"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, October 30, 2013

Home Work

One thing that is new for Katya this year is home work. She has a Special Ed teacher who believes that home work is very important and always tries to send home a variety of it for Katya to work on each night. She also includes a book or two (sometimes three!) that Katya has chosen from her carefully selected library collection or from books the teacher has collected from our local library system. Katya enjoys us reading them to her.


Her attention span for books is improving greatly! You would never guess now that she was the child who came home and would scream and try to take the books away from us when we read them to her!

She also has a lot of flash cards and written work. I think her teacher does a good job of trying to provide variety in what she sends home each evening.

Charity and Kristina are very helpful in assisting me with Katya's home work. Especially the signing portions--their grasp is better than mine and so it's easier for them to quickly flash through the cards with Katya. I'm way behind where they are at with ASL, even though I continue to add new signs regularly!

This week they are starting to teach Katya how to read and sign sentences such as, "I want a book" or "I like a bike." I love what the Special Ed teacher said at the IEP meeting--"At this point, there is no telling how high and how far Katya is going to go. I'm going to let her soar as high and as far as she can go, and I'll be behind her pushing her on!" YES. Exactly.

Monday, October 28, 2013

Guest Post

My daughter, Charity wrote this for a school project, and I asked her permission to share it with my blog readers.

Charity interacting with one of the kids who comes to the Support Group

Many years ago, a Blind Man received spiritual sight, and became a Christian.  Shortly thereafter, it happened that he was going to move to a Distant Town. The Blind Man's Pastor was concerned that he have a church to call home, so he called up the pastor of the church in the Distant Town, and began to explain
 the situation. "I have a recent convert," his pastor said, "who is moving to your locality." "Wonderful!" the Distant Town's pastor cried, "tell me about him!"

 "Well," said the Blind Man's Pastor, "the thing is, he's blind, and would need
 someone to take him to and from church." A frozen silence crystallized on the
 other end of the phone line.

"Oh," said the pastor of the Distant Town, dismay seeping from his voice, "I don't think our church has a place for those kinds of people," and ended the phone call.

The Blind Man's Pastor was grieved, and angry. But he was also a man of
 God. And so he began to pray for the church in the Distant Town. The Blind Man's
 Pastor prayed that day, and the next. He prayed even after the Blind Man moved
 away to the Distant Town, and he was no longer the Blind Man's Pastor. Every
 time he prayed, he prayed that God would give the church in the Distant Town
 God's heart for people with special needs. The Pastor prayed for many years. He
did not spread stories about how horrible the pastor in the Distant Town had been.
 He just prayed the same prayer again and again, "God, please give the church in the Distant Town Your heart for special needs."

Years later, but not so very many years ago, the Pastor was still praying for
 the church in the  Distant  Town. The Pastor was still  a Godly man, and was still
trying to help the people with special needs in his own church. One day, he went to
 a conference to learn new ways to help people.  And there, in front of him, was a
 table set up by the Distant Town's church,telling about their disability ministry.
 The Pastor cried with joy-- God had given the church His heart.
 This is a true story--the Distant Town is my town, and I sometimes attend
 the Distant Town's church with my family. I have met the Blind Man's Pastor's
 parishioners, who tell me that their Pastor is indeed a man of God.

 The Blind Man's Pastor did not divulge the exact year that he began praying,
 so we do not know who was pastor of the Distant Town's church at the time.
 Perhaps it's for the best. Who knows why he acted as he did. Did the Distant
 Town's pastor think, as did the Pharisees in the Biblical account, that blindness of
 the eyes must be caused by blindness of the soul? (John 9)

Was he frightened of what he did not understand, and was revulsion born of that
 fear? Did he think, somehow, that a disability is catching? I doubt we'll know on
this earth, and when above or below it, as the case may be, I doubt we'll care. But I
 hope that before his death, his heart will be expanded with a Christ like love for all
 people, regardless of physical or mental disability.

 Sadly enough, the stories about believers being refused spiritual nourishment
 because  of their disabilities are not unusual. Perhaps other churches might not be
 so crass about it, and might go about saying the same thing more circumspectly,
 but many churches have a difficult time knowing what to do with people who have
 This past summer, my family received the wonderful opportunity to attend a
 Joni and Friends family retreat. We were able to meet many other families who are also affected by
 special needs.
  Many of the families said they were discouraged with their church's lack of
 understanding, compassion, and accommodation for special needs. Some families
 said that they had even stopped attending church because of it. Here's a sampling
 of some of the problems mentioned:
  *Special rules made in Junior Church specifically for children with Fetal Alcohol Syndrom to follow.
  *A child with autism being labeled "rebellious" because he has Delayed Auditory Processing and doesn't respond immediately when spoken to.
  *A lack of understanding of the extra financial, time, and emotional constraints that caring for someone with a disability brings.

