Category: Health

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How’s Ruslan

Happy Friday, Friends! Today is officially the first day of spring here in Ukraine and we are hoping spring is actually here, and here to stay. I’m not sure how much snow and ice and melt and rain and snow and ice and melt and rain this soul can handle. We are all aching for spring and will be welcoming it with open arms. Yesterday we fired up the fire pit (see what I did there…) and enjoyed time together in the sun after horse time and it was a glorious glimpse of the spring and summer ahead of us.

I thought it was about time to give you all an update on our brave Ruslan. It’s been 4 months since Jed and Ruslan arrived back in Ukraine from their big American adventure, and almost 7 months since Ruslan’s life-changing surgery. He has put a lot of hard work into his recovery since then and you should hear all about it!

The main concern we had about doing such a major operation on Ruslan was whether we would have the ability to support his recovery once he came back to Ukraine. In the past, we haven’t had the best luck finding quality physical therapy for our boys. In fact, we’ve had no luck at all. PT in Ukraine is mostly passive and we knew needed to find a therapist here who could imagine and dream of a future for Ruslan in which he would thrive, physically, and be willing to join arms with us in making that happen. Also, Ruslan has a very specific, unique personality. He won’t just accept anyone. The PT would need to be willing to form a friendship with Ruslan first, in order for Ruslan to have the motivation to push himself to grow and heal. Everything is relational with our boys, and Rus is no exception to that. He has no interest in hearing from an expert, but he will do anything for a friend. ❤️

So, the biggest miracle I have to report is that we have found the most wonderful, kind, encouraging, gentle, and wise physical therapist. His name is Ilya and he is God’s gift to our boys. Ilya is a peaceful, joyful presence here on the Homestead and most importantly, Ruslan adores him. Ilya comes to the Homestead three times a week and does therapy with Ruslan, and twice a week he also does therapy with Boris. In the future, we hope he will be available to work with all of our boys, but he also works at our regional hospital so he doesn’t have loads of time. But we’ll gladly take what we can get!

When Ilya comes Rus is eager to see him and eager to please him. When he knows it’s a therapy day he waits impatiently all day for Ilya to arrive. They do their work together and then they drink coffee together as friends. It’s a special time for Rus and he is making great strides in his healing! He now walks more consistently on his whole foot (not just on his toes, like before) and Ilya has begun working with him on walking more upright instead of leaning forward so much when he walks. He still very much needs the support of his orthotic and he needs reminders to use his whole foot, but he is getting better and better. When he came home from the US he was still using a walker! We are really proud of him. His healing journey will be a long one, considering the damage done to his hips and spine from years of adapting to his deformed foot, but we are ready for that and feel enormously thankful for the gift of the operation done in California.

I’m also happy to report to you that Ruslan has resumed his work at a local electrical shop! Last year he worked there for a bit but it didn’t go great. He wasn’t emotionally ready at that time. But he is ready now. The trip to the US helped him to grow, emotionally. Our teacher, Inna, goes with Rus to work twice a week for a couple of hours and so far he is doing great!

And the most fun news I saved for last.

Yesterday Ruslan RODE A HORSE. Ruslan. Our Ruslan. The Ruslan who is afraid of everything. The Ruslan who won’t get in a pool or even put his feet in a lake. The Ruslan who absolutely hates trying new things, especially if they involve using his body in a new way. That Ruslan. He rode one of our horses!!!! I never ever imagined Ruslan would ride one of the horses. Drink coffee next to the horses, sure. Brush the horses, why not? But taking a ride? Never in a million years. But he did! And boy was he proud of himself. The great crowd of Ruslan fans watching him from the sidelines was also very proud.

Our Ruslan is a fighter and he is thriving right now in every way. This has been a huge year for him and he has exceeded our expectations. Thank God for his kindness and care for Rusik. Thank you all for your prayers. And finally, a huge shout-out and MASSIVE thank you to Steve, Debbie, Diane, Jasmine, Dr. Nicholas Abidi, and the staff at Dominican Hospital in Santa Cruz for helping to change Ruslan’s life. We will never forget your kindness and generosity.

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Healing From the Inside Out

I (Kim, if you’re new here) wear a few hats here at Wide Awake International.

