Sunday, September 16, 2012

Life is never boring and God is always good

I received a comment from Judee to one of my posts asking questions.  I LOVE that!  My brain only works half the time these days and I never go back and read my previous posts, so if there is something I mentioned and then forgot to follow up on please ask me.  I'd be happy to answer any questions (maybe not in a timely manner, but eventually).

Judee asked: 1) You mentioned previously that one of the first three children experienced a regression after the boys came home. How is that child doing now?

Answer: Great!  This particular child has, from day one, really struggled with attachment/bonding and we have had to work intensely to over come that.  Bringing new children home can set you right back at the beginning.  But we work hard to show how much we love them and things are back to normal now.  Thanks for asking!

2) Daniel is TALKING??!!! You haven't mentioned speech therapy, so how did you bring that miracle about?

Answer: Don't be too fooled.  His speech/signing is very inconsistent.  He so rarely does it that when he does I head straight for my phone to video it.  So what you see on video is just about how often he does it.  In fact the video where he signed 'more' is the last time I was able to get him to do it.  He is mimicking more then in the beginning, but still inconsistent and he really does not use language purposefully...yet!  No speech therapy yet, we just work with him at home :-)

Thanks for the questions!





Daniel continues to be simply amazing!  His smile and gentle nature still capture our hearts.  We are so grateful that God gave us the courage to adopt him.


Although we have reached somewhat of a plateau in his development he is still learning new things and doing old things with more ease.


We had him evaluated and basically, across the board, Daniel's development is equivalent to that of a 9-month-old baby.  We also had MRIs done on both boys.  Even in the hospital they are still such smiley and joyous kids.




We knew we would see some damage in Daniel's brain but I don't think we or our Pediatrician expected what we saw:


      


If you have seen an image of a healthy brain you can see how much damage there is here.  The white and very light gray is brain.  The black and dark areas are fluid.  For the most part where you see dark areas, you should see brain.  Basically everywhere you see dark areas is where Daniel suffered so much damage that he is missing that part of his brain.  He is missing a significant amount of brain tissue.  Looking at that, it really is amazing that he is even doing any of what he is doing.  We see the Neurologist tomorrow and maybe he will have some insight, but the Pediatrician told us "don't limit what he can do, but looking at this I would not expect him to talk or walk any time in the next few years."  Having these images really doesn't change anything, we keep on with teaching him and giving him every opportunity to learn and grow.  But it does give us a good dose of reality that the way he is just might be the way he always will be.  We have had to seriously discuss making our van and house accessible and figuring out how we are going to bathe and lift and get him around when he gets too heavy to carry.  I know many of you will want to comment telling us not to limit his ability, or not to sell him short or something of the sort, please don't do that.  Sometimes those comments sound condescending.  Please know that we are doing everything humanly possible for Daniel, and we have no limits on what we think he can achieve, but we also have to be realistic.  And the reality right now is that he has made huge gains but we have reached a plateau.  There are things we work on all day every day that he simply cannot understand or do no matter how we try to help him or motivate him.


Please do not get me wrong, it is such a joy to be Daniel's parents, but I don't want to mislead anyone considering adopting a child with great needs.  It's a lot of work, a lot of lifting and moving, a lot of stretching and therapy which requires a significant amount of time and patience, a lot of feeding and changing dirty diapers, etc...just picture taking care of a 40 pound 9-month-old infant.  It's stressful, frustrating, and exhausting but it is also beautiful, encouraging, and rewarding.  Caring for Daniel has led to some of the greatest spiritual growth we have ever experienced.  It has allowed us the opportunity to learn servanthood and selflessness (lessons Tyler and I desperately needed to learn).  We have been so encouraged by God's grace towards us as we learn to live the scriptures.  There is truly unspeakable joy in doing the Lord's work.  And my goodness, one smile from our boy makes everything worth it!!!  And no matter how many hours and days we have to work with him on even the simplest task, once he accomplishes it and we see that look on his face like 'look mom, I did it,' well there simply is nothing greater!  Our sweet Daniel, how we might have missed so much without you, thank you for being our son and making life so rich and so full of joy!  We love you to the moon and back!



video

Bohdan is doing simply amazing as well.  I am so struck by how quickly children can learn English.  It has only been about 3 months since we got the boys and for the last 2 weeks he has been using only English.  It's incredible when the other kids use more Russian words than Bohdan does!  They still speak to him using Russian words and he responds in English, it's so cute to watch.  You know we are a very language confused house when our son whose first language was Mandarin, learned English, has a good working knowledge of basic ASL, and speaks to his Ukrainian brothers in short Russian phrases.  Cracks me up!  But in all seriousness, we are sad to see his Russian fade.  And it is hard to see him 'in between langauages' with no real way to express/explain more complex thoughts and reasons.  I know he will get there, and we work diligently on it, but right now it's hard.  But Bohdan takes it all in stride.  His joyful spirit is a thing of wonder, I tell you!  He just keeps smiling and loving and learning.

