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

Dr. Ben Carson on Katya Dueck

Thursday, October 27, 2011

Katya's BIG DAY

After a very restless night at a friend's house, with Katya thrashing and falling partially off the cot (repeatedly) on one side of me, and Paul not sleeping well and doing a lot of thrashing on the other side of me in the bed, I finally fell into a very deep sleep (on the floor so I could keep pushing Katya back into her bed) right before 6:30 a.m. Not worried about the alarm going off, to wake us, since Paul had assured me he'd set it, I was started to have someone bending over me whispering that it was 7:00 a.m. and hadn't we wanted to be leaving the house by then?!

Thankfully, since our alarm did not go off, we were bailed out of what would have been a big bad problem by our hosts! We had been figuring on a 7:00 a.m. departure time giving us way plenty of time to arrive at the hospital--so even though we left the house at 7:20 a.m. (with Paul unshaven) we still got to Katya's appointment with about 15 minutes to spare! Thankfully we had good friends who functioned as our alarm when they realized that we weren't stirring.

I liked the staff I had to relate to in radiology again very much, just as I did when we were at the same place for Katya's CT scan. I found them very caring, very thorough and gentle with Katya. They were able to get the IV placed on the first try without any digging and Katya only cried a little bit right during the placement of the IV, and then again when the meds first started through she cried some due to the stinging. I was able to hold her in my arms and whisper and hum to her, and she soon went to sleep. Since it turned out that Dr. Carson had ordered an MRI of her brain as well as her spine, the procedure was anticipated to take around 1.5 hours. I decided to go wait the time out with Paul in the quiet of the cafeteria instead of in the MRI room with the noise of the MRI machine for that long of stretch of time. I'm well aware of how noisy the MRI machine is after sitting through it three times with another child of ours. Since that child was awake, it made more sense for me to stay as a reasurrance to them. With Katya, she was asleep, so after reassurances from the staff that they would DEFINITELY call me before she started to wake up, I left to do some self-care in the form of a bathroom break, and some food and water.

As it turned out, Katya's proceudre ended up taking almost an hour longer than anticpated, as she had some complications, so those last 45 minutes were really dragging and kind of made us feel a bit nervous as no one was telling us anything. I finally did go ask if they could call back and find out and they came back with a report that it would be around another 20 minutes--that there had been some complications but she was doing fine now.

The nurses were as good as their word and I was taken back to recovery while Katya was still soundly OUT. So she got to be woken up by Mommy (even then it took awhile till she was awake enough to notice I was there) and I got to be the one to try to coax sips of juice and to help her get some Goldfish crackers.

Turns out that Katya had ended up not staying sedated nearly as nice as they had thought she would. She "fought" the sedation and they had to keep redosing and finally had to add  an additional drug to the one they had started her out on to get her to stay out deep enough to get the MRI's done. Then due to her deep level of sedation, her airways were so relaxed that she kept having all the mucous from her allergies drain down her throat and make her keep coughing which messed up the MRI images, which meant they had to keep re-doing segments. I'd told the staff prior to sedation that I'd made the call the night before to give her the usual allergy meds she takes and so I hoped it wasn't a problem but I hadn't thought that having her allergies running rampant was going to be a good thing for them with anethesia. They assured me I'd made the right call--and when she was in recovery, they brought it up and said that they were sure thankful I'd done that as they wouldn't have wanted to see how it was if she hadn't had her meds! The staff ended up having to suction her lungs (poor baby) but all seemed to be well by the time they finally let her out..

Katya was wobbly and uncordinated for about 2 hours after we were discharged but they had warned us to expect that. She seemed perfectly fine (just very sleepy) by the time we put her to bed tonight, and was giggly and playful.

