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find my family: Timmy

May 22, 2015 by nohandsbutours 0 Comments

Timmy is a precious little guy who needs a family so badly! He was born March of 2011 and admitted into the orphanage in August of 2011. He has cerebral palsy with high muscular tension.

In May 2012 he was sent to Rehabilitation Hospital for treatment. At the beginning he could not raise his head, was delayed development, average nutrition, could raise his head at 45 degrees when lying on the abdomen, could not turn over and sit, language and intelligence was delayed. His condition was better under the common efforts of nurturers and rehabilitation staff. Now he is 1 year 9 months old, can control his head, can turn over under the help, his muscular tension is improved. He also can recognize surroundings and likes watching other children playing.

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He is four years old now, and at some point was sent back to the orphanage from the Rehabilitation Hospital. At four years old he weighs 10 kg and reportedly only eats from bottles. He cannot walk, he can however sit alone and roll over on the ground. The staff have said he does not grab things consciously with his hands, but he sometimes makes a fist unconsciously. This little guy really needs some love and a family, he doesn’t have much of a chance if he remains where he is. He babbles some and cries when he is hungry.

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Timmy’s video. He is receiving PT and OT. He is weak and needs a family to come for him sooner rather than later. He needs to get the attention and nutrition he needs and access to appropriate medical care.

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Timmy has a Reece’s Rainbow account in his name and a FB page dedicated to help him find the family he so desperately needs. For more information please contact the Advocacy Team.

The Unexpected Testimony

May 21, 2015 by nohandsbutours 0 Comments

One of the “perks” (not so much if you are an introvert) of walking the Adoption Road is the availability to share your testimony. I think it might actually be one of the questions on the Home Study Report: Are you ready and willing to share all that the Lord has done (and will continue to do) in your family with complete strangers for the rest of your days, so help you God?

I marked YES, really having no clue what that meant.

Apostle Paul tells us to be ready “in season and out to preach the Word” (2 Tim 4:2). For many of us on the adoption journey we are prepared, chomping at the bit even, to share our testimonies. The amazing miracles that brought our families together; the heartbreak and healing; God’s faithful hand tenderly nurturing each of our adoption roads. When we are with adoption friendly families we can nearly finish each other sentences with God’s great works. There is a secret wink and a smile for families in the adoption world. We get it. We’ve been there and want to be encouraged and challenged by how you’ve been there too.

And for those that aren’t on the adoption road yet, but have any flake of skin on their body that has even given a nano-second of thought towards adoption… we’ll sniff you out! It’s like a weird adoption pheromone. Did you accidentally glance towards an special needs adoption brochure?? Did your stride shorten as you walked by the Adoption Info Night desk in the foyer?? Seriously, we are coming for you. You are going to hear our amazing story and you’re about to have one of your own!

I think it’s fun to share our testimonies with those that have Been There and those that are Getting There. (Not entirely easy though. I still get nervous when I’ve been asked to share at a formal-ish event). The excitement comes in knowing who you are speaking to and who is listening; it’s a harvest ripe for the picking. You get to be a witness to the Holy Spirit moving deeply in people’s hearts. It is really very cool. But I think there is a third and fourth group that ‘hear’ our adoption testimony I hadn’t really given thought to until recently:

A few weeks ago, a sweet Korean mother signaled us across the foyer at church giving me the “we are a Down syndrome family too!” double chin bob-eyebrow rise. I was thrilled to meet another family like us, especially with a 4 year old boy (it was a serious kiss-fest with those boys outside the welcome desk!). We exchanged notes and when I asked if they were new to our church (it’s a big church…easy to miss people), she shared this in her broken English:

“For a long time after our son was born, we didn’t know how to live a normal life. We didn’t know anyone who was like us, but two and a half years ago some friends invited us to this church. We sat in the back and then we saw you and your son dancing during worship. When he fell asleep in your arms and you kept worshiping, I knew we would be OK.”

She smiled sheepishly. I cried and our boys kept making out. I had no idea we were being watched. I wasn’t sharing our story, I wasn’t testifying, we were just being a family in God’s presence (a brand new family at that time, who, frankly, takes up a lot of space during worship). We have plenty of formal opportunities to share our story, to be on display and Praise the Lord for His goodness in our unique family, but for the Holy Spirit to use us to speak to a struggling biological family when we didn’t even know it kinda melted me: an Asian momma with a beautiful baby boy with Down syndrome, overwhelmed with what the future would hold for her family saw hope through my adoption family. Four and a half years ago, half way across the world another Asian momma was in the same place…was there anyone to ‘speak’ to her then? Is anyone speaking to her now?


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Friends, our adoption testimonies are awesome. They speak life and faith and encouragement to each other and to those not yet on our journey. We should be excited and prepared to share ALL that the Lord has done to redeem. Stand up and share your story to small groups or large; write your testimony down (perhaps via an encouragement ministry like No Hands But Ours), show your witness through visual media. Be actively prepared to preach God’s love through your adoption story in every ripe season.