  1. Mom of EVERYONE
  2. Communications Director. If you hear some news coming from Wide Awake, it’s from me. Hellooooo!
  3. Medical Director. Now that sounds like quite a lofty title that should belong to someone super smart, but alas, it’s just me.
  4. Gardener-Extraordinaire. I gave that title to myself and I’m keeping it. 😆

The mom hat never comes off. It’s front and center at every minute of every day. For our kids, for our boys, I’m always mama. The Communications Director hat comes on about 3 times per week. Sometimes it’s a joy for me to tell our story and sometimes it feels like a bit of a drag, but whether I like it or not, that hat’s not going anywhere. The story’s gotta be told and I’m honored to be the one to do it (except on the days when I really don’t feel like it…hehe). The Medical Director hat is one that I have been hesitant to call my own for many years.

I’m an RN and worked for 12 or 13 years in a hospital in Oregon before moving to Ukraine. I’m a smart person with a lot of experience, but moving to another culture has a way of making you feel like the most incompetent, stupid person to walk the face of the planet. I went from working confidently as a charge nurse in a hospital to not knowing how to ask for the right size of bag for my groceries at the store. I went from being a social, outgoing person to a wallflower who was afraid of opening her mouth for fear of sounding like a toddler because the Ukrainian language was so dang confusing. That lack of confidence and growing self-doubt crippled me for many years. So when we started taking our boys out of the institution the thought of learning to navigate the confusing Ukrainian medical system and fighting for their health sounded like the equivalent of climbing Mt. Everest. I had no idea how to do it. I had no desire to do it. And I had no confidence that I would succeed in finding them help.

Treating Anton’s pneumonia at home

When we adopted Vlad we took him straight to the US to deal with understanding his medical needs there. And then, thankfully, the first 4 boys we brought out of the institution while in Ukraine (Boris, Anton, Ruslan, and Sasha) had no urgent health needs and I was able to dip my toes in the medical system waters without having to fully submerge. We could get by with a couple specialist visits a year and things were “good enough”. Honestly, the trauma they were all bringing to the table was much more urgent than any physical diagnosis. They were soooooo broken in their minds and hearts- their bodies could wait.

We got by pretty well the first few years and their bodies began to heal a lot, just by living in a loving, safe environment. We fed them a diet of healthy, whole foods. They got plenty of sunshine and fresh air. We gave them vitamins and paid close attention to food intolerances. We kept them on their meds and/or added some meds to help with some difficult behaviors. And they began to heal. My Medical Director hat wasn’t really required. The Mom hat was enough.

Then came Yaroslav and Vova and everything changed. Their medical needs were much higher than our other boys and the Mom hat would not be enough- not nearly enough. It was time for me to think like a nurse again and to take charge of our boys’ health, whether I felt qualified or not. So, with my trusty sidekick, Roma at my side, we dove on in- on a mission to get our boys as healthy as possible. And it has been an interesting ride.

The diagnoses we are addressing are (this doesn’t count Vlad who is currently in the US):

  1. Cerebral Palsy x 3
  2. Epilepsy x 2
  3. Foot deformities x 2
  4. Phenylketonuria
  5. Williams Syndrome
  6. Mitral Valve Regurgitation
  7. Hypertension
  8. Phenylketonuria
  9. Gluten intolerance
  10. Lactose Intolerance x 3
  11. ADHD
  12. Anxiety Disorder x 3 (really, all of them except Sasha would probably qualify here)
  13. Microcephaly x 3
  14. Scoliosis
  15. Autism Spectrum Disorder x ???
  16. Fetal Alcohol Syndrome

Plus, we’ve got a host of undiagnosed issues that we are constantly weeding through: frequent vomiting, chronic constipation, symptoms of PTSD (duh), skin issues, frequent bloating, gait problems, balance issues, improperly healed broken bones…

In the hospital in Germany with Vova and Yarik

As you can see, the needs have become significant enough that just acting like mom isn’t going to cut it anymore. First I took on more of a Case Manager role. We don’t have active primary physicians here who are, with a team, managing our boys’ care. It’s all on me and the more boys we have in our care the more organized and intentional I’ve had to become in that role. Roma and I began to search for doctors that we felt we could trust that would see the value of our boys and treat them well. We visited many, many doctors and rejected many, many doctors. We did bloodwork, tested urine, adjusted med doses, weaned off unnecessary meds, and more. We have been to countless specialists and have worked hard to improve our boys’ health, but unfortunately I don’t see much of a difference. In the spring I found myself increasingly frustrated at the perspective of the doctors we visited. They were doing their job, but I felt it just wasn’t enough. I couldn’t be satisfied, but didn’t know how to articulate what else I was seeking. We were treating all their symptoms and diagnoses, but their bodies were so deeply broken by the years of neglect and abuse, another approach was necessary for them to find true health. I realized what I really wanted was healing for them from the inside out. I also realized that if I wanted that for them then I was going to have to take the task on myself. No one knows their bodies better than I do and it is my responsibility to see them live up to their full potential. No doctor is going to dig deep enough. This is on me. Medical Director hat ON.

