manager. She finally had found one place nearby that might have a room. The price was very steep . . . but it was a room if we wanted to go speak with them ourselves. We went, not having a lot of options late in the afternoon, and knowing Katya needed to have a place to lay down and rest, not be sitting upright in the car as we drove around and around.

The price was pretty terrible compared to the Children's House, but when I called a family who had called earlier and offered to help pay for a night of lodging for us, they went and paid for the whole first night! (thank you so much!!!!!)  The town house is only available to us for tonight and tomorrow night. If we must stay longer in Baltimore, we will need to trust God to open up more lodging. But for now we are safe and have a roof over our heads. It's hard to stay here compared to the Children's House because it's so un-homelike, and there are no toys, or books or anything for the children to do. There is no comforting library filled with books and the peaceful bubbling of the fish tank. There are no fridges with food to grab, and no friendly faces. No one is here with crafts, therapy dogs or massages, and neither are there free tickets to local attractions for Charity and Chad to enjoy. But we are grateful anyway, for a place to sleep that is safe and clean.  There was even a rocking chair that I put to good use with Katya and she fell asleep quickly when tucket into the twin bed in the room she will share with Charity tonight.

Tomorrow Katya has a 12:00 pm appointment with Dr. D. He will be giving us input on whether or not we can leave town with her and head home. The swelling from the leaking cerebral spinal fluid is not getting less--if anything, it's more. However, Dr. Carson feels she is stable at this point from his perspective as her neurosurgeon,  and can probably be cared for at home for now with weekly labs to monitor her body's response to the meds, and follow up visits with him. We are evidently in this process for awhile to come yet--maybe another 8 to 10 weeks. At this point, it's anyone's guess whether or not Katya will have to have surgery to try to find and repair the leak . . . Dr. Carson is fervently hoping and praying that with prayers it will heal on it's own. But before we can take Katya home, Dr. D. must also release her from his perspective as her plastic surgeon.

And now, I leave you with a photo.

Katya with Dr. D. the day she was released from the hospital.

We are so very grateful to Dr. D. and his careful and thoughtful planning pre-surgery that enabled far  more to be done for Katya to reconstruct her head and face than Dr. Carson had dared hope for! And whenever I look at Katya's head of hair, I am super grateful for the fact that Dr. D. was willing to go way, way, way out of his personal comfort zone to work with Katya's intense desire to keep her hair. I can not wait for the swelling to go away, and her head to heal to the point that we can put her hair into holders again. Right now, her scalp is so sensitive that we don't even think about doing anything with Katya's hair except the most gentle of brushings each day. Some snarls from surgery are still in her hair because her scalp is so tender we don't dare do more than we have already done to try to get them out.

Wednesday, April 4, 2012

For Henry--Katya and Dr. Carson

Katya, the day before surgery, taken specifically for Henry. She wasn't that impressed with getting her photo taken right at the moment, and Dr. Carson suggested we try again since he knew the photo was especially for Henry, but I told him, "Henry knows Katya, and he will totally understand!" ;-)

I've tried several times before to load this photo, and blogger was completely uncooperative, so thankfully I could do it today! Maybe if blogger is cooperative, I can get up some more photos. ;-)

And while we are showing this photo, I have to tell you that Katya went into the Operating Room the day of surgery still happily sporting her (now famous) polka dot glasses. When I put her on the table, she began whimpering, and I said to myself, "OH NO! She clearly remembers and must not be happy!" But a fast thinking nurse said, "Let me just give her a heated blanket" and Katya grabbed that, pulled it up over her head and settled right down. I said, "OH! She does that when she wants to sleep!" So I felt encouraged. The anethesilogist pulled the blanket corner back to peek at her and start to show her the plastic mask they would use to put her to sleep, and before he could explain anything, Katya snaked her hand up so fast he hardly knew what happened, snatched that mask and clamped it right over her face! CLEARLY she remembered and knew exactly what needed done--because last time THEY held the mask over her face!

