Wednesday, March 30, 2011

dwindling drum roll

I wish I was asking for a drum roll to deliver great news about Yuri but I'm not. If you were doing an anticipatory drum roll you can stop. I'm sorry my spirits are low today. I am trusting God that He is going to work all this out for His glory.

We had the much anticipated Geneticist follow up appointment yesterday to go over all of Yuri's labs and MRI. We were so hoping for answers. Everything came back normal except that his pituitary gland is underdeveloped and so are his optic nerves. He has all but one of the symptoms of Septo-optic dysplaysia. However SOD wouldn't account for all of his symptoms and most importantly his mental delay.

So now we see more specialist. Because of the anomalies of his eyes he does have poor vision we just don't now how poor. We are going to the Ophthalmologist tomorrow a fact I excitedly told the Doc but he said there is nothing that can help this type of vision loss.

We also ran two more labs, one is an expensive long shot and the other won't tell us anything really. Josh and I are just grasping at anything for answers, for a little peace.

Yuri was his normal self for the entire visit yesterday and he had everyone's attention because he was so loud and unhappy. When we were trying to talk to the doctor we could barely hear him over Yuri's noise. The nurse made a comment about it and Josh said this is normal from, 7:30am to about 11:30pm he is constant motion and noise, if he isn't making the noise himself he is making someone or something else make the noise. I was almost in tears at the 'no' news and the nurse understood.

It felt so good to have someone really understand how hard Yuri is. She walked us down to the lab and she told me that she has been doing 'this' a long time and something has to be going on with Yuri that can be fixed or helped.

Yuri bangs his head on this in order to push the button to make it light up and play music.

This was the first toy he ever played with and didn't immediately throw.

He is cute!

This was before he took all the letters off the fridge.

Remember how hard the orphanage visits were for us. How exhausting? We thought it was because the boys didn't see us as their primary care givers and we were still in the orphanage. I now realize it was just Yuri. I would never try to just sit and play with Yuri for 2 hours right now, it would be miserable for both of us. But yet that is what we were doing everyday sometimes twice a day. Anyway that was just a revelation for me. I'm off to make more phone calls.

31 comments:

  1. I have no idea how hard this must be for you, but please know that I read your blog often and will be praying for you and your family.

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  2. Autumn, keep in mind you are laying down your life for Yuri and your family. Just like Jesus did for us. Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
    Take it one day at a time and try your best not to worry about the future (Matthew 6:34). Also keep setting your mind on things above and your reward in heaven (Colossians 3:2)!
    I'm praying for God to give you all the strength you need to keep going, raising your boys for His glory!

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  3. Dear Autumn,
    I found your blog back awhile from Adeye's. I have been reading since you were there or at least since you came home with the boys. I have a heart for parents who have adopted challeging cherubs. I realize that no 2 journeys are the same, but some of the emotions (exhaustion, frustration, confusion, weariness, loneliness, overwhelmed, fear and heartache) are universal.
    Thankfully we don't usually experience all of these emotions at once! Thankfully God is bigger than our greatest fear and able to bring peace in the midst of the noisiest chaos.
    But still...I have found that in my moments of self-pity...God has, in His mercy, reached out to me and gently restored me and still blessed me with real women who have walked a mile in shoes like mine.
    May the Lord refresh you, direct you and open doors that seem to be closed for you and your children.
    Love,
    Holly

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  4. I am so sorry to hear how hard this has been. I'm no expert, but it sounds like Yuri's orphanage experience has been more damaging than his brother's. Maybe it will just take him a lot longer to adjust and learn and change? Poor baby. Don't you wish we could just see what's going on in their minds? Be encouraged, though. There will be brighter days. I will be praying for you!

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  5. I will pray that God gives you strength through this time. He is just a cutie pie. Love the pics!

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  6. HUGS Autumn!! I'm so sorry that you are going through all of this with Yuri. I hoped and am still praying that you will get some answers to his problems and he and the rest of the family can be happy. Email me if you need to chat!!

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  7. Have you had his heavy metal testing done? I get confused with who has had what tests, but I know that getting excess metals 'cleaned out' can help with MANY behavior issues. My sister-in-law takes my niece (Lyme Disease) to a place in Nashville. Dr. Burnui, I think.
    http://www.restoreyou.net/
    Please email me if you need to! aukatie@aol.com

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  8. Praying you find the answers you are seeking.....we adopted from Ukraine two and half years ago and I know first hand how exhausting these little "blessings" can be :) Hang in there!

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  9. He has such a cute little smile!! His cheeks have also become a little more chubby. Hang in there Autumn, the doctors will find out whats wrong with Yuri. You doing a great job!! Take care

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  10. Oh my goodness, I am so sorry you don't have any answers. I can only imagine how frustrating it is to 'know' there is something not right, but be unable to find it to fix it. I know you won't stop until you have answers...but it can be so exhausting. Praying for peace and calmness in your home. Be kind and gentle to yourself...you are doing your very best and it's a tough time in life now.

