Showing posts with label Spina Bifida. Show all posts
Showing posts with label Spina Bifida. Show all posts

Friday, November 7, 2014

Then and Now…the Difference a Year Makes!!



Around this time last year, I was madly fundraising and sharing this picture of Esty turning TEN years old…alone, in an orphanage.
Then...and now!

This morning, I had the thrill of surprising her at school with balloons, her favorite cookies, a party hat and a birthday sash! Tomorrow is her actual birthday, but we did a party in her class as a surprise!

And oh my...

WHAT. A. DIFFERENCE. 

One year.

What can be accomplished in the course of a year by a MIGHTY GOD?

He raised 100% of the funds necessary for us to adopt Esty. (Another MASSIVE thank you to every one of you who helped!!!)

He allowed us to get to her in the NICK OF TIME as she was severely ill and went septic the same week we got her out of her orphanage.

He allowed us to find good healthcare in China and provided the antibiotics necessary to save her life.

He brought us home safely, in spite of nasty winter weather.

He has cemented our family together at the heart. This has not been without struggles as older children who are adopted do struggle. But we are a family who embraces one another fully, with great thankfulness to the God who has done it.

He has provided for the hundreds of hours we have spent at doctors' offices, clinics, hospitals in every way: financially, childcare, transportation, emotional and physical strength.

He has healed Esty of some massive things that have been going wrong with her body for a long time.

Esty has become a champion at all her personal care. (This is a HUGE ONE!) 

She is no longer relinquished to the corner and sitting in a wheelchair. She is walking with AFO's (ankle-foot-orthotics) and quad canes! She is riding a bicycle! 

She can put on and take off her massive TLSO (thoracic-lumbar-sacral-orthotic) (back brace!) by herself. And she never has ONCE complained about it. She wears it 20 hours daily.

God has opened her mind to receive a new language…Esty now speaks English nearly 98% of the time. (And I constantly pray that she maintains some of her Mandarin!)

God has taught her what unconditional love feels like. He has used us in this process. It has been hard, as we are so fallen, but He has done it in spite of us.

He has given her laughter. Hearing her laugh, knowing she is safe and that her future has begun is a most amazing and rewarding thing.

And so tomorrow, we celebrate our dear gift named Esty! We can't wait!

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Thursday, July 17, 2014

Esty's Friend Branch Needs a Family



Something happened on the way to the hospital yesterday.

Esty opened up.

She had me in tears in minutes.

As soon as we dropped her sister off, she began to chatter. She had purpose. Something had been on her mind.

Up to this point, she has only answered questions I have asked in effort to learn more about her past. 

Yesterday was different. She had something to say.

"Mommy, I have a friend at my orphanage," she began in Mandarin. (We still speak in Chinese about matters of the heart as it's still easier for her.)

My ears perked up. I turned off the music.

"Tell me about your friend," I answered.

"I'm so worried about my friend, Mommy. I don't know if he is okay or not." And she began to pour out her heart. "He is in a wheelchair like me. He was my friend. So nice. But his legs cannot bend. They are stuck in a bent position. He sleeps in a ball, with his feet tucked under him. I don't know if he is sick or not, Mommy. I don't know if he has a fever. I'm worried if he doesn't get adopted like me, he will die in China. The doctors we have here are so good. The orphanage had two doctors, but they didn't do much. They didn't help me when I was so sick."

I was speechless.

She continued.

"I want him to get a family. I want him to be able to go to good doctors. I am so worried, if he stays in China he will die."

I had tears at this point.

She proceeded to tell me how he was in 2 different foster families, but both families only had a mother. 

Sweet boy. He has never had a father figure.

Oh my heart.

I asked her his name but she said, "Oh but Mommy, if I tell you his name, you won't know him."

I told her that I could ask my friend to see if she could find him. Find out if he has been adopted. Find out if he is okay.

She couldn't believe it.

She asked me how this was possible. I recounted the story about seeing HER picture posted…people were looking for her family to find her. 

And we did.

She was on the edge of her seat.

And in between doctor appointments, I emailed my dear Annie. I used Pinyin to write out the boy's name. In order to find a particular orphan, you need their Chinese name and date of birth. Esty knew he was 9, but had no idea when his birthday was. I hoped for the best.