But also, be prepared out of season… to be watched in the quiet moments by the listeners that hear and see the hope that saturates our walks through special needs adoption. Maybe that is the most precious of testimonies… the ones we don’t know we are giving to those who need to hear it most: to the biological family new to special needs who needs to know there can be success.

And to the sweet birth mothers who unknowingly surround us, maybe whose heart is desperate to know her birth child is loved and thriving, somewhere; that her decision at the time was a good one for her and her child. Oh, that we can be a living word of encouragement to them: the unexpected testimony of hope for those we don’t know are listening.

– photo by Tish Goff

Adopting a Child with Kassanbach Merritt Syndrome

May 20, 2015 by nohandsbutours 1 Comments

When I first read Abby’s file and read the diagnosis Hemangioma and Kassanbach Merritt Syndrome (or Phenomenon), I thought to myself, “How bad could it be?” She has a birthmark or as her file called it ‘a large hemangioma’ on her neck and chest, surely once we get her home we can ‘fix’ it! Then I did what every adoptive mom does, I googled! 

(Big, big mistake).

The first article I came across, and definitely one of the more positive ones, was from Boston’s Children’s Hospital. It went like this:


Overview
: If your child has been diagnosed with Kasabach-Merritt phenomenon (KMP), a complication in which certain vascular tumors trap and destroy platelets, we understand that you are very concerned about your child’s health. You probably have a lot of questions about this complex condition and the vascular tumors that cause it.

 Here’s what you need to know about Kasabach-Merritt phenomenon:

 Kasabach-Merritt phenomenon is a serious complication because platelets help form blood clots to stop bleeding. If your child doesn’t have enough of them, your child may have an increased risk of bleeding.

Kasabach-Merritt phenomenon is never caused by common infantile hemangiomas.

It’s associated with the following tumors:

• Kaposiform hemangioendothelioma
• Tufted angioma
• Cutaneovisceral angiomatosis with thrombocytopenia (CAT) also called multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT)

KMP is associated with larger, more aggressive or more deeply invading benign vascular tumors.


After reading that my heart started to flutter, my face became red, my hands were shaking, and I realized I was having an all-out panic attack! How could God be calling me to parent this child? A child with a tumor and a bleeding problem, and a rare, complex disease? I should have known that this beautiful little girl, who had been waiting on the shared list for over 2 years, couldn’t possibly have had a simple and straightforward hemangioma (typical hemangiomas involute or go away on their own within a few years). My heart sank because I knew I could not parent a child with such a serious condition.


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I went to bed that night thinking of those dark, sad, eyes and argued with God for most of the night. By the next morning I decided I couldn’t possibly make my decision based on Google alone. I got my nerve up and called our pediatrician who has been practicing for over 20 years and told him about a little girl from China who had been diagnosed with KMS. He told me to bring in her file and that we could look at it together.  

At this point Abby was 3 1/2 and had been on the shared list for well over 2 years. Her medical file was sketchy at best and she had been passed over by many families who could not get past 3 letters written in her file: KMS. When Dr. Delano read through the file he said these words to me “Gigi, in all my years I have only seen this condition once, and I’m not going to lie, it did not turn out well. BUT – here is the thing – there is no way a child who had this could have survived for 3 years without any treatment.”  He also went onto explain he could not confirm the diagnosis (nor could any MD) because her file didn’t contain ANY blood work including platelet counts. One thing was for sure though, if this child had such a condition she would be way better off in the states where she could receive treatment than wasting away in an orphanage.

Somehow by the grace of God my courage grew and I decided we would bring Abby home no matter what (although the biggest hurdle was talking my hubby into another adoption – he had no idea I was looking at the file of my child, let alone a princess with a potentially fatal disorder). Thankfully God helped me in convincing dear hubby and we have never looked back.

As the months when on and we continued working on our dossier and waiting through all the adoption milestones, I would have moments of panic. What on earth was I possibly thinking – I can’t do this, what if, what if, what if. Somehow though, the panic would subside and I was left with a steely determination of how I would ‘help’ this child live a worthwhile life no matter what. I hoped for the best but prepared for the worst researching top specialists (Boston’s Children’s, the Vascular Birthmark Center of New York, Cincinnati Children’s Hospital, just to name a few). By the time we left for China we were ready but had no idea what to expect when we got there.


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Meeting Abby for the first time on Jan 13, 2013, something was instantly obvious – this did not appear to be a child on the verge of death! Yes she had a light purple birthmark under her chin and on her chest but it did not seem to bother her at all. She was plump and pink and robust and beautiful in every way. 

She did not have any signs of a low platelet count, no bleeding gums, no bruises, no petechia. She would eat, and drink and laugh and smile. She instantly bonded with her sisters and wanted to do everything they were doing – running, jumping, skipping, giggling. There were moments in China I would hold my breath and think – this is way too good to be true! Something horrible is going to happen at any moment – she is going to fall and cut her knee and bleed out in China!

