All About Vladik: One Year Free

Two days ago we celebrated one year of freedom for our sweet Vladik.  Our miracle boy spent the day at a Hungarian water park (long story…for another post) discovering his great love for enormous water slides.  He ran and played and splashed, yelling “Mom, look!  Dad, watch me!” He watched his brothers and sisters do things he was nervous to do, then conquered his fears and tried for himself.  He ate ice cream and pizza and laughed and asked “Blue slide again?”  

He truly lived.  


On one hand I can hardly believe a whole year has passed since Vladik came out of Romaniv forever, but mostly it feels like a lifetime ago.  When I go to Romaniv these days I can hardly picture him there.  He is truly a different child.  

It’s interesting because if you ask anyone who visited Romaniv and met Vladik there they would all tell you how happy he was.  He was always laughing and smiling.  ALWAYS.  But now that we truly know him we can see his behavior then for what it really was.  Yes, he was smiling, and yes he laughed a lot, but he was also afraid- ALL THE TIME.  His body showed his fear in the way he held himself; his shoulders scrunched up, his head down, full-on protection mode at every moment. His laugh seemed happy, but now we know that laugh as the nervous, afraid laugh that shows up when he is unsure. If you asked him for a hug he would sort of back up toward you and lean a shoulder in. You could see he was compliant but he didn’t feel comfortable and he didn’t enjoy it.  He was afraid of physical contact and always on guard.  He had a bright countenance that I believe came from the Lord, but it was just a dim flicker compared to how he shines now.  

The boy we knew at Romaniv was a shadow of the boy we know now.  And the boy we know now is amazing.  

Passport photo 2015

Passport photo 2016


He is funny and loves to make his siblings laugh. He comes up to me several times a day with his arms open as wide as possible, asking for a hug. He adores Bluebell, our puppy, and could play with her for hours. He likes ice cream and potatoes and pizza and soup. He’s a daredevil and wants everything faster and higher and louder. His bike is his most prized possession. He and Seth are still thick as thieves and when they get too quiet I know something is up…typical brothers. 😉 He speaks English and Ukrainian and a mish-mash of the two that can only be described as “Vladik speak”. Oh, and he pretty much never stops talking.  Motor.Mouth.

We think Vladik is doing miraculously well.  His transition to our family has been amazingly smooth.  BUT 15 years of institutionalization, 11 of those in a bad place, can not be erased in one year.  We have so many wonderful moments, and we also have so many difficult moments.  Parenting a child who has lived a lifetime of trauma is no joke.  It requires constant reassurance and truckloads of patience (of which I am guilty of running short).  Just when you think you’ve conquered a certain behavior or fear something triggers and you go ’round the mountain again…and again.  

Put your arms down. No beeping. We’re going home soon. Put your arms down.  No beeping. If you want to talk to someone just say “hi”, you don’t need to make strange noises to get attention. No beeping. Put your arms down. And on and on…

It’s no secret that extra struggles come with the fact that we are back in Ukraine.  Most every other internationally adopted child I know leaves their institutional life and it is over and gone for good; new life, new memories, old life gone forever.  That will never be Vladik’s reality.  Romaniv has stayed and will stay a part of his life.  It is our life.  As much as we would love for him to, he doesn’t ever get to fully forget. We will never ever take him to Romaniv again, and we tell him that all the time, but he knows we go there and he hears us talk of it daily. Some people might think it’s cruel of us to bring him back here where he is constantly reminded of his past.  We know that.  We know, and our only response is “God said so.”  Just like our other children have an unusual life because of what God has called our family to, so it is with Vladik.  And just like we trust that God is caring for our other children and giving them what they need, so it is with Vladik.  When we chose to say yes to adopting Vladik we knew this would be his reality and still we knew that we knew God was saying to make him our son.  So we did.  