I am still so amazed at how well he has adjusted and how happy, kind, and loving he is.  With adopting older children we really expected some of those concerning attachment and behaviour issues.  We see so many families struggle with them.  We have not experienced them hardly at all!  We praise God that He really answered all the prayers to prepare Bohdan's heart and mind for all the changes and adjustments he would have to make.  If I had to describe him, he is pure joy.  He has this contagious excitement over even the smallest things.  And I can hardly type this without crying...he thanks us for everything!  "Mommy, thank you for taking me to the zoo," "Mommy thank you for school today,"  "Daddy, thank you for letting me play outside."  Pure joy and pure love!





His MRI confirmed Cerebral Palsy but our Pediatrician showed us his scan and told us that to the untrained eye no one would ever notice any irregularity in his scan.  This is very encouraging that quite possibly his delays are due to the institutionalization and not inability.  We are teaching him here at home at a kindergarten level and it's a perfect level for him.  He is picking up things quickly, I have no doubt that he will catch up.  The only changes we have to make for him have to do with his vision.  He is scheduled for another vision test in two weeks which should give us a clearer picture of what is going on.  However, his eyes have become more stable, something the Special Needs Pediatric Ophthalmologist said would not happen.  He needs a little bigger print, but really has no problem identifying letters and pictures in books.  His writing is coming along too so he is certainly learning to adapt.  We continue to learn about ways to help him with vision.  We are working on a lot of Occupational Therapy type things like teaching him to really observe his surroundings and be aware through sight and touch of the things in his environment.  He is so much more aware of curbs and things he used to trip over and run into.

Bohdan is also finally receiving Physical Therapy.  But really all I think he has needed is just opportunity.  He is improving so much just having freedom to learn, experience, explore, run, climb, throw, swing, and play.  Bohdan, you bring so much laughter into our lives, your contagious joy is such a delight!  We are honored to call you son!  We love you to the moon and back!


video

In other news...

Our schedule is still packed with doctor's appointments and therapies.  Every week I keep thinking 'next week or next month this will slow down right?'  When you have 4 kids with special needs I am learning that this is just life.  I am slowly accepting our 'new normal'.  Honestly though I am happy that after having to fight so many battles just to get Bohdan and Daniel seen that things are finally moving along smoothly.  I have pages and pages of notes recording how much I have had to call and beg and plead and fight for everything from an appointment with the special needs Pediatrician to getting him a wheelchair, it had been ridiculously hard.  Tyler finally had enough of people giving me the run around that he took over and whoever he talked to got the message because now we have an insurance case manager and we get weekly calls from the children's hospital's social worker checking to make sure we are getting what we need.  Thanks honey...you rock!


When we are not home schooling or rushing to appointments we try to squeeze as much fun as we can in for the kids.  Especially for Daniel and Bohdan we love simply letting them have fun!  Watching them as they experience all these new things for the first time is so much fun!  Adoption has given us such a window into our adoption into God's family.  I see my kids grow and learn and experience new things and my mind thinks about how God watches us learn and grow through sanctification.  When we finally 'get' a lesson He is trying to teach us or when we experience joy and delight in His world.  Or when we are completely at the end of ourselves with how to teach/parent these kids and have to lean completely on Him...adoption has certainly provided us with the greatest spiritual growth!


Anyway, here are some (okay, a lot) of pictures...

Another baseball game...and finally a family picture!

We had so much fun at Joshua and Hailey's birthday party, thank you Rachel!

We simply could not miss the robotic dinosaurs on exhibit at the Natural History Museum

Another trip to the zoo...one great thing about homeschooling is visiting the zoo during the first few weeks most kids are back in school.  We practically had the place all to ourselves :-)

Hubby treated us to a special trip to the amusement park to get wet, ride lots of rides, and eat tons of junk food!


The State Fair was so much fun!



Daniel is going to have surgery some time on October.  His muscles are so tight they are pulling his hip joints out of socket.  To keep his hips from dislocating the surgeon will clip his tendons to lengthen them.  If that does not work they will have to fracture or break the bone to reshape it.  Please join us in prayer for God's healing.