I knew which orphanage to search in, his Chinese name, approximate age and special need...I felt hopeful!

Within 24 hours, I had an email back from dear Annie.

 SHE HAD FOUND HIM!!!

I showed Esty his picture. "That's HIM!!!! Oh Mommy, that's is really him!!! Is he okay? Does he have a fever?" 

(Interesting to hear her worry about him having a fever. This was the key symptom she presented when she had that severe kidney infection that went septic and would have died if we didn't get her proper medical treatment. She is aware. She wants the best for her friend!)

Of course I had to answer that this information did not tell us whether or not he had a fever. But it did give us his birthday and he is now 10 years old.

He is on the Shared List. 

If you haven't adopted from China that means that any agency at all can request his file and do his adoption paperwork. He is not locked in with any particular agency.

I have his file. What a precious soul.

It amazes me: his file was prepared precisely one year ago.

I have goosebumps. Do you?

As I read his file I love what I read.

"All nurturers and kids like him very much."

and

"He hopes to have his family with dad and mom."

How much more awesome to know that my Esty vouches for his delightful personality!

So friends, let's share this precious boy we are calling "Branch." Let's find his family!!!

If you want to more about Branch, please contact me. He has the same special need as Esty: spina bifida with lower limb paralysis. He also appears to have club feet. What a treasure!!!

Someone PLEASE go get Branch and we will meet up with you!! Esty wants to know that her friend can live a better life, have a daddy and not die in China unloved!!

How's that for a cause?? :)

Love my dear daughter! Who better to advocate for the orphan than the former orphan who knows both sides of the coin?

Let's get Branch a family.


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Thursday, April 24, 2014

A Front Row Seat to Miracles (Esty's Health Progress)




I am SO EXCITED to report about all God has done in Esty's physical health!!

I've waited for so long…hoping that I'd have a good report but everything was always SO BLATANTLY FULL OF BAD NEWS.

As you may remember, when we picked her up from the orphanage back in January, she was sick.

Very sick.

So sick she was within 1-2 days of dying.


Seriously.

But God orchestrated all our paperwork, clearances, fundraising and plane tickets so we were there on the Monday before she died. 

And God directed our steps all the way to the International clinic where she was given the medical attention that put a halt to the kidney infection that had gone into her blood.

And then, we came home to America.

And we began investigating all her renal health issues.


We did endless tests. We were at the hospital weekly.


And no matter what test was run, they all had bad news: she was in a desperate state of health. 

Stopping the blood infection in China was not enough.


When we got the results back…it was hard to not cry.

For a solid 15 minutes, the pediatric urologist showed me test after test and each time would say, "Well, her bladder should look like a round ball, but this is how her bladder looks," and on and on through every test. 

There was no good news. 

Nothing. 

I was just simply astonished.

And then, we went to the nephrologist. 

He too reported difficult news. "She is a patient who is on the path to total dialysis and/or kidney transplant."

How does a mom take it all in????

I couldn't blog. 

It was just too much.

Naturally, we began some intervention. 

Fast forward 6 weeks.

Today, we had another serious test to see how the pressures are being managed in her bladder. You see, she already had Stage 4 reflux into BOTH kidneys. This is often solved by immediate surgery.
Our team wanted to try medication and daily self catheterizing. We've done that faithfully for the past few months.

Today, the test began and our urologist immediately exclaimed, "Oh my! Look at that bladder! It almost looks normal!"

:)

And fast forward to the end…she has NO SIGNS OF REFLUX INTO HER KIDNEYS!!!! The meds and cathing have WORKED!!!!

I was dancing around the operating room in my funny jumpsuit and hairnet! 

GOOD NEWS FOR THE FIRST TIME!!!!

Now the deal is, she must stay on this plan the rest of her life. Monitoring her progress with further testing will always be part of her life. We cannot reverse the damage already done to her kidneys by years of neglect…but…

The future of dialysis/transplant is now DECADES off into the future, no longer an imminent concern!!!!

Are you kidding me?!?!?!?!

CELEBRATE!!!!!!!!!!!!!!!!!!!!!!!