Annnnnd God is making a way for our boy, even here in Ukraine.  He is surrounded by our team who knew him when he was an orphan and know him now.  In their eyes he is a celebrity.  He is what we dream of for all of our boys, in the flesh.  His presence in our church here in Ukraine brings hope and refreshment to those who work tirelessly on behalf of the ones Vladik left behind.  He brings joy wherever he goes.  🙂 


A local private school welcomed all our kids with open arms, including Vladik.  He gets to do PE, music, and art with the fifth grade, while having individual lessons the rest of the day.  I get to make his lesson plans and our dear friend has agreed to teach him.  She loves Vladik and sees him for the beautiful soul that he is.  Their lessons start next month and I can’t wait to see how he thrives.  So far the kids at the school have been kind and accepting of Vladik.  We are thankful. 

He gets to attend a weekly class at Mission to Ukraine where he will be treasured and valued.  Full circle. 


The other day we were visiting a beautiful basilica in Budapest.  We decided to pay the fee and go see the inside of the building. We approached the cashier and when he saw Vladik he smiled so warmly.  He almost pushed us into the church, “You don’t pay!  Please, please go for free” he exclaimed with a kind pat on Vladik’s back, and a look of tenderness in his eyes. I could see there was no pity there, only love. Oh man, the tears were flowing.  That man, he saw the beauty of our boy.  There was no look of disgust, no disdain, no mouth-hanging-open staring.  There was love.  For me that moment was a gift from God.  It felt like God was whispering over us “See, I see your boy, and I’m watching over him.” 

Vladik’s healing is a long road, but he is definitely well on his way.  He is absolutely flourishing and growing and LIVING.  We will never ever be the same because he is our son.  He is our gift and I pray we never take him for granted. 

The Beauty and the Grief of Older Child Adoption

Vladik will turn 16 next month. It will be the celebration of the century, because our baby finally has a family. I can’t wait to celebrate the life of our boy. He is a warrior. He is a survivor. I can’t wait to shower him with love and attention. I can’t wait to show him with song and cake and presents and word and hugs that he is special; he is loved; he is wanted.  

After 15 years of nothingness, he was CHOSEN. 

Older child adoption is a tough thing.  It is a scary thing.  It is not something to go into without much prayer and consideration, just like with any adoption.  Every adoption has the scary unknowns.  Adoption is a leap of faith and there is no “easy” adoption.  Adoption is just hard.  Beautiful and hard.  🙂 But it’s different with older child adoption, isn’t it?  You can’t erase the cold hard facts that are years and so.much.time gone by. It makes a difference.

Vladik had 15 years of life without us.  He has 15 years worth of memories and trauma and pain and stress and fears, and we weren’t there.  We weren’t there to comfort him.  He was in a very unsafe, very traumatic, very scary place and there was no mommy and daddy to fight for him.  It kills me to think of it. 

Our friends at Mission to Ukraine (MTU) and Bible Orphan Ministry (BOM) have told us about what Romaniv was like when they first visited: MTU 8 years ago and BOM 10, maybe 12 years ago.  Before BOM first visited there had been no outsiders ever, that we know of.  The boys were like wild animals, the conditions appalling and disgusting, the staff overworked and hopeless.  Romaniv looks amazing these days, compared to what was, and even today it is a place that turns sweet little boys into lifeless shells.  It is a bad place today.  No child should have to spend one night there.  It was even worse before.  

And my Vladik was there.  Sent to Romaniv as a tiny, chubby-cheeked four year old, he was there before there was hope. 

I got this picture in my inbox this morning from Bible Orphan Ministry.  It’s from a time soon after Vladik’s transfer.  Oh my baby.  If only we had known you.  If only we could have gotten to you sooner…

What grief.  All that time lost.  All that time, as his view of the world was being shaped, he was living in hell.  

The grief of older child adoption can not be ignored.  They have simply waited so long, and because of that, the healing is slow and tedious, and sort of like an onion.  So many layers of pain and fear need to be peeled away- and they don’t come off easily.  So many unhealthy learned behaviors.  Survival of the fittest.  In constant fight or flight- for 15 years.