How can we expect stressed and hurting families to remain in such an unsupportive
environment? And yet, as the body of Christ, we cannot afford to alienate any of
 our members.

If you were short sighted, would you blindfold yourself? As Corinthians 12 says
 about the body of Christ: "21 The eye cannot say to the hand, “I don’t need you!”
 And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those
parts of the body that seem to be weaker are indispensable" (NIV) The Church,  as a whole, needs to embrace their members with special needs and disabilities.  Families and individuals who deal with and have special needs require extra care in some areas, but have much to offer in others. Because of the
 uncertain nature and challenges of many disabilities, those who deal with them have increased opportunities to learn about The Goodness of God in adversity, living by faith, and dealing  with tragedy. 

However, it is easy for both The Afflicted and their Caretakers to be ensnared with
feelings of bitterness, isolation, desperation, and depression.    Without the support
of a church, it is all too easy for people to walk away from The Church entirely.

It's difficult, I know, to relate to people who look or act bizarrely. As an
example, my brother, who is on the autism spectrum, when younger would fall
to the floor  and roll away if anyone tried to shake hands with him. It was only
when he was about fourteen that he finally learned to shake hands.
Light touch also hurt him, so someone casually touching his hair or
shoulder was a bad idea. If someone didn't know, or forgot, they might get
punched in the stomach at worst, threatened with biting if they were lucky, and if
he was in a particularly benevolent mood, he would merely drop to the floor and
take refuge under a piece of furniture, from where he would glare and growl.
While those days are long past,  I remember them very well, and how people who
didn't understand would stare with morbid fascination.

 Talking to the Caregiver or Parent is a great way to begin understanding the
 people  with special needs in your church and community.  Relating to people with
disabilities is a lot less scary when you know that Johnny  hates high-pitched
 voices, or that Susie loves it when people spin her around.  People  become human
 when you know that Billy, though he can't eat solids, can eat cotton candy, and
 that while Ms. Janie can't talk, she loves to sing. Bobby can't sit still for more than
 a minute, but he is a fount of knowledge on the  topic of vacuum sweepers, and
Mr. Anderson, who always belts out an off-key "Amen" 30 seconds after the
 preacher says it, is a mechanical genius and can fix nearly every kind of car ever

It's surprising, really, what you can  learn when  you pay attention and ask caring,
respectful questions.  Most parents of children with special needs will be happy to explain how to
relate to their child. In fact, I know quite a few families, and I can't think of any
who wouldn't be willing to help you understand their child.

  One of the very best ways to help a family or caretaker, is to figure out what
you could do to help, and then offer to do it. i.e, “I'll be going into town on
 Tuesday, do you need me to take Susie to her piano lesson?” or “Do you need
 someone to come water the plants while you're in the hospital?”  While offers of
 “let me know if I can do anything to help,” are well meant, in many cases they are
impractical. People who are overwhelmed by medical and therapy bills, the
 copious amounts of paper -work that inevitably come with such things, and the
emotional and physical needs of their children, are doing good to get out of bed in
the morning. Expecting a burnt out family to figure out what is possible for a well
 intentioned “just let me know” person to do is highly impractical.  It is far, far
better to follow the example of an old gentleman, who made it his life's mission to
shine the shoes of the recently bereaved.  Whenever there was a death in his small
town, he would go to the affected house the night before the funeral, and collect
 the family's Sunday shoes, which he would then return the next morning, blacked
and polished to a shine.  He found something to do, and he did it.

Even small acts of service can be large blessings.