And Esty? Well, she was busy playing an iPad game where she applies make up to a mermaid. She did look up and wonder at my silly dance party but then just kinda shrugged her shoulders and went back to choosing a nice party dress.

Someday I will tell her this story.

A story of a God who sees her. Who saw her broken and needy. Of a God who cared for her every step of the way, even when she felt alone. The story of a woman across the world who heard Him speak of a waiting orphan in great need. The story of how He lovingly matched their hearts. The story of how He rescued her just in the nick of time and provided all the right medical care at the perfect moment. The story of how she would be obedient to take her medicine and learn to self catheterize and He would work more miracles to extend her life. The story of how He wanted her named Esther…because He wanted her in place for the special work He has for her to do.

I will tell her this story.

She will know how the God of the Universe loves her. And how valued she is. And I pray that she will embrace Him wholeheartedly and live out the marvelous plan He has for her life.

What an honor it is to have a front row seat to watch this miracle unfold!!!



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Wednesday, January 22, 2014

Esty's Emergency

I had this entire post typed out...and it vanished. Gone.

POOF!



So, it went something like this:

It's been a while since I've posted...because we've been consumed with Esty's medical emergency.

If you don't follow me on Facebook or Instagram, then you may not know, but it's been pretty intense around here.

Sweet girl came to us sick. But we didn't know it.

She had plenty of energy in the beginning...and ran fevers in the afternoon.

We thought it was from the change of everything. We gave her Tylenol and continued to deal with our incredible learning curve with Spina Bifiida and incontinence.

Soon, it dawned on us that perhaps something isn't right. 

We got our hands on some Bactrim and began treating what we believed to be a UTI. 

Friday when we flew from Beijing to Guangzhou, she was silent. She refused to eat. Wouldn't drink. Wouldn't speak when spoken to. No more smiles. 

We had packed up everything she knew to this point and were leaving her place of birth. We thought for sure this was simply her emotional response to her mega life changes. 

But then the fever. And she vomited.

Saturday morning we went to the consulate medical appointment. We explained to the doctor what we had been observing, and showed the medicine we had given her. She immediately advised we take her to the doctor and begin intravenous antibiotics. 

My heart flipped.

We were pushed to the head of the lines to see the various doctors and whisked out of the consulate building and taken to the International hospital. 

It was a Saturday, but we were so graciously seen immediately by a very kind doctor who had his training in the States. He ordered a series of tests and after an examination he told us she had a very serious kidney infection and needed immediate IV treatment to stop any kidney damage.

Again, within minutes they had us in a private room and began the infusion of medicine.

So for the next 5 days we would daily sit in that room, awaiting results of blood and urine tests...praying that maybe NOW she was better.

You see, we almost lost our Esty.

The doctor told me after we had her going on the IV drip just HOW serious her infection was.

"This is VERY serious. It is fatal in a few days."

{gasp!}

Yes, she had gone septic.

And I saw her Adopt Shoppe necklace, "She knew she was here for such a time as this..." What IF we hadn't gotten our travel approval when we did? What IF we weren't here for her now?

This kidney infection had been in the works for a while. Oh. I cannot even go there.

So graciously the doctor allowed us to take her home to our hotel rather than admit her to the local Chinese hospital. "You'll be more comfortable there, I think." 

So we returned daily for more blood draws, more urine tests, more IV drips. 

And she took it like a champion. Never a tear. Never a side glance of fear. Handing over her arm for more.

Incredible. Every doctor and nurse we met in our time commented on what an incredible child she is!!

Finally on the 3rd day, when we got news that some numbers actually got worse, I saw that strong bottom lip quiver. And her arm went up over her face.

By the 5th attempt to get the IV started I actually heard an audible whimper. 

Poor girl.

So so so strong.

And so at the end of herself. And then her eyes began to swell shut. Craziness.

Day 4 we got the news that she had drank sufficient water that she could just have a shot in the hip rather than the 3 hour IV drip. I have never seen a child so happy to get an injection before! And this one was a DOOZY...but of course, she took it without even a wince. 

And finally on day 5 we got our "walking papers" and were able to leave with only oral medicine!!!

What happiness!!!!