I needed to see that picture today.  I needed to be reminded of where Vladik came from because I can easily forget.  The longer he is with us, the more I forget all the years before.  

Lately he seems to have taken some steps back in his healing.  We’ve seen more guarding, more anxiety, more institutional behaviors, less receptiveness to physical affection, more tears. Somehow I guess I thought we had won those battles.  We were already over those mountains, and I found myself becoming impatient, not wanting to climb them again.  I was growing annoyed with the institutional behaviors.  I was impatient with the tears.  I was less nurturing and more “buck up bucko”. 😉 

Then that picture popped up.  How could I have forgotten????  I mean Romaniv is always on my mind.  I never forget Romaniv. My babies are there, they are always in my heart, in my thoughts, on my brain.  But how could I have forgotten about all those years…all those minutes, all those moments that Vladik endured in that place?  FIFTEEN YEARS.  Fifteen years can not be undone in 9 months.  Sure, progress can be made, but we’re talking reprogramming EVERYTHING.  We are talking about starting at square one and learning anew EVERYTHING. 

And in that relearning comes the beauty of older child adoption.  

Redemption.  

We get the honor and privilege of showing Vladik with our actions and with our words that things don’t have to be the way they were. 

When you are hurt you can cry, you don’t need to laugh, because mommy will come to you.

When you are unsure in a new situation, you don’t need to hold your ears and make loud noises to fill the space, because mommy and daddy are here and we will guide you.  

When you have free time and you aren’t sure what you should do next, you don’t need to bang the walls or pace or rock because your brother will play basketball with you.  Your sister will cuddle you and watch your favorite cartoon.  Your daddy will take you on a motorcycle ride.  🙂 

When you worry about having enough food or if your body is safe or about your feet that are so different, don’t.  We will always feed you.  Your body will be safe even without long sleeves.  You will always have socks to cover your feet.

Look what God says! 

“…Behold, I am making all things new.”Revelation 21:5
“He heals the broken-hearted and binds up their wounds.” Psalm 147:3

God loves our kids so much, and He is all about redemption.

In an older child adoption we get to start over.  We get to watch the redemption and we get to see our child grow from a frail, cowering little boy into a strong, outgoing teenager with a smile that lights up our world and a basketball shot that amazes us all.  If you would have told me 10 years ago that God would give us a 15 year old son from a rural mental institution and he would be one of our greatest surprises, greatest treasures ever….I’m not sure I would have believed you!  We are so thankful that God knows best. 

If you are considering older child adoption, please don’t shy away.  The battle is uphill, but the view at the top is beautiful. No child is beyond hope.  No child is too far gone.  After all, an older child is still just a child, and every child deserves to have a family.   


These two older children are boys that I know and love with all my heart.  They live where Vladik used to live.  They are precious, and deserving, and they have waited too long.  Would you please consider adding one of them to your family and being a part of their redemption story?  Email me if you have any questions about them.  PS: They are each eligible for a $10,000 adoption grant through Reece’s Rainbow!   

All About Vladik: Seven Months Free

I wish every single person who ever met Vladik at Romaniv could see him now.  You would not know this child.  

Jed is back in Ukraine right now and has been sending me tons of pics of my babies there.  When I see those pictures and then stop and think about Vladik living there I almost can’t even imagine it.  The boy I know now is so much different than the boy I knew there.  He’s a new creation. 

I’ve said it before and I’ll say it again: Vladik is a miracle.  How could a child raised there be this joyful, this full of life, this loving, this generous?  Only God could do something like that. 

General Transition: He’s a rockstar. Vladik is growing in his development in leaps and bounds.  His language is growing as well, both Ukrainian and English.  He’ll often ask us what certain words are in English, and if we tell him once he usually remembers.  So, now Vladik speaks a mixture of Russian, Ukrainian, English, and “Vladik speak”.  Everyone in our family understands about 99% of what he says, but it’s another story with the rest of the world.  Slowly and surely he is becoming more understandable.  He desires to communicate and his social skills have vastly improved, so we are not worried. 