Our prayer for Bohdan is certainly healing for his eyes, but also for his continued development and growth in the knowledge of the Lord.


Poor Ethan gets left out of our blog posts.  Our prayer for Ethan is always Proverbs 2:1-11 "My son, if you receive my words, And treasure my commands within you, So that you incline your ear to wisdom, And apply your heart to understanding; Yes, if you cry out for discernment, And lift up your voice for understanding, If you seek her as silver, And search for her as for hidden treasures; Then you will understand the fear of the LordAnd find the knowledge of God. For the Lord gives wisdom; From His mouth come knowledge and understanding; He stores up sound wisdom for the upright; He is a shield to those who walk uprightly; He guards the paths of justice, And preserves the way of His saints. Then you will understand righteousness and justice, Equity and every good path. When wisdom enters your heart, And knowledge is pleasant to your soul, Discretion will preserve you; Understanding will keep you,"


Kai has Spina Bifida and he had to have a repair surgery done when we brought him home from China.  His spinal cord was tethered also so they un-tethered it.  The Neurosurgeon told us that because of the anatomy he did not think his cord would ever tether again (something that happens frequently in people with SB).  Well it looks like it might be tethered again, which is not good two years after his surgery.  His left foot is becoming 'tight' again and he is falling quite a bit and his Pediatrician said it is concerning enough to see the Neurosurgeon again in November.  Please join us in praying for God's healing.


Emma is the girl that refuses to grow.  We feed that girl so much and pack extra calories and nutrients in her meals like we do Daniel's but she has only grown 1 inch and gained 1 pound since we brought her home from China.  The doctors are starting to wonder if it is a genetic disorder and want her to have some genetic testing if she does not grow in the next 6 months.  I just don't know how we can get her growing.  We continue to work hard on getting her caught up developmentally too.  Please join us in praying for her growth, both in stature and developmentally.

So hopefully we have you all caught up on everyone.  We are ever grateful to God for our crazy, busy, exciting lives.  I hope you don't mind me thanking you all again for your love for the boys and our family!  I know I say it a lot but we never forget all the prayers and donations that were made to bring the boys home and how you carried us all through this journey.  Thank you...again!

26 comments:

  1. Thank you for this awesome update - you continue to be my hero, because you were and are obedient to the call of Jesus in your lives.

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  2. Thanks so much for the update. I think about you often. The boys look amazing and happy. So delightful to see them. You're doing an amazing job as parents to these beautiful children. Praying for you all! XO
    Debbie

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  3. So glad to read this update. I understand about having a 45pound baby; my son does talk to me, though. You're doing great. I also understand your aggravation about people who say that we'll just trust in Jesus to heal that boy. What if this form of our children is exactly the way they are designed to be? What if they are already perfect in the Lord's eyes? What if they are never healed - does that mean they are less worthy of love? Your kids are great just hte way they are, and Jesus is crazy about all of you.

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  4. Does Daniel have hydrocephaly? Does he need a shunt?

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    1. No doctor we have seen believes he has hydrocephaly (including Kai's Neurosurgeon) but we see the Neurologist for the first time tomorrow and we will discuss it. He does not have a shunt.

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  5. i love reading your blog! it helps me keep things in perspective. when i think things are hard with my daughter i remember people like you who have multiple kids with special needs and i am grateful for your selfless example of God's love. you are doing an awesome job!!

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  6. Thank you for sharing these beautiful children with us. I cannot believe how healthy and radiant the boys look, especially Daniel. So happy to see them enjoying life.

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  7. What a wonderful update - thank you! You are so inspirational, all of you!
    Is it possible Emma might have some type of parasite like many children in Eastern Europe have, that is taking away the nutrients she is receiving? I just read of another family who found it in one of their boys who had been home a few years and had trouble growing. You know best - just wanted to throw the idea out there!

    Anne

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    1. I am glad you mention that. We had her tested initially when we brought her home from China and then again after Daniel came home with a parasite. So I am pretty sure that is not it, but it's worth talking about with her doctor, thanks!

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  8. I love reading about you and your family. You are awesome!

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  9. Jamie, what a joy to read your posts. I pray every day for you and your children, thankful that you are their parents, for their continued development and growth, and the the Lord will continue to bless you all. Thank you for sharing your progress. deborah

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  10. Thank you so much for the update! It is wonderful to see the progress the boys have made, and to see them loved :-)

    (I guess you have already checked for thyroid issues?)