I have wondered HOW MUCH to say...and have decided that this is important for others to know that:
1) God is ALWAYS faithful, carrying us when we are afraid, in scary circumstances, a world away from home and that He rescues;
2) Spina bifida kids have complications...but nothing is too much when God has called you to them!
3) God has used this to build the bond between us...she had begun to favor Brian over me and almost push me away...(it's a common way of grieving the loss of a female caregiver) but this has cemented our hearts together as I never left her side and handled some pretty intense moments together. 

Other details will not be shared publicly but please know that if you are considering the adoption of one of these precious SB kids, I am always available to talk, listen, answer questions and encourage you in your journey. I long to hear that because of our story other children are finding families!!


I am loading this from Hong Kong...so we have her passport and US visa and are on our way to becoming a family of nine! She will become a US citizen when we land in America!!

Tuesday, January 14, 2014

Day 2 with Esty

Yesterday we entered day 2. With older child adoption, you have no way to know what's going on behind those eyes...but she continues to smile, respond when I speak to her in Mandarin and go with the flow.

We had a wonderful breakfast in our hotel together. She chose very Chinese things to eat: corn on the cob, tomatoes, cucumbers, a bean steamed bun and yogurt. :)

This was the day for touring around the city. What a fun fun time we had!

We bundled up for a cold day and were so blessed to be taken to Tiananmen Square and the Forbidden City with a fabulous guide, David. He learned English from an American and was so incredibly kind to our kids. He not only explained things to us in our language, but he took the time and effort to explain them all over again to Esty in Mandarin.
It was truly incredible to be at such a momentous place in history. When we walked onto the square, I got goosebumps. Seeing the army just made it all the more fabulous.

Take a look at this enormous image of Mao...it's almost 2 stories high!

It has been so fun to watch Oliver and Esty begin to bond. He enjoys pushing her in her wheelchair. She enjoys giggling.


We then entered the Forbidden City and learned TONS about emperors and how things rolled here for 3,000 years before Mao took over. It was sad to realize that Esty had not learned the order of dynasties as any typical Chinese student would...when you don't get to go to school, no one teaches you.

sigh.


This place as 9,999 rooms! If you chose to sleep in one room every night starting when you were born, it would take you 27 years to do it! There are some fascinating details about why 9's are important in China. 


The buildings went on and on and on. Oliver got overly cold so we rushed through the end of the tour.

Many rooms still had the thrones and beds and items from when emperors lived here. Esty couldn't see anything from her chair, so Daddy carried her around! She liked that!


Several times in history a VERY young emperor would come into power. As in like 3 years old! Seeing as a 3 year old would probably not make wise choices for a country, his reign was actually run by his mother. "Dragon Lady" is how she is referred to and it was her "Summer Palace" that we toured on Sunday before we got Esty. Her summer home was truly astounding. I won't go into all the details, but if I did...you'd be blown away. I do believe these emperors would NOT be the kind of people you'd like to share a cup of tea with! YIKES! But seriously, if you ever get a chance to see China, be sure and soak up some of this incredible culture! ESPECIALLY if you are adopting a Chinese child...you want them to know where they came from and their fabulously rich history!



After seeing these two sites, we went for some PULLED NOODLES!!!! (Oh, how we have missed them!)

And...after much coercing...Oliver finally tried some! :)

Then we went to Hutown. This is basically 200-300 year old homes near the center of the city. It's prime property because the meridian passes through it and this adds to its value. What's so fun is that to see it, you ride in rickshaws!


Probably the most fun we had was inside of a man's home...he had these two birds (forgive me, i forget their type) who could speak perfectly clear Mandarin in a man's voice. They made us laugh so hard! "Ni hao!" "Ni chi de ma?" "Ni hao ma?" and "Bye bye!" were all in their vocabulary. I can guarantee you that Esty and Oliver had never met a bird like them!


Aren't they sweet...bonding like this!

We've had plenty of time to just hang out together in our room as well. These two have done puzzles, taught each other how to make origami boats (Esty) and paper airplanes (Oliver).

Esty can crawl around like there's no tomorrow and she was hanging out in the sunshine in the window when behold, I appeared with the camera. She enjoyed making some fun faces. While she isn't saying much yet, her gigles and now her silly faces are beginning to show her fun personality!!

