the kiddos | Wide Awake Family

Tuesday

Posted on October 17, 2016 by kimnjed

1. THANK YOU all for praying for the situation with our new little guy at the institution. Please keep praying for his health, as well as for the impact of that night. The impact is far-reaching, relationally, politically, and spiritually. I know I sound vague, but I gotta be. (Any former youth groupers remember the “unspoken” prayer request? Ha!) Just keep praying, pretty please. Thanks 🙂

2. School is going great for the kids! We have gone from daily tears to smiles and declarations that “This was the best day!”. Of course if you ask, Addy and Ezra will tell you that school is “so boring”. But, they are making friends and feeling comfortable and understanding more each day. Our friend, Romana, comes each day at 4:30 to help them with their homework and she is saving our lives, one story problem at a time. I really do like our school and I am so thankful that God has given our kids a safe place to land and grow.

On the bus, headed to school

3. Jed and Vladik return today! FINALLY FINALLY FINALLY! I didn’t mention it here, but we had a bit of an immigration fiasco last month. We are applying for permanent residency and we were missing one apostille. We didn’t know it, and Jed had to leave the country. You can only be in Ukraine for 90 days out of 180 days without a visa or residency, and he met his limit. So, in the dead of night we made a run for the border. Think Sound of Music, but much less romantic. Think tears and a trashed house and frantic calls to friends to take Bluebell at the last second. We spent a few days in Budapest as a family, and then I returned home with four of the kids, while Jed and Vladik couch-surfed throughout Europe, waiting till Jed could get on the other side of his 180 days. Finally, today, after 33 days and 10 countries, Jed and Vladik are coming home! Many thanks to our gracious friends all over the continent who have cared for my boys so well. What would we do without you all?

Hungary

France

The border of Germany and Austria

4. We are hiring a friend to teach Vladik individual lessons at school. I’m so excited and hopeful for him! Starting next Monday he will go to school with the other kids in the morning, and his teacher will accompany him. He will do music, PE, and art with Addy’s class (fifth grade), and then his teacher will give him his own lessons for the rest of the time. Vladik will attend school half day, 4 days a week. I’m working on making the lesson plans and it’s quite the job, but necessary. Vladik wants to learn, he wants to go to school like the other kids- and he should! I think he’s going to love it. I’ll keep you posted!

5. Today we re-submit our residency documents. Hopefully all is in order…otherwise the 4 kids and I will meet our 90 day limit. Yeah, let’s not think about that. Everything will be fine. Everything will be just fine. No need to worry….ahem. Yikes.

Photos for residency: no smiles allowed!

6. Guess who saved my life this past month? GRAMMY!!!! When Jed’s parents found out that I would be without Jed again, and this time here in Ukraine, Grammy hopped on a plane and rescued me. Seriously, if Grammy hadn’t come my kids would be running with the wild dogs in the street. Things were at critical mass around here. She has cooked every meal and washed every dish since her arrival. I bow at her feet. 🙂

7. For all the Bluebell-lovers out there, I’m happy to report that Bluebell is doing just fine. She is happy and obedient and just a joy to our whole family. She was a bit bored so we found her some new chewies at the grocery store. Cow hoof, anyone?

Welp, Jed and Vladik are on their way home from the airport, so I better go. Thanks all, for loving us and praying for us. This has been a bit of a tough season, but we know that God’s plans are in motion and our trust is in Him!

The Big School Question

Posted on August 24, 2016 by kimnjed

It’s that time of year again! School is on the brain. School uniforms can be seen in every shop, little tents can be seen on the sidewalks selling school supplies at a discount. Here we goooooooo!

School is about to start and the Johnson family has (yet again) the big question looming over our heads: “What will we do about school???” I gotta tell you, I’m am SO OVER asking that question. I’m over it! I have to admit to being a bit jealous of everyone who stays in one place and without much thought or debate knows exactly where their children will go to school each year. I’ll admit to being a bit jealous of everyone who knows what to expect and what supplies to buy how to communicate with the teachers and what is expected of them and their children. But, pity party over. I realize that we will never be those people. Time to suck it up and move on. 🙂

Uniform shopping!

There are several variables that make schooling a big challenge here. First of all, we seem to be the only foreigners with kids around here. If there are others they must be hiding because no one knows about them and no one has ever seen them. Because our kids are, seemingly, the only foreigners and are not fluent in Ukrainian the schools have no idea what to do with them. ESL type programs are nonexistent here, because everyone is from here! I know that kids learn quickly, and will eventually catch up, but it’s not like Addy can just enter 6th grade here and on day 1 write an essay in Ukrainain. There’s just no way! Addy and Ez will absolutely need help and assignment modification, but if schools have never done that or considered that before, then their answer is usually just to put the kids in first grade over and over so that they don’t fail. Hava will be fine because she’ll do first grade, and Seth will be fine in preschool/kinder, but we are pretty adamant this time around that the schools find some way for Addy and Ez to be with their peers.