I began to research how to get smarter. 🙂 I thought maybe I should go for my Nurse Practitioner license, but dismissed that almost right away. It’s not something I could do while in Ukraine and really, it’s not the specialty I’m looking for. After more and more digging I started to become familiar with the world of Functional Medicine. The deeper I dove into that world the more convinced I became that the functional medicine perspective is what is needed for our boys.

What is Functional Medicine? The Institute for Functional Medicine defines it like this: “Functional medicine is a systems biology–based approach that focuses on identifying and addressing the root cause of disease. Each symptom or differential diagnosis may be one of many contributing to an individual’s illness.” Functional medicine looks at the root cause of disease, not just the symptoms. It’s a way of looking upstream, and then addressing issues all along the way while looking at the diet, environmental toxins, mental and emotional well being, and more. Our boys definitely need an upstream, whole person approach and I think functional medicine is the approach that will bring them into greater health. Functional medicine doesn’t replace traditional medicine, but compliments it and works along with it.

Functional medicine isn’t a thing in Ukraine, but I really believe it will help our boys and so I have decided to become a functional medicine provider myself. After graduating nursing school more than 20 years ago I told myself I would never ever go back to school, buuuuuuut, here I am, eating my words. Never say never! In just a few days I will head back to school as a part of the School of Applied Functional Medicine’s fall cohort. Eeeeeek! The program to become a functional medicine provider is a 2.5-3 year process, so it’s gonna take a while, but I’ve heard from graduates that I will be able to begin implementing my learning within the first 6 months, so that excites me. I don’t want to wait any longer for our boys to gain better health.

I’m eager to share with you the things I learn along the way as we walk this new path of healing for our boys. I’m also excited to expand my knowledge and become a more well-rounded medical professional. Our boys deserve the very best and I’m truly honored to do this for them. Here we gooooooo!

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The Best News About Ruslan!

A little over a month ago I had had it with our boys and their feet. Ruslan had once again walked a hole through the bottom of his shoes and another PT had told us that he couldn’t help, and said in fact “No one in Ukraine can help you.” In the throes of frustration, I decided to put it out to the wonderful Wide Awake community to see if any of you knew someone who could help our Ruslan. We had exhausted our resources here in Ukraine and at last, decided it was time to look outside our borders for help. I wrote a blog post asking for help or recommendations for Ruslan and was blown away by all of you! You all came out of the woodwork with ideas and offers to reach out to doctors on Ruslan’s behalf. Many of you even told me that you had been following us for a long time but this was your first time reaching out- and I was so so glad to hear from you! It was really encouraging to see how many of you deeply care for our boys. Thank you from the bottom of our hearts.

I am so pleased and thankful and EXCITED to share with you that a medical team and hospital in California have agreed to treat Ruslan’s foot for free!! It’s really going to happen! I’m still a bit in shock and I’m not sure I’ll believe it’s real until Jed and Ruslan land there in California, but believe it or not, we are moving forward in faith and doing the work on our end to make it happen. It’s so exciting, right?

Who? How? WHAAAAAAAT? I know you are dying to know the details. Sit tight and I’ll tell you. ☺️ Just a few days after I wrote the post asking for help I got an email from a super kind lady in Oregon who had been following us for years, but whom I’ve never met. We have a mutual friend ❤️ from my days working as a nurse in Oregon. She told me that she has a brother who works as an anesthesiologist at a hospital in California. She read our blog, reached out to him, and right away he was interested in helping. The anesthesiologist asked his friend, the surgeon if he was on board and he also agreed! Then that most kind anesthesiologist wrote to the hospital and the hospital answered YES! In a matter of just a few weeks, God put us in contact with the kindest people with the most generous hearts and it’s a go!