In the past, ignorance might have been a valid reason for leaving the disabled in the lurch, but today The Church has no such excuse.   Ministries such as Key Ministry (www.keyministry.org) and Joni and Friends
(www.joniandfriends.org) exist to help churches and individuals better serve their special needs members,
 and reach out into the community. They offer starter kits and directions for starting ministries, helpful articles, interviews, relevant news articles, and guest posts by people who know.
 As for the church in the Distant Town, it has fulfilled the Blind Man's Pastor's prayers, and more. It now most definitely has a place for "those kinds of people".  The church in the Distant Town has been taught how to relate to people with special needs, and  offers  services to support families, such as a staffed
sensory room for children who are overwhelmed by the main service.
 Every month over the school year, the people in the Distant Town's church
 hold a party for children with special needs and their typical siblings. It is not
 necessary to be a member to attend. There is food, games, Bible stories, music, and balloons. The teens with disabilities put  on a Bible-story skit, and sometimes help lead  the   singing. There are crafts and fellowship for the mothers, and dads have begun attending, as well. I have been attending with my siblings for two years now, and would hate to miss it. The parties are full to capacity every month,
with more people who would like to come but can't due to space and staff constraints.
 Ironically, the church also now runs a bus ministry, for adults with disabilities who can not drive themselves to and from church.  People who could not attend a church because of their children's  special needs
 now attend the church in the Distant Town, and are welcomed with open arms.  Under the care of The Distant Town's Church, I have seen families go from complete and utter emotional and spiritual exhaustion, to having new life, quite literally. Jaws have relaxed, smiles reach the eyes, gaits have become sprightly,
 faces look years younger.
 Because the Blind Man's Pastor prayed, many lives have been touched through the Distant Town's church, including mine. By embracing the special needs community, the Distant Town's church has strengthened the Body of Christ.  Unfortunately, such supportive churches are a rarity. But that can change, and that change could begin with you.
                                                                                               --Charity Dueck

 Katya having fun at a evening picnic sponsored by the local church's disability ministry.

Friday, October 25, 2013


Wednesday Charity harvested the dill in our garden.

Photo: Dill from our garden!

Yes, it really was impressive!

Some heads were around 10 inches in diameter.


After giving some away to local friends, Charity strung the rest up in various places around our house to dry.

Our dinning room has some.

 There is dill in the living room, dill in the sewing room, and dill in the living room too! Even Chad's bedroom has a few bunches hanging there to dry! One thing is sure, I think we will have plenty of dill this winter to season our chicken noodle soups and other dishes!

Very grateful that the garden produced such treasures for us this year!

Charity is of the opinion that if you want "country decor" adding bunches of genuine dill to dry is a good way to achieve the look in earnest. I think she is on to something!

Getting Ready for Cold Weather

I have been working towards being ready for cold weather all summer and early fall in little bits and pieces. Picking up warm clothing at the thrift store or on the sale racks, and stashing it away for when the cold hit. The cold hit this week, and I was glad that I could switch out Katya's clothing drawers and get her set up for cold weather without having to go shop! We pulled out most of her warmer weather clothing out and stashed it in a tote. As she has grown larger, her clothing has grown larger too and the drawer space which was once adequate no longer is! Now that I have every thing sorted through and put away, I can see she will need an item or two here and there but really, she is well prepared for the most part for this cold weather. I'm grateful that between the things I found, and a few things that were given to us that Katya is provided with warm, soft and lovely clothing for winter! What a blessing!

I've been selling the warm weather things I know she will not fit into next spring. That has meant taking photos, listing items and then when they sell, packaging and taking to the Post Office. I'm grateful that we can sell what she has outgrown since Katya has moved through lots of clothing sizes in the little over two years since she has been home! From size 3T and now selling size six bottoms, and size 7 tops!  Katya is officially wearing size 7 bottoms, and size 8 tops!! That is a LOT LOT LOT of clothes sizes in just a little over two years!!

From having no interest in clothing when she first came home, to being highly interested in her own clothing, and having favorites and recently even one dress that she absolutely refused to wear no matter what, Katya is changing emotionally along with her physical growth!

Wednesday, October 23, 2013

Evening Fun

We started our own vanilla making again one evening recently. Last year was the first we had ever done our own, and it was so successful, we decided to do so again this year.

Todd came along while I was stuffing vanilla beans into the alcohol, and wondered if what he had always heard about alcohol being highly flammable was true. I poured some off for him to experiment with.

It was a highly successful experiment.

Chad decided it was a good chance to try an experiment of his own--roasting a Peep candy!

Chad thought that was a success too!!

And as for me, the vanilla making process is coming along QUITE well this year, using a stronger "proof" of alcohol than we did last year. This is how the bottle looked just the next morning--about 11 hours after I started it! It's much, much darker now!

I try to shake it every few days good, and then put it back on the dark shelf. I'm anticipating giving some away for Christmas!