After an amazing 2 1/2 weeks we returned home from China. The next morning I went to wake Abby and noticed something was wrong! Her breathing was labored and she was unconscious. I picked her up and rushed to the emergency room where the nurse grabbed her from my arms and started calling codes. Before I knew it the emergency room was full of doctors and nurses asking me a flurry of questions. Did I know her medical background, where were her biological parents and what was their health history? if she had been exposed to any infectious diseases, if she had a history of seizures, etc? All I could do was tell them of her diagnosis from China and pray. The hours that followed were full of medical tests: Cat scans, x-rays, blood tests, urine tests, spinal tap.  

Here’s the thing – every single test came back normal! Her platelets were normal, her blood tests were normal, her ct scan was normal – praise the Lord! They were not concerned at all about the birthmark on her neck/chest. But she did have low oxygen and was slightly anemic and because she was so lethargic they admitted us to the local children’s hospital. 

After being on oxygen and sleeping through the night, she woke up happy and chipper the next morning and they released us almost immediately. The doctors never could really give a reason – just pure exhaustion and perhaps the change in altitude combined with the anemia. Who knows, but one thing they knew for sure was that her platelet counts were absolutely, beautifully normal and she could not possibly have KMS.


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About 2 weeks later we met with the head of the Vascular Malformation Clinic at our Children’s hospital. He reviewed her blood work, looked at her birthmark, and inspected every inch of her body. His diagnosis: that what remained of the original vascular malformation/tumor had regressed and what was left was purely cosmetic in nature. He went on to say that once such a tumor regresses to this point it never causes the KMS phenomenon again and there was absolutely nothing to worry about from a vascular malformation standpoint.

I later learned that Abby had been treated in China with a drug called Propranolol which is a beta blocker. The orphanage director loved Abby and sought help from what she called ‘a western doctor’. That doctor prescribed the Propranolol which at that time was cutting edge treatment which likely shrunk the tumor and saved her life. Either way, miraculously, what at first sounded like a scary diagnosis has turned out to be a complete non-issue.


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Abby is now enjoying the last few weeks of kindergarten and looking forward to 1st grade next year. She is an active, healthy child who is doing great in school and catching up to her sisters quickly. Not a day goes by that I don’t thank God for the privilege of parenting her.

— guest post by Gigi

 

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May Fundraising Family: Meet the Berrys

May 20, 2015 by nohandsbutours 0 Comments

No Hands But Ours is committed to encouraging, informing and supporting families as they pursue adoption through the special needs program in China. In an effort to be more purposeful in supporting in-process families as they stretch financially to adopt, we are now featuring one fundraising family per month. If you would like your family …Read More

find my family: Samantha

May 20, 2015 by nohandsbutours 2 Comments

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Samantha is listed with WASATCH and is diagnosed with scoliosis. Samantha was 5 years old on admission, cautious to new environment, observed her surroundings with curiosity. Under the excellent care of caregivers and patient guide of teachers, she gradually adjusted to the environment and she has become outgoing and has had good living habits. At …Read More

One Wild and Precious Life: Adopting a Child with Albinism

May 19, 2015 by nohandsbutours 3 Comments

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Our adoption story began about four years prior to our actual adoption. I was sitting at work one regular day and just had a random thought to research international adoption. This was not something we had previously discussed and wasn’t something at all on our radar screen. We had – at that time – two …Read More

I’m Ready to Adopt: Choosing an Agency (Part 3)

May 18, 2015 by nohandsbutours 0 Comments

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Today we’re back with our I’m Ready To Adopt series with the third in a mini-series by Kelly – who blogs at Mine In China – on How To Choose An Agency. You can read the first two posts here and here.   Understanding LID and Partnership Files In this post, we are going to focus on another file designation used by China, known …Read More

Urgent Medical Need: Regis

May 18, 2015 by nohandsbutours 0 Comments

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Regis, born December 2009, is a sweet boy, who was a little overwhelmed by the attention when agency staff saw him on a trip, and seemed relieved when he could go play again. Caregivers say sometimes he is quiet, and sometimes he is more talkative. He is diagnosed with thalassemia, and receives monthly transfusions. They …Read More

Post-Mother’s Day Blessings: Trusting Him in Adoption Details

May 17, 2015 by nohandsbutours 0 Comments

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Two years ago this week, I was a basket case. We were anxiously awaiting for our travel approval for China — and unfortunately… we would miss it. He would have another birthday in his orphanage — apart from us. That was this week two years ago. I did what any reasonable waiting mom would do …Read More

aging out: Averi and Richie

May 16, 2015 by nohandsbutours 0 Comments

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Averi, born in October 2001, is now 13 years old. She loves to perform and is quite gifted in singing and dancing. Averi desires to have a family of her own. Is your family missing a young performer? On a spring day in 2002, 6 month old Averi was found in a local park. After …Read More