I waited a couple of weeks to share this with you because we had to figure out the issue of getting Ruslan a visa. I wanted that situation somewhat in hand before I spilled the beans. Right now, during wartime, the US embassy in Kyiv is not issuing any visas. That means that we had to find an embassy in another country at which to schedule a visa interview. Embassies always prioritize the residents of the country where the embassy is located and on most of the websites, it said that nonresidents would need to wait until 2024 for a visa interview. We really, really didn’t want to wait a year for this surgery when we have doctors and a hospital willing and able to do it whenever we’re ready! But, we worked it out and Ruslan has a visa appointment in July in Bucharest, Romania. We will need to move the date out a bit, but at least we are in their system! That was the most important part. The tentative plan as of now is for Ruslan and Jed to travel to Romania for the visa in late July or early August and then fly straight from Bucharest to California for the surgery. Once the surgery is done Ruslan will be non-weight bearing for 6 weeks. So, all together Jed and Rus will likely be gone for about 2 months. As our new anesthesiologist friend wrote, “Oh what a great adventure we are starting together” 🙂

How you can help: Jed and Ruslan will be in the Santa Cruz area for the surgery. Do any of you live near there? We do have lodging covered for Jed and Ruslan for the time they will be in California. What we definitely need help with is a car. If any of you have contacts in the area who might have an extra car that Jed could use for several weeks in early August it would be a great help. Also, any help with meals or groceries would also be just a wonderful gift. Those first few days back at the guest lodging with Rus will likely be quite difficult and any support any of you could offer Jed would be a blessing to him and Ruslan both. If you live in the area and would like to help in any way, we would love to hear from you! You can email me at kjohnson@wideawakeinternational.org

Thank you again to everyone who went for bat for Ruslan over the past month. We are really thankful for every effort made on his behalf. We don’t take it lightly and are honored that you would speak out. I promise to keep you updated on this journey toward wholeness for our Rus. Praise God for his great love for our boys!

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Fighting for Ruslan 💪

I know I’ve said it before, but here I am saying it again: our boys are superheroes. They really are! They are survivors. After all they endured while living in the institution, they still enjoy life and have learned to love and trust others, all the while daily overcoming the limitations of their physical bodies. They are forces to be reckoned with.

Our Ruslan is a mega-superhero. Is that a thing? Well, I just made it one. 🙂 He has a foot that is pretty severely deformed, and he has never had a shoe that actually fit, but he never ever complains about it. He has to limp when he walks, which over the years has transformed his hips and spine as he compensates for the limp, but he rarely even complains about any discomfort in his body. On the one hand it’s awesome because it just shows how strong he is. But on the other hand it’s sad, the fact that he has just adapted to the pain and has zero expectation that his body could change for the better. Ruslan has resigned himself to his broken body, but the rest of us have not. We want something better for him and won’t stop looking until we find a way to help.

It is not our practice at Wide Awake/Dim Hidnosti to immediately search in other countries for help for our boys, but to try to use only local resources whenever possible. One of our goals is to create something that can be replicated by Ukrainians in other parts of the country. If we rely too heavily on western help we are creating an unsustainable model that is only achievable with western connections. We want to be a spark of change in the culture here and are always on the lookout for local like-minded medical professionals who want to partner with us to help improve the lives of people with disabilities. At the same time, we recognize that this is an extremely difficult time here in Ukraine and sometimes outside help is what is needed. This is one of those moments.

Over the past four years we have searched and searched and have not been able to find any help for Ruslan here in Ukraine. Doctors don’t want to touch him and physical therapists say it is much too late for anything to be done. We tried to find a place where they could make him some special shoes, but only one company agreed to try and their attempt looked like Frankenstein shoes! I kid you not- they were like props from a horror movie. I think Rus lasted about 5 days before he just refused to put them on. They were so heavy and clunky (not to mention uuuuuuugly). He could barely walk in them. No other companies will even try to make shoes for Ruslan. Last week a PT told us “No one in Ukraine can help you. No one.” Hmmmm not exactly encouraging.

Alright, so we haven’t had any luck finding help here in Ukraine, but we refuse to just sit down and accept that. Rus is a young man and he has his whole life ahead of him. Surely we can do something to improve the quality of that life! If we don’t, his posture will only get worse and I fear that someday he won’t be able to walk anymore at all. We have to stay on this and not let it go.