Friday, October 18, 2013

Mother-Daughter Trip

After carefully setting up "supports and services" in order to pull off our annual Mother-Daughter trip, we were dismayed on Friday to have the phone ring as we were about to walk out the door about 30 minutes or so after school started, with a message that Katya was holding her belly and whimpering. I said that I would call Paul and see if he could come check on her before he got too far out of town on his way to take Chad for a field trip to the zoo. Thankfully, I was able to catch him, so after a brief discussion, Paul decided to come home, grab some meds in case she needed them, and go to the school to check on her. I decided to wait to leave town till we were sure Katya was stable. By the time Paul go to school, Katya seemed to be feeling better--he couldn't determine that anything was wrong, and the Aide in fact said she was acting better. So we concluded that possibly she had some transient pain . . . that it had passed, and it was safe for the girls and I to leave.

So off we went, sewing machines and sewing projects in the back of the van, heading for our friends. Usually we spend Friday and Saturday shopping, but since the girls and I have had so little time to sew, we agreed that it would be nice to spend at least part of Friday working on some projects. The girls both had quilt tops that they needed input from our friend, Ann, for, because believe it or not, I'm so NOT a quilter, especially when it comes to doing math and figuring out sizes . . . Good thing I have a friend who can help the girls when I can not!

After being deposited wrongfully on the back-side of Akron, when our Google Map print-out failed us, Charity thankfully was able to pull up a fresh set of directions on my phone (Thank God for technology at times like this!) and we eventually wended our way to our friend's house after taking many, many back roads!

Charity was able to get the help she needed with figuring out her quilt, plus get most of her skirt she was working on sewn. Kristina was able to get all the blocks on her quilt top sewn together in strips, and I got some input on a pillow cover project I have going on, plus I took a much needed nap!

Then it was time to get ourselves freshened up and tool off for the evening's fun!

Yes! A tea house! Kristina thought it was a lot of fun! And with a little effort, we were able to get a dairy free meal for her.

This is what I chose, and oh was it good! Especially the soup! I could eat that Butternut soup again any day!

Charity enjoyed this meal.

My friend, A, got this plate full of goodness.


Her daughter, Amy, got this one.

We unfortunately did not get a good photo of us all together but I snatched a few on my phone to send to Paul so he could show them to Chad and Katya.

Photo: Supper fun!

Charity snapped a few shots of the interior as we walked out.

And one just for a friend of ours . . . .

After a nice relaxing evening, we went to bed, determined to get rested for the next day's adventures!
 Mr W. very kindly started our day off right with a good breakfast, and then off we went. We only went to one fabric store this time, and not a very large one, but that was fine for this year. We haven't had as much time to sew as we had hoped for, and so we didn't need much fabric.We each found a few special pieces after long and careful determination. Then we departed the shop happy after a quick photo shot by the owner of J'Ellen's

We also did some browsing in some other stores. Stopped by Trader Joe's to get sandwiches or salads from the deli fridge and ate them outside in the sun. We then concluded our day by getting cold, sweet treats at a yummy ice-cream/sorbet shop where you could create your own tasty treats.

Fortunately for you, or unfortunately, depending on how you feel about tons of photos in blog posts, we did not take any photos commemorating this day other than the one you see above at the fabric shop.

After getting back to our friend's house, the girls and I loaded up the van and headed for home. We got home in time for me to rock Katya before she went off to bed, so she was happy! She had a hard time with us being gone, and in spite of us talking to her on FaceTime and on the phone, she was pretty sad off and on. Thankfully, she did find moments of enjoyment anyway, and had a great time running around Saturday while at Chad's soccer game, and she also enjoyed going out to eat with her Daddy and Chad and a friend at a local Chinese restaurant.

So our Mother-Daughter trip of 2013 ended, all too soon it felt like . . . it would sure be nice to be able to make it last a little longer, but as long as Katya has such a hard time with Mommy and big sisters being gone, I think we need to be sensitive to that. She is not nearly ready to accompany us on such an outing, since she really does not enjoy shopping more than about for a 20 minute stretch, so we try to juggle meeting her needs and yet meeting the needs of our other kiddos.

Thursday, October 10, 2013

How School Looks At Our House

Today Kristina said to Chad, "Chad, I'm going to soon need that Ipad to do my school!" Chad's response? "But I'm doing my Algebra!"

What?! Algebra?! An 8 year old! Yes, this is what school can look like at our house . . .

Photo: Todd helping Charity with her Algebra, and Kristina helping Chad with his.

Charity and Chad are both doing Algebra. Todd is helping Charity, and Kristina is helping Chad. "But they just look like they are playing on Ipads!" you cry.

