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 to 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 intracranial pressure. Because of this, there is no need to expand his skull. They said that if he doesn’t have intracranial 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 opinion. 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 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 one 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 use it before trying for anything more. Because of his age, it looks like from the x-rays 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 “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!
