Update on Our Boys, Part 2

Like I said in the last post, amidst all the talk of war and surviving Russia’s invasion of Ukraine, it’s been quite some time since I’ve given you a good update on each of our boys. If you would like to see more frequent pictures and hear about what our boys are up to on the regular you can always sign up for our newsletter (form at the end of this post) or follow our team’s Instagram. But today I thought it would be fun just to let you know how each of our guys is doing and how you can pray for each of them, specifically.

You can find the first part of the update where I shared about Vlad, Boris, Ruslan, and Anton here.

Sasha, Yaroslav, and Vova are the newest members of the big Wide Awake Family and you probably feel like you know them the least. Back when the other 4 boys joined our fam I was active on social media and shared a lot about them. I really want you to know these three boys well too! They are so fun, precious, deserving, and wonderful. You would just love them if you met them face to face. I know it. They are impossible not to love. If you have any questions about any of our boys you are always welcome to write me! I love to talk about them to anyone and everyone. 🙂

Sasha joined our family in 2021, is now 16 years old, and lives in Side B of the duplex with Anton, Grant, and Lois the cat. Sasha (aka Sashulya) is the baby of the family (well, Sasha and Evie share that role…hehe). He is the youngest of our boys by a mile and is the cuddliest, most precious, sweetest, and squishiest ever. Everyone who meets him falls in love with his smile. When we were considering taking guardianship of Sasha we felt like the Lord told us that Sasha would bring us joy. That has been the truth. He had the easiest transition to family life and just brings us tons of joy with his singing and his wide smile that lights up his whole face. He thinks he’s smaller than he is and will try to climb you like a tree if he wants to be held. But, in fact, we are pretty certain that Sasha is going to turn out to be a giant. He’s growing like a weed and his huge hands and feet show no signs of that slowing down any time soon. He’s so big and just solid!

Sasha’s development is slow and he often seems to be in his own world. He’ll get fixated on a toy or a water bottle (his item of choice) and he’s a goner. But, some new developments are that he will now often turn his head when his name is called and when food is being cooked he’ll make his way to the kitchen in expectation. Those are big things! It shows that he is becoming more engaged in the world around him. Sasha is very musical and loves to sing. He can even count to 10! Now, he totally doesn’t know what numbers are or that he’s counting, but the team counts to 10 each day during yoga and he is repeating what he hears. He even does it with the same intonation as the team. It’s so cute.

Sasha loves cuddles, eating (I think he’s the neatest eater of our boys), his toys, old Soviet children’s songs, and being with the people who love him. We love Sasha deeply and are so very thankful God has put him in our family.

How you can pray for Sasha: Pray for Sasha to continue to become more engaged in the world around him. Pray for good control, or even healing! of his epilepsy. Pray for our team to have wisdom in how to best reach Sasha and teach him new things.

Yaroslav joined our family this past April, is now 27 years old, and lives in Side A of the duplex with Vova, Lesya, and Carlos the cat. Oh Yaroslav (aka Yarik, Yaroslavchik). Yaroslav gives us a run for our money, just like we always knew he would when we dreamed of getting him out of the institution. He is such a character! I think anyone who has ever visited the Isolation Hall at Romaniv remembers Yarik well. He is just someone that is impossible to miss. He is full of so much life, energy, charisma, and fire- you just can’t help but react to his energy. Sometimes I look at him and I just can’t believe that he is here with us and not at the institution. He was such a presence there!

If you’ll remember, Jed brought him and Vova straight out of the institution and to Germany where they were refugees with us in the church. It was a really miraculous story and I think that’s why it’s sometimes still a little hard to believe it happened. We don’t have official guardianship of Yaroslav and Vova but will start the paperwork process for that this next week. We’ll have a big celebration when they are legally members of our family, but in our hearts, they are already ours.

Yarik has grown and changed a lot since we brought him out of the institution in April. He walks so much better, it’s really incredible. He has good days and bad days, as far as mobility and coordination, but most of the time he is completely independent in his walking. He needs a wheelchair for longer walks, but around the house he is independent. He is learning, slowly but surely, about boundaries and the rules of how to live in a family, but he is sooooo smart. We know he’ll get it. He’s much smarter than we ever realized before. He understands cause and effect, consequences for poor choices, and all sorts of things. He likes “helping” in the kitchen and drinking coffee, but most of all he loves people. Yaroslav longs for love and attention. Like all the rest of our boys, after living a lifetime full of neglect and abuse, his need for love and attention is like a bottomless pit that will never be filled. Sometimes his attention-seeking behaviors can be pretty destructive and tiring to manage, but we know that his journey of healing has only just begun and it won’t always be like it is now. We have hope for his future.