So, now I’m coming to you, our awesome Wide Awake community. Will you help us search for help for Ruslan? We are looking for knowledgeable medical professionals who can become a resource for us and help us to understand the steps we should take to help Ruslan walk better and more comfortably. I have no idea what a solution for Rus even looks like.

Do we need to try to fix Ruslan’s foot with surgical interventions? If so, where can we do that? We need a surgeon to donate his time and a hospital to donate their facilities. Ruslan is a Ukrainian citizen, but he could easily get a visa to the US, for example, because Jed is his guardian and Jed is a US citizen. Several years ago we got a visa for Boris that way with zero problems.

Is surgery impossible or too big a risk and we need special shoes made? Great! Who can make the shoes and where do we need to go to make that happen? Our current solution is buying whatever shoe we find that will “semi” stay on his foot and then replacing it every 2-3 months because he walks a hole into it. Not to mention he has to stop every few meters and put his shoe back on because only the ball of his foot stays in the shoe.

Is there some sort of nonprofit out there that helps people like Ruslan and we need to start by connecting with them? Great! Send their contacts my way and I’ll get on it.

We have been advised by an American PT and by Ukrainian PT’s that no therapy will help Ruslan’s foot. Everything is fused in place and the foot is not flexible at all. PT is helpful for strengthening his leg and helping with his back, but as long as he limps the way he does, he will have problems with his hips and back. It seems that we’ve got to start with the foot.

If any of you have any connections to share with me I would greatly appreciate it. Please feel free to pass this need on to others. Surely, there’s got to be someone out there who knows how to help our guy. Let’s find that person together!

BeLOVE[d]

If you have any info or leads on help for Ruslan you can comment on this post or email me at kjohnson@wideawakeinternational.org Thanks!

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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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A Vlad Update!

A Vlad Update!

I (Kim) got to, very last minute, go visit our Vlad in Oregon. He is doing so well. We are really proud of him!

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About School, Health, and Housing

About School, Health, and Housing

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A Tale of 15 COVID Tests

I was at a bit of a loss as to how to name this post.

Some contenders: “A Tale of (a lot more than) 2 COVID Tests”, “An Absurd Tale of COVID Testing in Oregon”, “What I Gotta Do to Get on an Airplane??”, “COVID Testing Before Travel: A Tale of Woe”, “How to Unsuccessfully Exit the USA”…and so on and so on. You get the idea.

We made it home to Ukraine, but the events leading up to our departure were anything but straightforward. They were more poke-your-eye-out type events that involved me crying on the phone to Walgreens pharmacist on more than one occasion. Face palm. Not my finest hour.

A couple weeks before we were scheduled to fly from Oregon to Ukraine we got an email from our airline that stated the Netherlands was requiring COVID testing in order to transit through their airport. Me, being naive about COVID testing in Oregon thought “Hey, no big deal. We’ll figure that out the week we leave.”

The week of our departure arrived and I started looking around for where we could get tested to fulfill Amsterdam’s requirements. They required the test be a PCR test, conducted within 72 hours of arrival in Amsterdam, and the results in hard copy had to be presented before boarding at your initial departure point. Welp, after much digging, and doing rapid testing that was the wrong test altogether (BTW, try doing 8 self-administered tests in a 15 passenger van at a Walgreens Drive-Thru. I dare you. It’s like a fun exercise in team work….or something like that), we came to realize that Amsterdam’s requirements were basically impossible for us to fulfill. No one anywhere could guarantee that quick of a turnaround for PCR testing. We are a family of 9- we couldn’t risk failure. We had to know that we were going to be allowed to board and not be turned away.

So, we had to contact the airline and ask them to reroute us through a different country with more lenient COVID requirements. They rebooked us to fly through France the next week. France accepted rapid tests and they only had to be conducted within 72 hours of departure. That we could do. Although, I think France has now changed their requirements and are now more strict. We got out right in time!

We were scheduled to fly on a Friday morning. I had done my research and found an acceptable rapid testing site in a nearby town and booked us some appointments for Thursday morning. We arrived at the clinic to do the tests, got all the paperwork filled out, and then they dropped the bomb that unfortunately they would not be able to test us that day because our insurance didn’t cover the rapid test. “Oh, that’s okay” I said, “We’ll pay out of pocket. We have to have these tests done since we leave TOMORROW, so we don’t really have a choice. If we have to pay, we have to pay.”