  
Vladik came to us with many institutional behaviors.  He didn’t know how to behave in most any environment and had a lot of nervous twitches- like sticking his tongue in and out really quickly, licking his hands, and putting his elbows up to his ears, almost like he was blocking his ears.  He would also make tons of inappropriately loud sounds at inappropriate times.  Like if there was quiet he just had to fill it!  If we were in a store or the library and it was quiet you could guarantee Vladik would start filling up the space “BEEP BEEEEEEP!  BEEP BEEEEEEP!”  Oy. We’ve come a long way baby. Now if he beeps we just remind him that he’s not a car and he instantly stops.  🙂 He is sensitive to environments and if all is quiet he is usually good about being quiet.  The only real nervous behavior he still holds on to is the elbows up at the ears, but that one is more and more rare.  He usually only does that if he knows he’s done something wrong, or if someone else is in trouble.  It’s wonderful to take a moment to think back at how far he’s come. Praise God! 

Family: We’ve hit a point where it feels like he’s just always been here.  I no longer have that feeling like I’m the babysitter of a child who just always stays (that is a normal feeling in adoption, FYI). He is our son and it feels natural.  I couldn’t have said that even one month ago.  He still loves his Seth and I think when he had his surgery it bonded him more to the other kids as well.  They were all so concerned for him and that empathy really helped with relationship building.  He really is just one of the gang.  I’m so thankful for that. 

   
   
School: Vladik started school a few weeks ago and is doing amazingly well!  In January he started seeing a tutor for a half hour a day while the school district found a classroom placement for him.  Then in the last week of March he became a freshman at South Salem High.  Ha!  He’s in a self-contained classroom and we are so blessed by teachers and assistants that love him and treasure him.  Vladik LOVES school.  We started him going half a day at first, but now he is going full day.  Most of the fun, more active learning happens in the afternoon, so we knew he would really enjoy that.  Like every day his class gathers the recycling from all the classrooms and they sort and shred.  Vladik is kinda obsessed with the shredder. 🙂 Today he goes on his first field trip to a recycling center!  He could hardly sleep last night he was so excited to ride the school bus. I am so happy for him that he has this opportunity.  Sweet boy deserves every bit of joy and life that we can offer him. 

  
Medical: Vladik had sleep apnea, so we had his tonsils and adenoids taken out on March 30th.  He also had the back of his throat expanded to make his airway larger.  He did great and has fully recovered.  We had a few scary hours in the recovery room after learning that his body is extremely sensitive to narcotics, but we learned our lesson on that one!  I’m excited to repeat the sleep study, but I can already tell you that the surgery made a big difference.  You know how when you have a newborn and they’re sleeping so still and silently that you have to go super close to make sure they’re still breathing?  Yeah, I had to do that the other night with Vladik.  🙂 I’m used to being able to hear Vladik sleeping from every other room in the house, but that’s not the case now!  He sleeps absolutely SILENTLY.  I’m so so so happy for him!!!!!!  His body used to have to work so stinkin’ hard just to get air.  He had to sleep with his head back and his back arched just to keep his airway open.  The ENT told us that Vladik probably had many very dangerous nights as a small child because his airways were so small.  Thank you God for protecting our baby!  Now I pray that he will start to gain weight since he won’t be working so hard just to sleep. 
The next surgery for Vladik is on his right hand.  A plastic surgeon will be giving him a thumb sometime in May.  WOOHOO!  That is the surgery Vladik is so excited about.  We were hoping to do surgery on his feet first, but we won’t be able to.  The foot surgeon will be out of the country for the months of May and June and we will simply run out of time.  We need to be back in Ukraine as a family in August, so we have to let the feet go for now.  Most likely Vladik and I will return for that surgery sometime at the beginning of next year.  So now we just eagerly await insurance approval so we can schedule hand surgery!  