Well, yes, it would look that way. But in reality they are playing on the DragonBox2 App. Charity because she needs the help with strengthening her Algebra skills, and Chad because he thinks it's just a fun thing to do, and likes the idea that he is learning the same things as his big sister--just at a slightly slower rate. Since Kristina has learned some basic principals of Algebra already, she can help Chad. Todd of course can help Charity with her more advanced levels.

Todd is the one who convinced me that I should invest in this App because he thought it would help Charity. He did the research on it and gave me all the good reasons "why" it should be purchased. One of his arguments was, "Where else can you get a Algebra curriculum for her for $9.99?" Add in that math is rather challenging for Charity, and I could see his point. He persuaded me. Charity and Chad are happy he did. It's nice to know I have it on hand if Kristina needs extra help as well.

So while school at our house isn't all about Ipads and apps, we are finding additional ways to use them on top of the obvious--like Kristina's streaming school work.

Tuesday, October 8, 2013

Katya Update

#1. Right after we got home, we made an appointment for Katya to get further input about her body absorbing her skull bone. She'll see a Dr on the 21st, and if need be, we will get a referral on. We want to see what if anything can be done to help halt and then reverse this process.

#2. Before anyone asks, yes, we do plan to get a second opinion, and are setting things in motion to make that happen. This will be from another cranial-facial specialist in plastic surgery.

#3. We heard from Katya's eye Dr at Johns Hopkins today via a phone call. He said that after reviewing the information from her other Drs, he is going to recommend that Katya not have any surgery on her eyes right now. He said there is nothing wrong enough that it should be surgically corrected in a separate surgery. So no surgery right now for Miss Katya on anything. I told him that there is no way we want Katya to have any elective or "extra" surgeries due to how traumatic the medical things are for her given her past history of abuse and trauma. He said definitely not, and seemed to "get" that on a level some have not. I'm grateful. He wants to follow up with her again when we return for follow-ups to her other Drs at Johns Hopkins.

#4. We had a IEP meeting last week with Katya's school that was a pretty good one--especially compared to previous ones! It was almost fun! Not quite, but ALMOST. Lots of positive convo about Katya's progress, and lots of good cooperation. I'm grateful. There were 4 new faces on The Team that we had never had there before, so it was good that it was able to go so well. We will have the big official IEP meeting to re-write goals and such in December. Hopefully that meeting goes as well as this one did!
   Points from the meeting: The new SLP stated that she would agree with our suspicions that Katya is probably dealing with Apraxia. Katya is doing great with the Special Ed teacher and goes to her once in the AM for reading/writing practice, and again in the afternoon for Math work. The Special Ed teacher stated repeatedly that she really enjoys teaching Katya, and loves her sense of humor! ;-) Her enthusiasm is one reason Katya is doing so well this year, I think. The OT explained that Katya has made tremendous progress and is close to meeting her goals--she will need new ones by December! This is good news, but does not surprise me, given how much improvement we have noted on things. It also got clarified that we DO want ESL services continued AND emphasis still on teaching Katya to talk. There had been some confusion about that, so it was a good thing we requested the meeting to sit down, meet all the new faces, and just make sure we are all on the same page. It also gave us a good chance to update the school about Katya's recent medical appointments and the change in plans surgery-wise, as well as the on-going head-precautions that are definitely needed.

So, there is the current news!

Sunday, October 6, 2013

How We Amuse Ourselves While Waiting

We have spent sooo many hours and hours and hours waiting in hospitals, Doctor's offices, labs and pharmacies the last two years that we have become good at entertaining ourselves. Good?? No, make that VERY GOOD. Side-Splitting Good. Superb, actually. Crack.ourselves.up.to.the.point.of.tears GOOD!

The truth is, most of the time, by the time we get out, we can't even remember what we thought was so funny. We think oxygen deprivation does it to us, giving us some type of high that allows us to amuse ourselves but not remember afterwards. Or maybe it's the cleaning chemicals--or stress. Who knows. What we do know is that we are awfully funny while waiting--to ourselves. Most of the time, I bet no one else would find it funny.at.all.

However, this last experience of waiting in the Cranial-Facial Clinic for Dr Ahn and Dr Dorafshar, we went clear over the top. We 100% totally outdid ourselves--and remembered after we got out WHAT exactly we had cracked ourselves up with so badly that we were practically howling and clutching our stomachs.