(And OH MY! I want to share: Esty is such a girlie girl! I was putting on my earrings for the day and she looked through my jewelry bag. "Give me one," she said. I was THRILLED to have the Adopt Shoppe necklace that has the verse from Esther 4:14 on it...which is why we have named her Esther! I gave it to her and she loved it! You can see she wore it all day long.)





Life is pretty good. 

We so appreciate all your prayers and ask for you to continue. Yesterday I explained that today (Wednesday) we will finalize her adoption. I asked if she wanted to do that. "Yes," she replied. "Do you want to go to America?" Yes again. I told her every Friday night for dinner I make pizza, did she still want to go to America? No answer. ;) (She won't touch pizza with a 10 foot pole!)

We have some prayer needs for her physical health too...would you please lift these up for us?

Thank you and blessings!!


Monday, January 13, 2014

We've Got Esty!!!!

It's 4 am.

I'm in sweatpants with dark circles under my eyes, sitting in the hotel lobby so I can have access to the internet.

Workers are sculpting away at Chinese New Year decorations.

And my little one sleeps upstairs in our room.

How incredible.

Yesterday our day began early, at 6:30 am we met our guide down here to head over to her orphanage.

After a 30 min drive on easy roads, we arrived in the dark.

Our hearts were full of anticipation.

I could see a little ponytailed girl silhouetted in a 4th floor window looking down. What was she thinking? Did she know Lang Han Han was getting adopted today?

We were taken into a large conference room and the heat was turned up.

We spent a good hour signing paperwork and attempting to calm our nerves.

"They are going to bring her now," they said.

We waited for what felt like the entire 10 months of this adoption for her to come through those doors.

Oliver was ready with the video, Brian with the camera.

Then, the doors finally opened.

And in rolled our Esty.

She had a pink knit hat on and desperately reminded me of a little grandmother.

I went to her and said just what I did in a dream I'd had months before, "Ni hao, wo shi mama." ("Hello, I am your mother.")

She smiled.

I took her hands. They were soft and warm. We grinned at each other. I probably said more silly stuff to her in Chinese but I can't remember now.

She then looked for her Daddy. "This is your Daddy, Han Han," I said. 

And then Oliver came over.

They shook hands and a kind smile filled her face.

Immediately then the orphanage director who was so very kind and filled with smiles and kindness herself, began presenting Esty with gifts.

"She has taken the tea service class, and done well," she said. "We are giving her these gifts so she can go to America and open a tea house. Tea service is very lucrative for someone with her differences."

I didn't know how to break it to them that she's going to be a doctor. ;)

The gifts came. And came. And came. (We are going to need an extra suitcase for her tea business!!)

We asked our guide once we left if this is common for an orphanage to lay gifts before a child like this on Gotcha day. "Not too popular," she said. I can't imagine they could do this often!!

So, I surmised that our sweet Esty is WELL LOVED.

Multiple nannies described her as "a big girl" before we met, which confused me because her measurements were so small...but they clarified for me, "She has such a big heart."

Oh yes. My Esty.

After some pictures, we loaded into the van. I held Esty on my lap just in awe that we are together! 

She began calling out ot the orphange women, "Bye bye! Bye bye!" (in English!) and waving and grinning. She did not seem at all to be nervous about leaving with us.

{I just have to pause and say what you are probably thinking too---how is this een possible? How can a 10 year old orphan be so pleasant, kind and wave bye bye to her life and snuggle down into my lap? I  have no answer for you. Only that this is because of prayer.}

We began a long drive then through Beijing. Stop and go. Stop and go. Horns honking. Smog rising. 

We were began by looking through the photo album we'd sent and working on all her siblings' names. But then I began to feel car sick, so I stopped.

She went very quiet and I noticed sweat forming on the bridge of her nose. Then, she began looking more and more white.

"Wo yao tu!" (this is a sentence that caused much alarm as we all began dumping tea service items out of a bag so we didn't have vomit all over the van!)

Eventually, she did. Poor thing. But I held her close, rubbed her back, cleaned her up.

Oh how many times has she had to do that without a mother to care for her?