  
Otherwise, I guess I can just say that Vladik is our joy and we love him more every day.  A couple months ago we started teaching him how to hug.  Vladik is very protective of his body and would barely receive a hug.  He would kind of back his shoulder in to you and that was as good as it got.  He would often come and kiss my shoulder, but he was embarrassed or nervous to hug.  We taught him that you give friends high fives, but with family you need to wrap your arms around them and that is a hug. Now if I say “I need love” (in Ukrainian) he will wrap his arms around me and hug me tight.  And yesterday, for the first time, he initiated.  I was in the kitchen and he came in and said “LOVE!!!” And gave me the hugest hug! Melt.my.heart.

He’s just awesome and we are so thankful that we get to have him in our lives.  Precious, precious boy. 

   
 

The Sky’s the Limit

Since the beginning of December we’ve been taking steps toward putting Vladik in school for the rest of this school year, while we’re in the US.  It’s been a decision I didn’t expect us to make, but for many reasons it just seems right.  We aren’t set on him being in a special Ed classroom all day every day, we just feel that it makes sense to take advantage of the opportunities he has here in the US to be taught by professionals- before we head back to Ukraine and it’s all up to me. [GULP]
On Monday we spent about 2 hours with a school psychologist and a speech pathologist and they evaluated Vladik.  They had never seen a situation like ours before: 15 years old, no educational history AT ALL, smart, but behind in everything because he’d simply never had a chance.  ZERO life experiences until 5 months ago.  Born at age 15. 🙂

Vladik blew them away.  His zest for life, his joy, his eagerness to learn- he is truly a miracle.  

There may have been some tears in the room as we talked about how far Vladik has come-  from the cowering boy in the Isolation Hall to the brave boy shooting matchbox cars across the meeting room table.  

Those two ladies got it.  They really and truly “got” it.  They saw the treasure in Vladik.  They saw the untapped potential that has waited years and years and years to be discovered.  They looked past his outward appearance and his awkward speech and institutional behaviors and truly saw the person.  Those two women saw the value in my son and I will be forever grateful to them for that.  At the end of the meeting they declared “We need to get this boy in a classroom! He’s waited long enough.”  

And boy did they live up to their word, because today Vladik started school. 
  

It will take a while to figure out which school and which classroom is the best fit for our boy, but they didn’t want him to have to wait, so they arranged for Vladik to start with tutoring in the meantime.  I think that was a fantastic idea.  Tutoring is the perfect transition for Vladik.  

We started today and are just doing 30 minutes per day, 5 days a week.  Vladik’s attention span is like minuscule, so 30 minutes is about his max.  Plus, this is his first activity away from Mama and Papa, so it’s a great way for him to learn that we will always come back for him and it’s a really safe place for him to learn some independence.  The teacher speaks no Ukrainian 🙂 so, Vladik will be learning some English along the way!  

Oh my, I made the rookie mistake of telling Vladik last night that he would start school today.  Silly me.  I should have known that in order to avoid approximately 372 questions about when we will go to school, I should have just waited and told him in the car on the way there. [live and learn]   But I just couldn’t wait to tell him!  He was jumping and laughing and clapping with glee.  He said “Addy has a school, Ezra has a school, Hava and Seth have a school, and Vladik has a school!!”  When I came to pick him up today at the end of his lesson he said “Mama!  This is my school!”  He was so proud.

I love that boy.  I picture him wandering the halls of Romaniv and my heart breaks in two.  He had so much more in him than we ever realized.  He had an imagination and a smart brain and a sense of humor and a great capacity to love, all just sitting and waiting for a chance.  Born at age 15, now my sweet baby can fly.  The sky is the limit for our boy. 

March 2015 and February 2016

I dream of that same future for the rest of our babies that sit and wait at Romaniv.  I wonder what they will be on that day when their chance at freedom finally comes.  I wonder who will be funny and who will be super smart and who will have a knack for growing flowers and who will be great with the animals.  I do know that they will all exceed our expectations, because the sky will be their limit.  And I pray that day comes soon.  