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  11. Hi
    I've been following your blog for awhile. I'm hoping that now you have something to go on this link might help you find resources and info. The foundation was very helpful for me when my son was born with kidney failure and had growth delay.It will take time, maybe even years, but I know things can only get better :0)

    http://www.magicfoundation.org/www/docs/101/septo-optic-dysplasia-optic-nerve-hypoplasia

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  12. He IS absolutely adorable Autumn. I can't believe the change in his looks since he's been home - like Bohdan, he just LOOKS so much healthier (I imagine a lot of it is LOVE but also the difference a little sunshine makes!). You are doing an amazing job with these kiddos, I hope someone is by your side all the time telling you that you are an incredible mama because it is true!

    My heart is broken for Yuri, I am in tears. He is such a precious little boy and it is obvious that something is bothering him that is causing him to behave this way. If only he could tell your WHAT! I'm so sorry that you didn't get any answers and that the poor little guy is having such a rough time. I wonder how much of the "mental delay" is related to the hand he was dealt in life? My step-son was born with several anomalies that could not be related to any one condition, I wonder if Yuri may just be suffering from multiple, unrelated issues? It was explained to me that sometimes, something goes wrong somewhere prenatally during development and that *something* can effect several different areas that may not necessarily be related to each other. Anyway, I know that's not particularly helpful, I'm just thinking out loud...Does he act as though he is in pain?? I so wish there was something that could be done to help him :o( Thinking of you!

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  13. I have been following your blog since before you brought the boys home. We are in the process of adopting two boys from China and we believe our oldest has Septo Optic Dysplasia or De Morsier's Syndrome based on his symptoms and CT scan. I have done a lot of research on SOD these last couple months and the symptoms can be widely varying in severity. Kids with SOD can have mental delays. I will attach a link that explains the syndrome quite well.
    http://www.magicfoundation.org/downloads/ONHpdf272.pdf

    I am also part of a yahoo group for families of kids with SOD and from reading other people's experiences I have seen that kids can be mild to severe. If you would like more info, I would be happy to send you all the links I have found. There isn't a ton of information because it is such a rare issue.

    I can only imagine how hard it must be trying to sort out what is wrong with Yuri if he has SOD, years of sensory deprivation from living in an orphanage like his, and possibly something else as well.

    You are in my prayers because you definitely have a whole giant plate full of challenges right now. I wish I lived closer because you sound like you could really use a break. I know God has lead me to things which have greatly helped my children with their special needs and I will pray that he gives you and your husband great wisdom in this area.

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  14. I'm sorry you didn't get any definitive answers for sweet Yuri. I'm also sad that he is proving to be difficult for you. I love his sweet little face. He reminds me of a little boy named Daniel that I adore so I feel a little tug in my heart for little Yuri.

    I know it's probably making the bonding process harder, but don't give up on the sweet boy! God chose you for him because you were right for him and he for you.

    There's an answer somewhere, keep with it. Give it time. Every child is different, but keep fighting for him! I'll keep praying on my end!!

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  15. Sweet friend, you really don't know me, but I just want you to know that I think you are doing a fabulous job with those boys. And above all else, you are being like Jesus to those boys. In the midst of how hard it is, and I can't even imagine how hard it must be, I hope you will remember how proud of you God is, and how He is cheering you on, and how much He loves you. I just know that it is people like you who are really doing what we are supposed to be doing here. Even when it is so hard, and I'm sure you don't feel like you are being a blessing or having the right attitude all the time. You are still being Jesus to that little boy. I wish I lived nearby and knew you so that I could help you carry the load. I hope you have plenty of people who can. I am praying for you! Praying it will not always be this hard, and praying that you will get answers soon.

    Love in Jesus,
    Holly

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  16. I feel your exhaustion and pain. Wish I could help you. I will pray that God will reveal the answers and lead you to the right doctors. I am far from an expert but it sounds like he is seeking/needing stimulation 24/7. Have you thought about an oct? I have no clue. Does he interact with you at all? Maybe some sort of Autism?Wish I could be more helpful. Try and get someone to help you at home to ease some of your stress.

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  17. Oh Autumn, I am so sorry to hear how difficult things are with Yuri right now. You and Yuri will be in my prayers. I hope you get some answers soon.

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  18. Hang in there, there is a reason Yuri is your son. He will edventually get the help he needs. God will guide you there, I pray. It must be so difficult coping with your other 3 babies too. I have one adopted son from Russia (who throws everything in sight also), he is now 3 and has an amount of challenges, it's even hard for me to have play dates, as the kids visiting get hurt by getting hit by flying objects!!! I can't begin to think how you deal with it, but you are very strong and doing everything in your power to help your son. Hang in there, wish I could help!!!