It started innocently enough--after enough time had gone by, Charity put forth the idea that it would be funny to entertain ourselves by throwing a few beach towels out on to the floor, and turning on a Hawaiian music sound track on one of our phones. Oh.My.Word. The party was ON.

Beach Bag, Towel, Sunglasses, Isolated Royalty Free Stock Image - Image: 2609766

It didn't take much for us to envision a complete and utter 5 to 8 minute transition of the room, all with items we could easily walk into the room with hidden in our backpacks and tote bags.

Beach towels. A big poster with water and palm trees.  A handful of sea shells strewn about. A couple of pink blow-up flamingos.

Flamingo Birds Love Heart

Some leis to pull out and pop around our necks, and some grass skirts. Charity was sure we should also add a door curtain with streamers for the staff to peer through as they opened the door.

 And for the crowning touch, Katya as cute as anything in her swim suit.

Can't you just see the shock and surprise on the good Doctor's faces as they would open the door, and have all these things hit their senses?!

The more we talked about it, the funnier it became. And the funnier it became, the harder we laughed. Actually, to be honest, the harder we HOWLED. I don't know if they could hear us or not, but they maybe did--in a muted sort of way.

And then came the knock on the door. And we had to hastily choke down our laughter, and hastily be sober and ready to deal with whatever came next. . . . and boy, it was a doozy that came next wasn't it?? I'm so surprised that we were able to remember our hilarity and mirth of seconds before in the face of the spinning and verbal word games that got played with us after they walked into the room.

We'll probably never, ever re-decorate their exam room. But it was awfully fun to dream about. Yes, it was. Oh the looks on their faces if we would ever actually follow through. I think their normally placid looks would slip, and a lot of astonishment would show. What do you think??

What do YOU entertain yourself with while waiting at the Doctor's? Leave me a comment and tell me your best and funniest methods!

Thursday, October 3, 2013

A 180 Degree Spin Part 2

Tuesday morning found Katya in a fine mood.

We fixed ourselves breakfast of eggs and yogurt, and then loaded up our water bottles, paper work and snacks, and set out for the new Charlotte Bloomberg Children's Center at John's Hopkins. This was Katya's first experience receiving any services or care there--it was not quite open yet when she was last needing services at Johns Hopkins. Light, airy, and cheery, we were happy to get to experience the improvements for Katya's CT scan.

The waiting area was roomy, and cheerful.

Katya tired of the toy and then moved on to the books.

I had to think about how it was when Katya first came home--she would grab a book, hold it any old which way, flip through the pages rapidly and then pitch it. She had no idea how to hold a book, how to look at it from front to back. or how to treat it gently.

So much has changed! And in addition to all the afore mentioned points, Katya now will run her finger along the lines of type from left to right, studying them for words she recognizes.

And have you been noticing the back pack?? Yes, Katya's responsibility for her possessions that started in April has continued to be firmly intact!

In fact, when they finally called her back for the scan, Katya climbed promptly up on the CT Scan table as soon as she saw it, clutching her back pack. When the tech attempted to position the back pack lower on her body than where she was holding it, Katya clutched it firmly and gave most unhappy screeches! No one is to try to take her back pack or carry it for her! She is firmly convinced now it's in her best interests to hold that and hold it she will! Fortunately, when Katya realized we only wanted the back pack to be held lower on her body, and no one was taking it from her, she calmed down and was amenable.

The CT scan was done very close to her scheduled appointment time, so when it was done we had plenty of time to head to the cafeteria and get some healthy salad and what not for lunch. We took our sweet time to eat, and then headed over to the Neurosurgery clinic where the Cranial-Facial clinic run jointly by Dr Ahn and Dr Amir Dorafshar was being held. 

After we were finally led back to the exam room, Katya settled herself on the table and raided her back pack for entertainment. Paul, Charity and I soon began to develop the increasingly wonky sense of humor that we develop when jammed in a waiting room. Charity thinks it's due to oxygen deprivation from so many of us in one small room. I don't know for sure what triggers it, but we end up getting funnier and funnier to ourselves the longer we wait, and this time we totally outdid ourselves and were howling finally with laughter.

We were in a fine mood when the knock came on the door, and Dr D. swept into the room, accompanied by his PA, Megan, and Dr Ahn. Dr D. was very nattily dressed--clear to the navy tie with pink flowers he was wearing. And he was **The Man** as Charity put it. Dr Ahn towered over Dr D. but Dr. D. was front and center, and doing about all the talking and most of the feeling of Katya's head. Dr Ahn hung back, and was quiet and mostly just agreed with anything Dr D. said.