We dreamed of having Yarik in our family for years. I’m so thankful that dream finally came true!

How you can pray for Yaroslav: Yarik has pretty fragile health, so prayers for his health and physical wholeness would be appreciated. We recently did some genetic testing but are still waiting for the results. We want to know how to best care for his physical body and hopefully, we’ll get some answers in that testing. Please pray for Yarik and his brokenness in attachment. He is highly emotional and extremely dysregulated, especially when it comes to relationships. Please pray for him to have peace in his heart and mind, and to better understand the immense love God has for him.

Vova joined our family this past April, is now 27 years old, and lives in Side A of the duplex with Lesya, Yaroslav, and Carlos the cat. I am so so excited to share with you about our Vova (aka Vovka, Vovchik)! Vova is doing absolutely fantastic and his journey of healing over the past 8 months has been nothing short of miraculous. I am just in awe of God’s love for Vova. When Vova was in the institution we heard a rumor that he had Phenylketonuria (PKU), but the diagnosis was not in his paperwork. Once we took him out of the institution and I began to read up on untreated PKU and its symptoms, the more I was convinced that Vova was suffering from that disorder. The wait to get testing and help for PKU in Germany was months long and we ended up returning home before anyone there could help us, but FINALLY, in September we got the official diagnosis. To put it simply, PKU is an inborn error of metabolism that prevents the body from processing an amino acid found in protein. For someone with PKU, protein is toxic to the brain and when left untreated, the person develops a severe intellectual disability. Our Vova’s PKU was untreated for 27 years. 🙁 The only treatment for PKU is a carefully controlled low-protein diet and the introduction of medical food, which provides Vova with a form of protein his body can use. In the US and most other developed countries when a baby is diagnosed with PKU their treatment is overseen by a team of specialists: a doctor, nurse, and dietician. But here in Ukraine, there is a doctor…and me. She basically gave us a couple cans of formula, a list of foods Vova can’t eat, and a wish for good luck. Ha! Let’s just say that my learning curve has been steep. But, over the past 3 months, our team has worked together and we have Vova’s PKU under good control. I do the research and math, write his weekly menu, and go grocery shopping for his special foods. We hired our friend, Inna, and she comes once a week to the duplex to cook for Vova. She has to weigh everything as she cooks and then portions out each meal by weight. Everything goes in the freezer and then the team just consults the menu and pulls out his meals for each day. It’s the only way a team of people could accurately treat his PKU. It’s a lot of work, but it’s going well!

At first, I think the team was a bit skeptical, and I’ll admit, I was too. We knew that some of the effects of untreated PKU are irreversible, but we hoped to see some sort of change after the diet was started, even if it was small. It’s just impossible to know which aspects of Vova’s disability are caused by the untreated PKU and which aspects are caused by him living in Romaniv all those years. The only way to find out was to begin treating the PKU and watch what would happen. I didn’t expect much, but Vova is changing and it is miraculous to watch! He is making so much intentional eye contact. He is happier, more peaceful. A previous doctor told us he had cerebral palsy because he was so spastic, but the geneticist (our PKU doc) thought the spasticity was more related to his untreated PKU. She was right. His muscles are still tight, but nothing like they were before. Untreated PKU has a really horrid smell and the whole house just reeked of it. No more! Vova smells fresh and clean every day. Vova used to yell a lot- kind of like a singing yell, but super loud and once he started you couldn’t get him to stop. He would randomly start yelling in church, in the car, anywhere. Now he barely ever does that and when he begins you can sometimes get him to stop just by talking to him. Another major thing is that he has started to toilet train! He was fully in diapers and had no interest in the toilet before, but now he will go there himself! He needs help, but he shows when he wants the toilet. It’s unbelievable. He is like a different person.

I am so thankful for our doctor here who has come to truly care for Vova and is so helpful to us. There is a wonderful community of Ukrainians with PKU who have donated their extra formula to us to get us by until the government starts to provide it to Vova in the new year. Our team has done a great job of following instructions and being careful with Vova’s diet. It is truly a team effort and we are rocking it. I’m just thrilled and thankful that Vova has this opportunity to truly LIVE. It’s just great.

How you can pray for Vova: Please pray for continued healing of Vova’s brain and body from the years of untreated PKU. Pray for a reversal of the harm it has done to his body. Please pray for Vova to grow in understanding of our love for him and God’s love for him and for him to learn to trust more. Pray that he would not be afraid.

Thank you again, for walking this journey with us. Thank you for loving our boys and caring about their lives. Thank you for supporting this work so that our boys could be free and live lives full of love. We are thankful!

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