Jed is working hard in Ukraine, deciding on the best property to purchase and meeting with government officials.  This God dream of ours, it’s going to happen.  It’s really going to happen.  Doors are flying open in front of us.  People are going to see the beauty of our boys and they’re going to see their value, just like the school psychologist and speech pathologist recognized the beauty of our Vladik.  The joy of Vladik experiencing his first day of school is just a glimpse of the freedom that is to come.  We.Can’t.Wait.  When God puts a dream in motion the sky’s the limit!


  

All About Vladik: Four Months Free

I think it’s about time for an update on Vladik, don’t you?  I know many of you love him very much, and have prayed for him for many years.  It is our joy to share his journey with you.  Some things I won’t share, just to protect Vladik’s privacy, but there is a lot I will share, because Vladik’s story is a great story of redemption and we just can’t keep it to ourselves!

General Transition: Vladik is doing unbelievably well.  He is a walking miracle in every way.  He sucks the marrow out of life more than anyone I’ve ever known.  He is also still the happiest person I’ve ever known.  He almost NEVER stops smiling!  And if he does stop smiling, or if he starts to cry, you know you better pay attention.  His cry is the most pitiful thing!  Maybe it’s because it’s so rare to see him unhappy, but when he starts to cry we can’t even handle it.  So so sad!!  He generally only cries when he is in pain (shots, blood draws, IV’s…) or when he is overwhelmed.  Like yesterday, at the end of a loooooong day of doctor’s appointments, we were sitting, waiting for the nurse to come back in the room and he just leaned into me and started crying.  It was so unexpected, and so sad!  He just really wanted to go home.

Vladik loves home.  He always wants to know which direction is home and when are we going home.  He calls our house “The Red Tomato” in Ukrainian, because it’s red. 🙂  He’s always gotta check in about where The Red Tomato is, and if that’s where we’re going next.  I love that he loves home, and I also know he always checks in about it because he’s still not quite sure that he will always be with us.  That’s okay buddy, keep on checking in as long as you need to. You’re stuck with us!

We still speak only Ukrainian to Vladik and have not really taught him any English yet.  But, we just decided this week to begin speaking to Vladik in English and Ukrainian.  We don’t want him to be on the fringes of our family in any way, and not having English excludes him from many conversations unless one of us translates.  It’s time.  This should be fun!  Ha!
  

Family: Seth and Vladik are still best buds.  Vladik calls Seth “Seppa” and Seth calls Vladik “Vladchik”.  They play together, fight together, laugh together and cry together (well, Seth does the crying…haha).  They are always hugging each other.  It is the cutest thing.  Seth is the leader, for sure, and can kind of take advantage of it, but Vladik is learning to stand his ground a bit better too.  He actually knows how to push Seth’s buttons, so yeah, typical brother stuff going on there. 🙂  Havalah is doing great with Vladik.  They don’t play together much, since Vladik doesn’t share a common love for Barbies, but Hava is always coming up to Vladik and giving him little loves.  She really loves him.  

Ez and Addy have had a bit of a harder transition, which was to be expected.  It’s difficult to know how to navigate having a new brother that is physically your same size, but developmentally like a toddler.  There are some habits that a toddler might display that are cute,  but when done by a toddler in a 10 year old body…not so cute, more just annoying…and LOUD.  Ha!  We have all had to remember often that Vladik has never been parented at all.  He has never had a family to teach him what is appropriate.  He has never had good social modeling.  He has never had any healthy relationship modeling.  He likes attention and will try to get it however he can- negative or positive- he’ll take what he can get, much to Addy and Ezra’s chagrin.  BUT, I will say that they have many sweet moments and over the past few weeks the positive moments have far outweighed the annoying, make-him-be-quiet-and-stop-touching-me-moments.  Yay!  Vladik is learning better how to relate to his siblings, and his siblings are growing in their love for him.  When you love someone you can accept a lot of behaviors that would have made you crazy before.  We talk a lot about choosing love, even when you don’t necessarily feel it at the time. Also, Vladik’s sense of humor is coming out more and more and he is making us laugh more all the time!  That helps those sibling relationships for sure. 