After taking a brief update on Katya's history, and looking at her head carefully, Dr D. spun us in a 180 degree circle. He said that things were happening with Katya that they never would have anticipated--that her forehead had actually improved some (part of it used to be much more "flat" than it currently is) and the back of her head growing quite significantly the last 6 weeks was also not something they would have ever expected in April.  He also went on to say that the CT scan showed that Katya's body had begun absorbing some of her skull bone, leaving it thinner than anticipated, and too fragile to work safely with right now. They said that they don't know why this absorption of bone happens sometimes, and they don't know what to do to stop it, so for right now, they wanted to hold off on surgery, "unless you tell us that you don't like how your daughter looks, and then we will do it." We went round and round verbally, trying to understand what exactly were their thought processes. Every so often we would get told again, "You would need to be the one to say you don't like how your daughter looks."

Well, thank you very much, I think that given what she has gone through, she looks great and I'm not going to say that! When they kept bandying the words "elective surgery" around, I finally said, "Well then that means we never need to do surgery on Katya, right?!" Their eyes widened--especially the Neurosurgeon's, and their response was, "Oh no! It NEEDS to be done. Just not right now."

Needless to say, by the time we were done with this confusing conversation, we felt like we had been spun a full 180 degrees, and didn't quite know what hit us. We were thankful that all three of us were present in the room and able to hear for themselves what was going on.

I truly felt like I'd just been placed as the end person in a game of "Crack the Whip" and was being jerked first one way, and then the other. Charity was so stunned and attempting to concentrate so hard on what exactly was going on that she never even got any photos! And we could have gotten a really nice one had she been able to capture Dr Ahn sitting on the exam table and bending his head down to watch Katya as she was rapidly putting together her "Connect" pieces, and then writing letters.

We suspect that some legal "posterior coverage" was going on, because it was clear that they were concerned about Katya's "soft spots" being a risk factor to her, and yet were evidently sure that the risk of letting them go right now was less than the risk of attempting surgery.

So the upshot of every thing is that we agreed to NOT ask for surgery, which seemed to make them happy, and we will follow up again in six months. I know neither Charity nor I were having peace about the idea of surgery--and neither did a lot of others--so I feel like this was God's clear answer to us even though it came in a really strange manner.

In the meantime, Katya is still on all kinds of head precautions, including no contact sports! Good thing she doesn't want to play football, huh?! And as to the bone loss--we are not accepting that there is "nothing to be done except watch and hope it stops". We are going to do our own due diligence, talk with some of Katya's other Doctors, and also reach out to someone in the adoption community that knows a thing or two about bone density loss, and get their input. I know their child had some type of special infusions to help with her situation--so I'm thinking there are answers and hope for Katya SOME WHERE.

When we finally got out of the appointment, we quickly went over to the Children's House, packed and cleaned up our little apartment area, and then set out for home.

We drove steadily except a quick stop for supper and the bathroom, and thus arrived home soon after midnight.

Now we are still left to process what happened in that meeting, and while we are extremely thankful that surgery has been pulled from the table FOR NOW, it leaves us hanging in the air having NO idea when surgery will happen . . . or how to plan our lives . . . this had seemed like good timing in some ways and we had cleared our schedules, lined up baby sitting etc. NOW we have no clue when Katya might have surgery, so we are left in a strange limbo.

It's not exactly a pleasant place to be, but I'm confident GOD is watching over us and has this.

Thank you for praying for our family . . . .

Wednesday, October 2, 2013

A 180 Degree Spin Part 1

Monday after we woke up and ate breakfast, we headed off to the Wilmer Eye Institute  for a follow up exam on Katya's eyes.

This of course seems to involve much waiting. And more waiting.

But finally we were called back. The absolutely amazing and awesome Mr Alex was there again to examine Katya's vision. She clearly remembered him, and was quite comfortable and cooperative for every thing except giving him back his fancy light right at the end! She thought she should be allowed to keep that for a bit, but finally did surrender it in exchange for the usual lollipop!

He was able to use the typical wall chart of letters this time to test Katya's vision. He had Charity sit on the floor with her back to the chart and then tell him exactly what Katya was signing. According to this exam, Katya's vision had deteriorated somewhat in each eye since April. However, he said that it is possible she just got a "more accurate exam" than last time. The deterioration (if it is indeed that) was not significant enough to warrant glasses "yet" but just to make sure that there was nothing untoward going on with her optic nerves they decided to dilate Katya's eyes.