Some interesting things yet from the day: The staff commented several times about how surprised they were to learn that Katya had only been with us since the end of June. "She seems so very comfortable with you!" Yes, I would say her attachment is coming along nicely  . . . I've really noticed since Katya had strep throat that she is much more concerned that I be the one holding her etc. She used to obviously prefer Daddy to Mommy, and was just about equally fine with with Daddy, Charity or Mommy taking care of her. Now she obviously shows a preference for me. I'm supposing it's a healthy developmental stage at this point in Katya's life and we are happy to see that she knows Mommy is her big advocate and protector. ;-)

Katya touched Charity's arm in the car today when she wanted to get her attention that she wanted more of the snack bits Charity had been handing out to her and Chad! That is SOOO exciting to us, as she used to not seem to have any concept that a touch could direct our attention (eyes) to her so she could sign! ;-) That's a FABULOUS sign of progress! YAY! I can only seem more and more communication ahead of us!

And  . . . tonight, just being a bit goofy, I said, "Katya, you will need to brush your 'toofers' "  She turned, headed right to the bathroom and got her tooth brush and paste out! Now she's only been home since the end of June, and I didn't even know she knew what we meant if we said to brush her teeth, let alone using 'toofers' on her which is NOT what we usually say! I wish so much we knew how much English she actually understood, but it's obvious with each passing day that she really does understand more and more!

Thank you to everyone who has prayed for Katya and our family . . . we will be eagerly waiting to hear what Dr. Carson and Dr. A, Katya's orthopedic Dr., say about the MRI's. Hopefully this time the news will be something that gives us hope . . .

Tuesday, October 25, 2011

Nothing to Be Done

Today was another disheartening day. Katya saw the orthopedic dr. for the issues with her elbowS. Yes, that's right--both elbows have something obviously wrong with them and she has limited range of motion in both arms.

After carefully examining her, and then getting X-rays done and him studying them carefully, Dr. A. said that Katya was more than likely born with this condition. He said you sometimes see it in cases of abuse or an accident, but typically that would only be one elbow. So he was calling it a congenital issues--and the offiical Dx is "Congenital Dislocation". Dr. A. stated that surgery will not help, and that PT to try to increase her range of motion is contra-indicated. However, she can have OT/PT to try to help her find ways to adapt and compensate.

Needless to say, having this blow on top of the one about her eyes has left us reeling a bit emotionally. We want all the best for our dear sweet girlie and to have one blow after another heaped on her just doesn't seem fair . . . why should one kiddoe have so many strikes against her?

The good news in all of this I think though is that she is with us . . . and we will do every thing in our power to help her and to help her lead as typical a life as possible . . . even though she can't sign some signs "properly" due to limited range of motion, we will help her learn to adapt signs. Even though she can't zip or unzip herself, we can find clothing that doesnt' need zippers or help her if she has a zipper with cheerful hearts. We will expect lots from her, but not expect the impossible.

On a more cheerful note, the heart of Dr. A. was touched and moved as he learned bits and pieces of Katya's story and watched her interacting with us and moving around his office. When he left he said that Katya had certainly made his day and put a smile in his heart, and that he is so happy to have played a small part in her life. I know he meant it, as later when we were waiting for the final paperwork, I heard him talking down the hall to one of his nurses or techs about how "she certainly made my day--put a smile on my face!"  Yes, our little gal seems to have that effect on people! When they hear a bit of her story and watch her . . . I often see their eyes become shiny with tears, or their face gets soft and their heart touched. Sometimes I say that to know Katya is to love her . . . and I think there is a lot of truth to that.

Last week on Friday Kristina had a friend over here playing doll with her. I don't know if that is what prompted Katya's sudden interest in playing with a doll later in the evening or not, but I wouldn't be surprised! She played with one doll, and then the next for quite awhile that evening, even taking the dolly over to play the piano!

Katya was ready for bed and in her PJ's . . note how lovely her hair is becoming compared to at first!

Trying to get dolly's sleeve to stay up so she could play right!