Eventually we made it to the photo studio. We took a picture of Brian, me and Han Han for the adoption registry.

Then onto the Civil Affairs office where we were quite late for our appointment.

This took another hour perhaps, all the while she was happy to just sit with us and wait. Oliver was a rock star during all of this too. I have even heard him begin to repeat Mandarin phrases and put things together and say, "Oh I know how to say __________!" It's so fun to see! Later in the day he spoke to a father and child, "Ni hao!" I was literally beaming.

We answered the woman's questions for the official paperwork. Why had we come to China  to adopt? Would we promise to never hurt or abandon her? Did we fully understand the things wrong with her physical condition?

We signed our names with black ink, sealing it all with a red fingerprint atop our signatures. (Americans should really start doing this. It's so cool.)

Then, it was Esty's turn. I didn't realize, but after age 10, the child being adopted needs to write a sentence in characters that says, "I want to be adopted." It took her about 3 full minutes to copy our guide's example sentence. (Esty has never been to school because China is not wheelchair accessible.)

Then came her name in characters and her own little red fingerprint.

She was sitting in her new daddy's lap and looked up at me with a smile that melted me. 

She wants this. How totally incredible.

Then it was time for some lunch. Our guide asks her what she would like to eat. She can have ANYTHING at all...and what does she ask for????

KFC. Seriously.

I was dumbfounded.

We wisely decided to return to the hotel and have it delivered to avoid more motion sickness. Brian and I had baozis off the street while Esty and Olly sat there dipping their nuggets into sauce. The irony was not lost on me.

The rest of the day was spent getting to know one another. We went for a long walk, bought her a pair of boots and eventually snuggled her and endured multiple episodes of Xiao Lan (a popular cartoon about a sheep.)


She and Oliver played iPad games together.


After noodles and a bath, we were snuggling down in the bed covers and I began to read to her from the Jesus Storybook Bible.

{Get this Bible for your kids. So amazing.}

I had an arm around her and read in English. I'd already asked her if she knew who Jesus was or God and she said "Wo bu zhi dao," (I don't know.)

{wow.}

I started at the beginning. Before the story of creation, the book gives an overview of what the Bible is about.

As I read the words to her about being loved by a God who rescues, I was in awe. Then I read the words aloud, "The Bible is most of all a Story. A story about a young Hero who leaves his far country to win back His lost treasure."

And I lost it.

What was I doing but just what Jesus has done for me? I left my own far away country and was now snuggled down with a former orphan who was so precious to Jesus that He sent me to be His hands and feet to her.

What a priviledge.

What an honor.

What pressure to get it right!! {But there is grace. Abundant grace. We who parent know we do NOT get it right, but forgiveness and love and new starts are the language we speak.}

We held her in our arms and prayed for her. We nestled her down in the white down comforter and made sure she had all she needed. 

She immediately slept.

And so, was day one with our Esty.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Special notes: 

She was at one point running a fever of 102. Please pray for her. I gave her Tylenol and checked on her during the night and it seems to be gone, but we want to obviously be careful.

Oliver was running and pushing her in the wheelchair/stroller and she was giggling for the first time. It was a glorious sound!!

Her physical condition is both encouraging and alarming to me at the same time. Her back is very contorted, which is not noticeable as long as she is seated. I had her up on her legs and I am guessing she has a very serious case of scoliosis. The good news is that she has a LOT of movement in her legs. She can cross and uncross them while seated! She has feeling down to both knees. Below her knees her legs are icy cold and like rubber. She has no strength in her ankles whatsoever and cannot stand on her feet in the usual way. I fully believe she will walk, but there will be AFO's, arm crutches and possible back surgery in her future. Please pray for all of this that is coming. By the way, I asked her if she'd like to walk and her face lit up and she nodded! 

Once again, I am saying THANK YOU to everyone who partnered with us to pay the crazy costs of adoption. We did not have $30,000 extra sitting around, (especially on the heels of Toby's adoption!) but through fundraising, love gifts and grants, we are here and she is ours. Her future is open wide before her. YOU did this. Please know that we are so deeply grateful for the chance to become her parents and love her to Jesus because YOU helped make this possible.



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