Alex worked all his magic again, and Katya did great. She makes funny faces when he puts the drops in, but she does NOT cry! So proud of her! And so thankful for Mr Alex's smart tricks . . . because I had seen Katya traumatized too many times before we started going here when people put drops into her eyes. No one in our state that we have encountered has been as smart about putting drops into Katya's eyes as Mr Alex is!

Once her eyes were dilated, it was time to see Dr Repka.

He was not concerned about the change in vision--said it may be a change, or may be due to a more accurate exam. He was extremely pleased again with how well Katya sees, and how well her eyes even manage to work together. He said again how unexpected this is in light of her history.

So we walked out feeling pretty cheerful. Katya was happy she had her shades along to protect her eyes after the dilation. They never offer her sunglasses, so we were thankful to have remembered to take our own.

After a hasty lunch of left-overs we scrounged from the fridges at the Children's House, we headed out to see what we could find to keep Katya occupied. It turned out that her spirits were rather disgruntled and anxious so nothing we thought of seemed like a good plan till Paul hit on the idea of a water taxi ride. Sure enough! She was scared about it, but ended up loving the breeze blowing through her hair as we thought she would.

We went out to Fell's Point and then disembarked to walk around the cobblestone streets for awhile.

The plaque on this interesting building proclaimed it the site of the TV series, "Homicide--Life on the Street". I didn't know anything about it, so I looked it up. Sure enough. Billed by some sites at the "most realistic cop show ever" it sounds like something I might enjoy taking a peek at if I ever had a chance sometime.

When we all got too hot, thirsty and foot-sore to keep on, we ducked into a little shop and each picked a bottle of juice and sat at the counter, swinging our feet as we slowly sipped our drinks. Katya was so thirsty she polished off an ENTIRE bottle of drink! She usually doesn't drink that much unless there is a lot of coaxing and pushing, so we were happy she drank it all!

While we were there we enjoyed the lovely stained glass above the door!

Needing some levity, this sign did the trick for me, setting me off into peals of laughter! Charity thought she better take a photo so we could pass on the fun! ;-)

Love this photo with Katya's hair streaming in the breeze!

My lovely daughter taking a rest outside a shop.

Charity and I found this brass shop very fascinating.

Katya was clearly wearing out, so we decided to head back while things were still relatively peaceful. We had to go to "Whole Foods" anyway to get a couple of items for our supper since the supper being brought in was going to be Pizza with out any dairy free options.
I think Katya enjoyed the ride back more than she had enjoyed the ride out. She signed "YES" when we asked her if she liked riding the boat.

She enjoyed looking at these beautiful flowers after we got off--Charity and I did as well.

There's always something we can find to like or enjoy in Baltimore, no matter how stressed or frustrated we are at needing to be there for medical stuff yet again. I'm so thankful that God blesses us with joy and pleasure even in challenging and dark times. It is a good gift from Him.

--To Be Continued

One of the World's Most Lovely Words

Sunday, after a wonderful service highlighting "Disability Awareness", we rolled out of town and headed north. Met friends of ours, dropped off Chad and Kristina with their school books and duffle bags, and then zagged across the country as fast as we could to Johns Hopkins in Baltimore, MD.

We managed to finally get to the Children's House soon after 9:00 PM. Got checked in, went to our room, and tried to settle down for the night. Katya was really wound up and sleep did not come till very late for her, and she was back awake by 7:00 AM Monday.

However, she was content to snuggle in bed for awhile, and when I glanced over at her I saw Katya working her mouth HARD. She kept moving it with tremendous concentration, and then suddenly . . . suddenly . . . across the air came the sweetest word ever . . . "MAMA" in an Audible WHISPER.

Oh my word. What tears of joy!!!! I may never heard it again, since Katya seems to get a word and then LOSE it again, but I DID hear it. She was so delighted with herself, that she worked her mouth some more and guess what came out next?! "Papa!" (The Russian word for Daddy). She clearly said that a few times, and then the rest of the trip, if we would coax her to say it, it would only come out "Ma" and "Pa".

However, we'll take that. Just never dreamed we'd end up being "Ma and Pa" to anyone, but after all the times I have mentally prayed, "Let me hear her voice!" and prayed and prayed for Katya to learn to speak, hearing that "Mama" as clear as could be, even though in a whisper, was enough to MAKE MY WEEK.

I think it made Katya's too. What do you think when you look at that gorgeous smile she gave me?!

Photo: Look at the joy this morning!