Slowly but surely, he is becoming just one of the bunch.  They have all come so far! 

Vladik does great with mommy and daddy. He loves us both and seems to be attaching appropriately.  He doesn’t play us against each other like he used to when he was stressed.  He listens and obeys eagerly, 90% of the time.  Usually the other 10% of the time he needs only a firm voice and a reminder that it’s important to listen and obey.  We have done a couple “time-outs” and that has been super effective.  It’s really only “Okay, you didn’t listen so now you have to sit in this chair for 3 minutes.”  But, it is enough to get him to stop and pay attention.  He generally desires to obey.  When he is stressed we have to be a bit more firm with him to draw those boundaries in nice and tight, and he responds really well.

  

Medical: Oh my, have we been busy in this department!  Vladik came to us as a big mystery puzzle and we are slowly fitting all the pieces together.  Vladik is miraculously healthy.  Praise God!  Let’s start with the head and move down.

Head: We just had an appointment this week with the craniofacial surgeon and the neurosurgeon to discuss the results of Vladik’s head CT.  Boy was I surprised to hear their thoughts!  They both agreed that Vladik does not need any skull surgery.  What????  I was all prepared to hear a plan and instead heard, “He’s dismissed from our service!”  

I guess I’m not yet sure if we should be relieved or if we should seek a second opinion.  I have an email into an expert on Apert Syndrome and am waiting to hear his thoughts.  Right now we are choosing to trust the doctors and be thankful. 🙂  This is their rationale: the CT showed that all of his cranial sutures are already closed.  Because he is 15, his head is done growing and his brain is done growing.  His dilated eye exam showed there is no pressure on his optic nerves, and he does not show any signs or symptoms of intercranial pressure.  Because of this, there is no need to expand his skull.  They said that if he doesn’t have intercranial pressure now, there is no reason for him to develop it later, because his head is done growing.  It all makes great sense.  I guess we just really want to make sure we get this one right, which is why we are considering a second opionion.  Prayer for wisdom about that would be appreciated!  

We are unsure how much of Vladik’s delay in development is because of restricted brain growth in his earlier years.  If he had been born here he would have had skull expansion surgery as an infant.  The doctor said that unfortunately, because he was not treated, that damage is already done and now it is too late for treatment.  So, we are glad we don’t have to deal with a skull surgery, but we also mourn a bit for what might have been if we had gotten to him earlier. 

Eyes:  Vladik’s eyes have many of the typical traits of Apert Syndrome.  They are placed in a different position on his head and even the eyeballs are rotated out a bit.  He has good vision and does not need glasses…yay!  But he does not use his eyes together and they are often crossed.  He will have eye surgery this spring to adjust the muscle position a bit and help him to use his eyes together.  

Teeth: Vladik’s teeth are actually not in horrible shape!  Sure they are funky, and he could really use some braces, but health-wise, they are not bad at all!  He had two old fillings with decay underneath that we have had replaced and he got two crowns.  He did amazing.  We won’t be able to tackle orthodontics until we get to Ukraine. It’s too long of a process for us to undertake here in the US.  Because of that, we can’t really do any mid-face surgeries, as those must be coupled with orthodontics.  Midface surgery, in Vladik’s case, is not a medical necessity.  It would be more cosmetic, I guess, and honestly for a child with Apert Syndrome, Vladik’s midface is actually not in a bad position!  It doesn’t seem to affect his airways at all.  Because of that, we have opted out of those surgeries.  It just isn’t possible, with our living situation, to couple anything with orthodontics.  
  

Ear, nose, throat:  We have yet to see the ENT doctor (grrrr), but we have been pushed up in the priority list as of yesterday.  Vladik had a sleep study and it showed he has obstructive sleep apnea.  He snores and gags and chokes and coughs all night long.  The craniofacial team is recommending a modified tonsillectomy (can’t do a full because of his cleft palate).  Hopefully taking part of the tonsils would help his apnea enough for him not to need cpap.  All the other surgeons agree that if a tonsillectomy is going to happen, then that needs to happen before any other surgeries.  Simply because airway management during anesthesia will be much easier if his airway is more clear. So, we are looking forward to that appointment. The ENT will also order hearing testing, as recommended by the cranio docs.  Vladik’s speech is still pretty hard to understand and they want to rule out hearing loss.  