They then proceeded to tell us they couldn’t accept cash from us since we were insured. What??? I’m offering you cash. Please just take it and stick a swab up my nose. Nope. They wouldn’t do it. No way were they going to test us. We were going to have to find somewhere else. Well, I hate to break it to you, but finding another place that would do 7 rapid tests that same day was an impossible task.

Jed and I sat on the phone for hours calling every single clinic we could find and no one would test us. We drove all around town to different clinics and begged in person. We called clinics 3 hours away! We were desperate. I was crying. Kids were crying. At one point Hava blurted out “I just want to go home and eat some borscht!!” It was ugly. It’s not that we were so desperate to leave our family and friends, it’s just that we’d been living out of suitcases for weeks and we had already delayed our return home by a week and we were just done. The stress of saying goodbye to family and friends is hard enough. It’s worse when it drags on and on and on. Plus, we knew Max and Morgan, the new house parents for the duplex, were arriving in Ukraine soon and we didn’t want them to arrive without us there to greet them. Ugh. It was such an emotion fest! The last week of our time in the US is always a little ugly anyway. This just took it to a whole new level. 🙂

Finally, after a couple hours of sitting in parking lots making unsuccessful phone calls, Jed called it quits. There was nothing more we could do. We were just going to have to rebook our flights again. My face hurt from crying and the kids were all hungry, bordering on hangry. We decided to head back to the grandparents’ house to regroup and figure out a new plan.

Then our miracle came. I pulled up to my parents’ driveway and my dad met us there. He had made a ton of phone calls and was able to track down a nurse practitioner friend who works at an urgent care clinic. In fact, that day was her first day working at the urgent care clinic where he found her. She spoke with her office manager and they told us if we could get there in an hour, they could test us. All of us. You better believe we were back on the road within minutes. It was an absolute miracle! I can’t even tell you the relief we felt. We were going home!

The biggest bonus to all of that craziness, was that Max and Morgan ended up flying home to Ukraine with us. They had also been scheduled to fly through Amsterdam, but realized they weren’t able to fulfill the requirements. So, we met up at LAX and flew the rest of the way home to Ukraine together. It was just perfect.

Traveling internationally during this crazy time in history is not for the faint of heart. I think I’m content to just stay home in my little village for a while. The days of COVID test acronyms, insurance policy numbers, health declaration forms, and googling “COVID testing near me” are behind us. We’ll just sit tight in the middle of nowhere Ukraine, thank you very much. 🙂

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What’s Up at Romaniv?

It’s been a long time since I’ve talked about Romaniv in this space! Sadly, that’s because it’s been so long since we’ve been able to regularly spend time there with our boys.

Every year, usually sometime during January and February, Romaniv shuts itself off to visitors. They call it “Quarantine”. They were doing quarantine long before it became a worldwide “thing”. 😉 It makes sense that they would do that each year. Jan/Feb is usually the peak of flu season and they want to protect the boys from people coming in with all the winter germs. So, this year, before COVID was even a thought in Ukraine, Romaniv was already in quarantine.

Then…COVID.

Romaniv was quarantined for many many months. Finally in the summer they told us we could come, but we didn’t feel good about it. We really wanted to make sure we didn’t unnecessarily expose the boys to the virus, and we just felt it wasn’t time. We decided to wait.

Then came the fall, and the realization that waiting is not going to do much good. As much as we hate to admit it, COVID isn’t going away anytime soon, and life must go on. Yes, going to visit could expose the boys to the virus, but not going is not a viable option either. Our boys need to see their friends. They need to be held and loved and safe for a few hours. There are risks to their health if we go, and risks to their mental/emotional health if we stay away. After much prayerful consideration, we felt the green light to begin visiting again.

For three weeks we tried to arrange a meeting with the staff so that we could begin visits, and by the time they were ready to meet, their region had a spike in COVID cases and they closed for another quarantine. NOOO!

All that to say, we still haven’t been able to visit. But, we are waiting (not so) patiently, and as soon as quarantine is lifted, we’ll be there.