It was so fun to watch her enjoying PLAYING something that was so just like any little six year old girl might do!
Thursday is Katya's MRI. Please be in prayer for her and ask anyone who might be willing to pray for her to pray too. Pray for peace for Katya, peace for us, and for us all to be able to cope with whatever the MRI shows or does not show  . . . pray for Dr. Carson to have God's wisdom as he tries to plot the next step in this journey for Katya.

Wednesday, October 19, 2011

A Rough Few Days

Just a little For Your Information--brought free to you by courtesy of me. . . .

If you are wanting to bless and support a family who is parenting a special needs child, kindly don't suggest that the reason the child has some specific physical problem (which has a good, solid diagnosis already, no less) is because they are possessed with evil spirits. And should you error, and mention it, kindly don't continue to try to press your point after said parents have tried to gently and kindly let you know that while they believe God is the great Healer and could choose to miraculously heal their child,  they are satisfied that evil spirits are not causing their child's issues. Ok?? It really isn't helpful . . . not at all.

We are dealing with ENOUGH ALREADY emotionally, physically, financially and spiritually. We do not need that kind of "help", no matter how well-intentioned it is.

Do I believe that there ARE evil spirits? Absolutely. Do I believe in praying and rebuking them in Jesus' Name?? Absolutely. And I have had some occasions in some of my children's lives where I felt demonic oppression and have prayed for there to be freedom for my child in Jesus' Name. Not in a loud, public showy way that would scare the child. Just quietly and privately, between God and me. And I have seen there be changes--huge changes. But there is no need to become a paranoid "demon-behind-every-bush" person. I do not believe that clear-cut physical issues that have a certain Dx that makes all the sense that can be,  are demonically caused.

So yes, please let us know you are praying that God will miraculously heal our children if it's His will. But stop there. Just stuff a sock in it, and don't go further if you truly believe that demonic possession is causing our child's physical handicaps/illness. Keep it to yourself, and simply pray. That will help us the most.

Katya's eye exam on Monday was another emotionally draining day. Paul and I took her and I'm so glad he was with me.

Basically in a nutshell, after being examined by two residents and two fully licensed and accredited Doctors, everyone agreed that glasses will *not* help Katya see better. Since it's obvious Katya does not see well, they are strongly suspecting that what has happened is damage to the nerves that convey the information her eyes see to the brain for interpretation. They said that either cranio-stenosis AND/OR starvation could have caused the damage.

Needless to say, this has been a tough thing for our family to deal with, and tears have been shed. I personally feel very affected by it as I know how poor my own vision is, and how lost and miserable I am without my glasses. It is very hard for me to think of my little girl going through life with such poor vision as she appears to have . . . Very hard.

Katya also (no surprise) needs surgery on her eye muscles to help them but the Drs said they will not even talk about doing that surgery until she has had her cranial reconstruction, because it would be an utter failure if they attempted it prior to that.

Now in the midst of all this glum news, you might wonder, was there any GOOD news? Yes, there was. The good news is that Katya does not have as major of issues with her eyes working together as they would typically expect to see in a child with her level of cranial/facial issues. They said that means she does have less issues with depth perception and such. So that is a good thing!

And as to why she is "squinching" so much of the time recently? Her eyeballs have pushed forward so far due to the growth of her brain that she is having issues with dry eyes . . . Artificial tears are what Katya needs. That at least isn't a big issue, as long as we can get them into her eyes. After her two recent experiences with eye drops at the Drs offices, I don't think it's going to be a lot of fun getting them in several times a day! Poor girlie . . .

Wednesday, October 12, 2011

We Have an Appt.

Miss Katya has an appointment for the 27th, at 8:15 a.m. for her MRI.

This will be an MRI with full sedation. Please pray for wisdom for the staff who will be working with her, and that they will be sensitive to her newly adopted status and allow Mom to stay with her until she is asleep and be again with her as soon as she is out of the MRI machine. Pray that if there is a problem that is causing her gait issues that it will be clearly revealed.

Thank you.