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  11. So glad to see an update! I was thinking of you all yesterday. I always love seeing pictures of Daniel's smile.

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  12. love your blog!!!! You guys are doing awesome!

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  13. God bless you and your beautiful family!!!

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  14. Thank you for the update and for the terrific pictures. I prayed for Daniel before you chose him and God knew just what he was doing by saving that little boy for you. He was always ment to be yours. It is wonderful to see them both grow and thrive in your family. I know you will love Daniel just where he's at, even if he can never achieve any more than he already has. But I'll pray that with all of that freedom and love you are giving him, as well as the hard work of constant therapy, he will improve, even if ever so slowly. I have been a nurse and foster parent of special children most of my life and I wish I were closer to help, but know that I admire you and your husband for taking on this hard work so joyously. You are a hero. My prayers are with all of you as you continue through the medical struggles for all of your beautiful children. Blessings to you all, Sonja

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  15. So encouraging! I pray for y'all often and really look up to you! God bless!

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  16. Thank you for sharing your interesting post and beautiful pictures. God bless you, Tyler and family. :)

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  17. Nothing makes my day quite like a post about your family! You were so kind to answer my questions - thank you! What you have been able to bring about even in the absence of official therapy with Daniel's speech and stretching his legs is truly impressive. The change in Daniel's eyes never ceases to amaze me; from flat and blank to sparkling and full of life! And Bohden has definitely got some mischief in his eyes! I'm sure you end each day so tired, but feeling so blessed at the same time. God bless your beautiful family!

    Blessings,

    Judee in Iowa

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  18. Jamie,
    Thank you for the update! It is so wonderful to see all the joy! Beautiful classical music in the videos....thanks for sharing that music with the kids. How much fun the kids had stopping and freezing when the music ceased and then moving when it started again!
    Just a thought I feel compelled to share because of my own experiences: Many years ago, ophthalmalogists could not diagnose an eye problem I had (headaches and eye pain). It was a terrible time for me, and my father even thought my root problem was psychological. Eventually, my mom took me to Mayo Clinic in Rochester, MN, and an opthalmalogist there diagnosed the problem. Later, I had a surgery that took care of the problem! When I read of Bohdan's eye problems, I felt such a heart tug, wondering if a second opinion might be helpful for Bohdan. Please understand why I am compelled to share this and forgive my intrusion.
    You work so hard to care...and you don't have a shred of arrogance! Ok, I know that you don't really want a compliment, but just let me give you one, ok?
    Stacy in Indiana

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    1. Stacy, thank you sharing your story about your eyes! We saw the Neurologist and he recommended a different ophthalmologist so we are very excited to call over there! You make me blush with the compliments...

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  19. Thank you for the update. I just had one big smile on my face the whole time I was reading your update. Your family is doing so wonderfully. I can't imagine the hard work it takes for you and your husband - the children are blessed to have you both as their parents. You all are in my daily prayers. May God continue to bless each of you.

    Steph in Los Angeles

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  20. So great to "hear" an update - think of your family often and keep checking in to see if that update has come :)
    Our littlest peanut from China did not grow (body, hair, nails), did not respond to heavy calories or anything our typical docs and nutritionist recommended...we found a holistic doctor who has gotten our gal healthier than ever, unearthed tons of deficiencies via hair analysis and from spring to fall she gained more weight than the whole last year combined! So you might considering seeking some non-traditional methods. Our gal also underwent slews of genetic testing, brain mri etc. but uncovering what diet worked best for her and supplementing with the right vitamins has done her a world of good :)
    on another note, is the fluid on daniel's brain due to c.p., lack of development, just the way he was made? sorry, i didn't understand that part...
    prayers for your family from ours!

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    1. Thank you for letting me know about the holistic doctor! We found out from the Neurologist Monday that a lot of the missing brain is lack of development before he was born so it is congenital. He was born after a placenta abruption so there is also damage from that. It's a combination of the brain just never forming correctly and then what did form was damaged at birth. Amazing he even survived!

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  21. You are an extraordinary and amazing woman who I admire a lot. Reading your blog has taught me a lot.

    Karen

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  22. wow. I wanted to be a neuroscientist at one point. Ended up a statistician. But wow, is all I could think when I saw Daniel's MRI results. For me, I remember seeing my son's results showing no corpus callosum and very little/ thin white matter in most of brain and feeling so much (sadness, fear, but also understanding and love and empathy and loyalty and just so much). I'm amazed by my son every day. Daniel's smile and alertness bring a smile to my face everytime I see his smile and big eyes.

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