There are four schooling options available to us:

1. Local Public School. PROS: Free, great opportunity for social integration, taught 100% in Ukrainian, opportunity to go to school with neighbors. CONS: Big class sizes, no ability to modify assignments for our kids, our kids would go to the village school which does not have a good reputation, a public school would not accept Vladik.

We sent Addy and Ezra to our neighborhood public school for a semester in 2014. It was a fine experience. They both did first grade and all went fine. It wasn’t amazing, but it was okay. I would be very hesitant to send them to public school in the upper grades. They are just not equipped to work with us.

2. Local Christian School. PROS: Great opportunity for social integration, taught 100% in Ukrainian, opportunity to get to know other Christian families, smaller class sizes. CONS: No desire to modify assignments for our kids, unsure if they would accept Vladik, they have a waiting list right now, so most likely we wouldn’t get in anyway.

We sent Addy and Ezra to this school for a semester in 2014 and it was just okay. They wanted them to continue to repeat first grade until they were fluent in Ukrainian…so yeah, probably that’s not the best option for us. NO WAY are we making them repeat first grade again. NOPE.

3. Home School. PROS: We know how to do it. 🙂 No language barrier or cultural barriers, they will not fall behind in study content and English reading and writing, more time together as a family, more time to be involved in ministry as a family. CONS: Social isolation (NO ONE homeschools here), far less exposure to Ukrainian language.

My heart longs for this option. I love homeschooling my kids and and I believe in homeschooling 100%. It is cozy and wonderful and would be BY FAR the easiest option for us. But, we know that we know that is not the option God has for us. If we call Ukraine our home, then we must give our children opportunities to be a part of Ukraine. They will be absolutely isolated if we homeschool, and in a very closed culture we must provide them with opportunities to be with other children and develop language skills. We are already the oddity everywhere we go. We can’t just keep our kids at home. We just know we can’t.

3. Local Ukrainian Private School. PROS: Great opportunity for social integration, taught 100% in Ukrainian, smaller class sizes, a desire to integrate our kids and modify assignments for them, open to Vladik. CONS: We don’t really know anyone there so it’s starting all over.

This is the obvious choice for us at this point. 🙂

We met with the director of the private school this last week and the meeting was super positive. She was full of energy, and right away it was obvious that the director and the teachers were excited to have our kids. It was like they were excited to accept the challenge, which is a huge blessing to us. We don’t want to feel like our kids are a burden to the school. They are open to putting Addy and Ezra with their peers which is a HUGE blessing to us! Maybe the most miraculous moment in the meeting was their reaction to Vladik. There was not one moment when they debated if they would accept Vladik into the school. They looked at him and were like “Okay, now let’s decide where we should place Vladik.” Not “if”, but “where”. Miraculous. We were almost positive that by bringing Vladik back to Ukraine that we were basically deciding he would never get more education at a school, because Special Ed does not exist here. What a big surprise and blessing that they are willing to take him, and WANT to take him. YAY!!!

At this point it looks like Addy will be in 5th class, Ezra will be in 4th class, Hava will be in 1st class, Seth will be in kindergarten, and Vladik…we’re still up in the air about him. He will need a one-on-one who will help him in the classroom, and then take him out part of the time for individual instruction. The school needs to find and hire a teacher for him, and then they will need to figure out which classroom is the best fit for him. If you could pray that they find the best person for him that would be great! It needs to be someone who will treasure Vladik and love him for who he is, yet not be afraid to push him to meet his full potential.

They are basically having us fill out a form that says Addy and Ezra have special needs, as well as Vladik. This will enable the school to legally modify their assignments and give them their grades based on modified work. We explained to the staff that our desire for our kids is language acquisition and social integration. We don’t really care about their grades. Seriously, grades are the least of our worries! It is a battle to get educators here to realize that for Addy and Ezra this is not a problem of intellect, but completely a problem of language. They are smart! They do amazing at school! They just don’t have the level of Ukrainian they need to be able to function like the other students. They don’t need to be in second grade at 10 and 12 years of age, they need to be with their peers where they are socially motivated to reach their potential.

I have no idea how it will all pan out, but at least for now we have a plan and a school that is welcoming us with open arms. The learning curve will be outrageously steep, especially for Addy, Ezra, and Havalah. We’ll also need to figure out how they can get content and practice in English language stuff without burning them out…yikes. I’m super nervous for them, well for all of us, but trusting God that He will give them everything they need.

I’ll keep you posted as we go!

All About Vladik: Seven Months Free

Posted on April 15, 2016 by kimnjed

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

Posted on February 10, 2016 by kimnjed

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

Posted on January 9, 2016 by kimnjed

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!