Hands: Can you believe the physical issue that has caused the most angst so far has been fingernails????  OMG.  Vladik’s fingernails are so difficult to manage!! They are fused, like his fingers, and just a pain.  We have been dealing with an ingrown fingernail since November that eventually led us to the ER because everyone is afraid to touch him. We FINALLY saw a hand surgeon yesterday (as a follow-up for the nail) and he was awesome!  He would like to give Vladik a thumb!!  He is suggesting starting with a thumb and seeing how well Vladik can learn to used it before trying for anything more.  Because of his age, it looks like from the xrays that it would be very difficult to separate the other fingers, plus, we then run the risk of him not gaining great use of them because of his age and the lateness of a surgery like this.  We agree.  Having thumbs will absolutely change his life.  We told him last night that the doctor wants to give him a thumb and he was flipping out!!  He was pounding the table and shrieking and laughing.  Ha!  It will be amazing. The doctor suggested just doing one hand at a time, so as to not incapacitate him, but honestly, he needs both hands to do everything anyway, so we are going to ask for both thumbs to happen at once.  We’ll see!

We already have been waiting for months for an appointment with the hand surgeon at Shriners and our appointment is finally coming up at the end of the month.  We’ll go and see what that surgeon has to say and then make our decision. It’s so exciting to hear that Vladik could have thumbs.  That is what we hoped for.  SO SO EXCITING!!!

Feet:  We saw a foot surgeon at Shriners in November and he saw right away that Vladik would greatly benefit from surgery on his feet. Vladik’s feet are so funky.  They are almost impossible to fit for shoes and they always look so painful.  They are very misshapen and there are sores on the bottom of his feet where all the pressure lies.  The doctor wants to basically reconstruct his feet- lengthening some bones and shortening some others. This will help him so much as he grows and (hopefully) gains some weight.  The downside is that the surgery will land him in a wheelchair for 8 weeks.  OUCH. Trying not to think about that one too hard.  Wheelchairs are very traumatizing for Vladik.  I can’t imagine how he will react to not being able to walk.  I’ll let you know when that surgery comes up so you can be praying! 

 
Vladik talks often about his old life.  He is faithful to tell us daily he doesn’t want to go back to his old house.  Just in case we should forget!  🙂  He talks about sad things that happen there and whenever he talks about it he uses the word for “thunder” in Ukrainian. He talks about how there was a lot of thunder there and covers his ears.  These days it’s hard for us to even imagine Vladik there.  I feel like the Vladik I knew at Romaniv was a scared shadow of the Vladik I know now.  He was always scared, always in fight or flight mode, pinging from one thing to another.  He even stands differently now.  Before, he was hunched over like a cowering little boy.  Now he walks straight and tall.  

He has a wonderful sense of humor and loves to make us laugh.  He is loving and kind.  He teases his sisters and is obsessed with microwaves.  He loves all things Lightening McQueen, and calls any kind of case with a handle a “businessman”.  He likes cheese and apple juice and Reeces Peanut Butter Cups.  If he doesn’t have borscht every few days he’ll let me know it’s time. He likes to do laundry and even cleans out the vent and adds a dryer sheet before starting the dryer!  He is such a special, quirky little character.  To know him is to love him.

The more we meet with doctors and tell his story, the more I am in awe of God’s protection over Vladik’s life.  That he survived living where he lived, without any surgical interventions, is unbelievable. He is so smart. He is so independent.  Everyone who meets him falls in love almost instantly.  I’m actually crying as I type this.  How did we get to be the ones to win this lottery?  I can’t even wait to see how he continues to grow and change as he gains confidence in the fact that he is loved and he will never ever go back to his old life.

Thank you Jesus for our sweet boy!