The surgery staff were surprised, but of course terribly pleased. "You want to do it yourself, baby? Oh we can roll with that!" and they quickly hooked the mask up to the hose and let her put herself to sleep! So, there is Katya, plastic mask clamped with one little hand on her face, sporting her bright red sun glasses with polka dots, and making "P" sounds as hard as ever she can in response to my encouraging her to do that as she breathes in such deep breaths when she tries to make "P" sounds. All of a sudden, Katya lifted her glasses up on to her forehead, took a long, deep hard look into my eyes with her baby blues, and then was out, just like that.

The glasses left the OR with Mommy, and were returned to her in PICU once she was out of surgery 12 plus hours later. Her swelling was too much to wear the glasses for the first several days, but after they got her swelling under control the second time she was in PICU, she began sporting them again, especially to sleep at night (great way to block out the PICU lights) much to the great amusement of the nurses. She put a lot of smiles on the medical staff's faces when they would see her and she got a reputation among everyone for her sunglasses. And a few other things as well too, but those are stories for another time!

Tuesday, April 3, 2012

Katya out of hospital

From Amy-
Apparently a bug and/or virus is going around the hospital and Dr. Carson didn't want Katya to catch it, so he let them check her out today, provided they stay in Baltimore. she's got a follow up on Thursday which pending good outcome, they'll be heading home Friday. (Please, please, please, God!) Her head seems to be a tiny tad better today as far as swelling goes, it's definitely not getting worse (hasn't for a couple days now). So hoping the medication is helping drain off the excess fluid and maybe the swelling will begin going down tomorrow.
For your prayers and support we are continually grateful!

Head Swelling

From Amy -
Well, I said in the last post that the swelling of Katya's head was not that bad, but apparently the one set of docotrs that said it was just normal post-surgery swelling were wrong and Dr. Carson says that it's evidence of a leak somwhere. So he put her on a new medicine that is supposed to drain off the fluid and allow it to heal itself.
*If this does not work*...
The fallback option is more surgery. This is something NOBODY wants to think of right now, the idea is next to terrifying...another 2.5 weeks of this stress...not sure if anyone can handle that right now!
PLEASE PLEASE PLEASE pray that the medicine does it's job and Katya's body can fix itself with the med's help. Katya seeems to be in great spirits even with her head swollen like a water balloon. She did go for a rather lengthy walk, and has been a couple other times, so she seems to be pain-free or at least compared to other pain she experienced, it's not as bad.
She was allowed to put on something other than a shapeless hospital gown...a monkey nightie that Kristina and I picked out at Kohl's and sent in a care package to her family that arrived Monday. Let me know if you have interest of sending anything to them, and comment with your email address. I'll delete your comment after I see it so your email isn't just floating out there (so you mght want to leave seperate comments...one comment with whatever you want to say in response to this post and another with your e-addy). I can email you the address directly where you can send things to the Duecks. They will appreciate any comfort they can get.
Whew, that was a long post. I will leave you with a few pictures from Charity's blog...
She was in a good mood PRE walk...note the cross eyed spinning
She helped the nurses unhook her monitors, which she knows how to do as well as them by now. ;)

And when she got back, she was very very happy!
I am told it appeared that she was plotting her escape on the walk...paying close attention to the doors and stairwells. :)



Sunday, April 1, 2012

Update

From Amy -
So sorry I have not updated! It completely slipped my mind. Katya is doing a lot better. After it was insisted that they give her FOOD...real FOOD with good protein her heart rate almost immediately jumped back up where it should be.
Katya is doing much better. Her head is swelling up a bit as of last night and this morning, but it's not EXTREMELY bad and she was allowed to get out of bed and walk today for the first time since surgery, so everything else is doing well.
Feeling more encouraged than ever that the end might really be in sight. Your prayers are still welcomed, encouraged and we are forever thankful to you for them!!