One big development that happened in the late summer is that all the boys at Romaniv under the age of 18 were transferred out, to a different institution in Teteriv, and several new adults were transferred in to Romaniv. Those changes came about so the institution could be renamed and reclassified. It has always been called “Romaniv Children’s Home”, even though there were very few actual children there. Out of more than 80 boys, only 5 were legal minors at the time of the proposed name change. Once those 5 were moved out, the institution could be renamed and reclassified. So, “technically” it’s not an orphanage anymore, but we all know that changes nothing. It is still a dark place full of precious souls who desperately need to know the love of family, so a name change makes no difference to us.

We have yet to learn if the move to Teteriv has been beneficial or detrimental to the 5 young ones who were transferred. It’s hard to imagine things could be much worse than they were at Romaniv, although we know that any change is stressful for our boys- even if it’s good change. We don’t have any relationship with the administration there, so we have not attempted a visit yet. Also, all the orphanages are currently quarantined. Sasha, the boy who we hope will be first to live in the duplex was among the 5 that were transferred. Soon Jed will have legal guardianship of him, and then he will have a legal right to visit him at Teteriv. We are hopeful that will help open doors for us to see the other 4 of our boys who were transferred along with Sasha. That reminds me that I need to write a post about Sasha! I’ll do it next week. 🙂

So, while the doors to Romaniv are closed to us, we will keep on keepin’ on here. Our team will keep loving our boys who are already free, and our builders will keep working hard to create a place of beauty for the ones who will soon know freedom.

Would you please join us in praying for our boys at Romaniv and at Teteriv? Pray that God would be so very near to them and that he would bring peace to their hearts. Pray for their safety and health, and that the COVID situation will improve in Ukraine, so that it will be safe for us to visit them again soon.

I promise to keep you updated whenever there is an update to give!

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Wide Awake Summer

Tomorrow a big chunk of the Wide Awake Family heads to the US! We’re leavin’ on a jet plane… 🙂

It has been two years since our last visit, so it’s time. We try to visit Oregon every two years to see family, meet with our Board of Directors face to face, and spend time with our friends and supporters in the Pacific Northwest.

Another big purpose of this trip is to do reconstructive surgery on Vladik’s feet. We had planned to do the surgery when we were last in the US, but at that time Vladik was not ready for such a major procedure. He’ll be wheelchair-bound for 8 weeks after the surgery, and at that time he didn’t have the understanding or emotional maturity to not be devastated by that. Now he is so much more mature in every way. He is ready and wants the surgery. He is also getting taller and heavier and walking is getting more and more painful for him. We just need to bite the bullet and get ‘er done.

I (Kim) leave for the US tomorrow with 5 of the 6 kids. We’ll get Vladik’s pre-op stuff done, and Jed will follow in June. Ezra will stay in Ukraine this month with Jed to help him care for Boris. At the end of May Jed and Ezra will go to South Africa for the World Congress for Occupational Therapy. Jed and Olya, our friend and OT, will present the interns’ work at Romaniv to the Congress. More on that in a later post!

Evie's going to miss her brother this month!

Evie’s going to miss her big brother this month! 

Although we successfully got Boris a visitor visa to the US, we have decided the best thing for Boris is to stay home at the Homestead. A trip of such magnitude would be very difficult for him. He thrives on routine and familiar surroundings, and there will be nothing routine or familiar about our summer in the US. It is so hard for us to leave him. I shed quite a few tears over it, knowing that he wouldn’t fully understand where we all went. 🙁 But at the same, I realize that it would not be kind to bring him along. Our hearts are officially at home in two places and there’s just nothing easy about that. Seriozha (Jed’s assistant) and his wife, Romana, will live at the Homestead with Boris for the summer so he can be in his home with all his favorite things. If you could pray for them for wisdom in caring for Boris, and also for peace in Boris’ heart while we are away, that would be so great. Thank you!

Side note: Boris’ visa is a 10-year multiple entry visa, so maybe we can bring him with us in a couple of years when we visit again!

So, that’s the Wide Awake summer plans. While we are traveling to and fro the team and interns will continue to visit the Boys at the institution regularly, just like always. The construction crew will work on developing the new land at the Homestead and preparing it for the next homes to be built, and Boris will be safe at home with people who love him. It’s awesome to know all the work will continue while we’re away. That leaves us the ability to focus on getting Vladik healthy, the opportunity to rest with family, the chance to connect with sponsors, and the time to dream and plan with our Board.

Gettin’ the garden ready for planting

Thank you all for your incredible love and support of our family and this work. Knowing that people are praying and sharing and giving of their hearts and finances makes all of this possible.

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