Tuesday, October 11, 2011

And Now For an MRI

The decision has been made by Dr. Carson to have Katya get an MRI of her entire spine, due to the continuing foot-dragging and clumsy walking. Long gone are the days when we used to comment on her graceful walking and running. Now, it all looks ackward and clumsy. Poor Katya!

Dr Carson  wants to make sure that even though the gait issues started happening in conjunction with her head bulging as her brain grew, that it's not connected to anything going wrong with her spine that we aren't aware of. He said he would hate to rush Katya into surgery for her head only to discover that she still had gait issues after surgery--that were caused by something else! We agree, and feel that the MRI is a very sensible course of action, even though it means GA (general anethesia) for our wee girlie, and that is scary with her relatively uknown medical history.

We are going to choose to commit her (again) into God's hands and proceed with faith, knowing that God has kept His hand over Katya in amazing ways from the day she was conceived. We will try to update once we have a definite date and time, but it's looking like it will be either the 24th of this month or the 27th.

Next Monday we also have a very important eye appointment--that one will be to hopefully determine whether or not glasses will help improve Katya's vision (I fully expect that she WILL need them) and if so, what prescription! I feel very hopeful and excited about this appointment as Katya LOVES to have Charity's glasses put on her. Her little face lights up with alertness and joy, and she will guard the glasses with her hands so no one tries to take them back too soon, as she looks intently and eagerly around. The way her entire face, eyes and body change each time she has the glasses on, I would be SERIOUSLY shocked if glasses aren't in her best interests!

After the bout with strep throat, Katya was still pretty wiped out and had little appetite for days. But in the last few days, her appetite has come back with a vengeance and we laugh at how she tucks into food again! She's actually getting a little extra tummy, and we love it!! She's still so scrawny else where on her body (even though she is MUCH improved from her starved condition just a little over 3 months ago!) that we will continue to let her eat all she pleases of good, healthy food. We were able to pack away all her size 3T clothes a few weeks ago, and most of her size 4T. She's now wearing mostly 5T and a few smaller 6 items. (If anyone is interested in her gently worn size 3T and 4T clothing, let me know--I'll be happy to sell it to you!)

Other happy and exciting things: Katya is now initiating using a handful of signs to communicate her needs. She can and does sign "toliet", "thirsty" "more", "yes" and shakes her head for "no". She also has a few food signs she tries to use, but so far she hasn't figured out that they are specific to an exact food, and she will trot them out and use them whenever she sees a food she wants! However, at least she IS communicating, and we are SO thrilled! It's also been QUITE helpful in reducing her screaming at least 75% and I now feel as if my nerves are recovering to a long extent! (When you again and again and again have unexpected ear-piercing screaming day after day, week after week, it does something really wierd to your nerves . . . at least, it did to mine . . . )

And best of all??? Katya started making the "s" and "t" letter sounds--IN HER SLEEP! ;-) Since she sleeps with Charity and Kristina, Charity alerted us to that important fact, and we and then the school, once we informed them, set about to work with her while she was awake to try to see if we could elicit them in her waking hours! I'm so extremely proud and thankful to tell you that Katya can and does make those sounds--and in addition, she is now making the "m" and "f" sounds! Everyone is feeling much more hopeful that this could be the very EARLY start towards speech . . . who knows, but it's certainly an encouraging sign! Her favorite group care-giver would be SOOO excited and proud if she knew, I know! She kept trying to impress on us that she had worked with the same orphanage for 20 years, and that she was SURE Katya was just as smart as any other kid--she just couldn't speak so no one knew. I figured that if she had worked at the same orphanage for 20 years, she just had a pretty good handle on the situation with Katya, and it gave me a lot of hope and courage.

 Well, those of us who are working closely with Katya see so many, many changes in her each  day as she becomes more secure and knows she is a loved and wanted child! And I can only imagine how many MORE changes there will be in the next 3 months if she continues on at the pace she is going! I hope some day we can send a video to the orphanage of Katya--SPEAKING. Wouldn't that just be amazing??! ;-)