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  19. I do not have children, yet. But, little Yuri is such a cutie and well, imagine his life had you not taken the step to adopt him. Hopefully, the doctors will soon be able to give you answers, but you are a blessing to these little boy and while the road can be difficult, God will get you through it. He has color now and he is a good looking boy :).

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  20. I am sorry things are hard with Yuri. Perhaps if he didn't see you for two days straight, he might realise he misses you and wants you back? Just a thought here. Sometimes we take some people for granted until they are taken away from us, and we realise we miss them. I don't know if my comment is appropriate. I'm glad for the nurse's input that something can be done, you just don't know what it is yet.

    You're doing great!!! it's just difficult not knowing what to do with the ongoing resistance. I can understand it can get too weary. Will pray for wisdom, peace and strength for you and realisation for Yuri that you are on his side, not against him.

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  21. Poor Yuri. He does sound absolutely miserable. I hope you can gain more insight soon. It seems like there was a very real reason for his placement in the laying room (whereas Bodhan's placement in that room really perplexes me. He is just adorable and he seems like such a delight!)

    I have a question for you and I hope it doesn't come out the wrong way, but here goes...
    Clearly, Yuri is a miserable child. I just wonder what will become of him if it turns out that he can never live independently and he remains as intolerable and awful as he is today. Can you really live the rest of your life with an awful, miserable person who makes everyone else feel miserable as well?

    I ask because based on what has been written here (and perhaps this is off, as I know the contents of a blog account for a very small piece of the total picture), you definitely don't seem happy and it doesn't sound like you've formed any real bond with this child. At times, it sounds like you even regret the decision to adopt Yuri. (Though I don't expect any parent to admit this, especially to the people who donated and supported the adoption. But it's extremely difficult to imagine NOT regretting the adoption of such a miserable child.)
    And even though I'm sure you have love for Yuri, that doesn't negate the fact that our loved ones can be downright miserable. Is it really possible to spend a lifetime with someone who is just awful to be around?

    I know I'm not the only person who's wondering if perhaps he was better suited for the institution --- certainly not the harsh conditions he was in, but maybe he's just not suited for a family.

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  22. Re: "SOD wouldn't account for all of his symptoms and most importantly his mental delay..."

    Um, are you sure?
    I Googled Septo-Optic Dysplasia to learn more about it and according to the National Institute of Neurological Disorders and Stroke, mental delay is a hallmark symptom.

    Here's one page that discusses it:
    http://www.ninds.nih.gov/disorders/septo_optic_dysplasia/septo_optic_dysplasia.htm

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  23. I wish I had the right words to comfort you but I dont. Just know that you are in my prayers. You know that nurse was right there probably is something going on with Yuri it just needs to be figured out...in the mean time take care, it WILL get better.

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  24. I know it is hard for you to see being on the front line, but I see a huge change in Yuri physically. His pictures show him filled out and happy. I know I am not having to live the life and only get the glimpses that you capture with the camera, but hang in there. It is very obvious to us outsiders that your family is making a huge difference in the lives of these precious angels. Praying for an answer and peace!

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  25. Darling pictures of Yuri! His face seems to look less tense and worried every time you post pictures! I understand your frustration with not getting a definitive answer about Yuri's issues....I've been checking your blog frequently since his first appt., hoping to hear that something would clearly emerge from his testing, and you'd be on your way toward helping him thrive. With his pituitary being such an important gland, will they be giving him any hormones or anything to compensate? Praying for more answers to come forth, and for peace for you in the meantime!

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  26. I have been praying for yu regularly since I started reading your blog while you were in Russia. I' now no better how to pray for all of your needs
    Sincerely in Christ,
    Jackie

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  27. Awwwww, Yuri. I am so in love with his little self. I am so sorry the answers for his issues are so slow in coming. Don't loose heart, there is help out there for him. Keep pushing for those answers. I keep praying for him and you.

    ~Barbara

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  28. I'm so sorry you weren't able to find any answers. I was praying that something would come to light that would help you all. I will continue to keep you and Yuri in my prayers.

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  29. I've been praying for you since reading about you on Adeye's blog. Yuri is so sweet and has changed so much!

    I wanted to encourage you to continue searching---God knows what Yuri needs and will guide you. One of our sons is now almost 7 but had some terrible years from 2-4 until we realized the impact gluten had on him---he would throw things, scream, had severe speech delays. We only found out about his celiac through investigating his allergies. Then found out he was severly anemic which also caused learning problems. Our son is most definitely a different child than he was even two years ago. Yuri may be intolerant to something he is eating (the throwing up would be a clue to that)----the book Is This Your Child by Doris Rapp is an excellent resource. Search for the youtube of her appearance on the Phil Donahue show to see how some kids react negatively to foods. When our son accidentally gets gluten now, he has BM issues, his speech regresses and slows, he seems to be in a "fog", and the last time he stopped feeding himself---it definitely affects his brain.

    We prayed out of James 1 asking God for wisdom so many times---I will be praying that verse for you as well. You are in inspiration!

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