Count of Chicks for Children

God's Plan For Us

This is our journey - God's incredible plan for our lives. When we followed the moving of the Holy Spirit, He opened the windows of Heaven and poured out upon us blessings we never dreamed of! Indescribable joy!

" For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Tuesday, December 4, 2012

Family photo to go with Dossier to China

Lili's new haircut. This photo will be sent to China with the dossier for our two new daughters! They can't home soon enough for us!!!

Wednesday, October 17, 2012

Update from the World's Worst Poster ;-)

It has been a while since the blog was updated. Between recovering from my back surgeries and Enya’s second lip repair it has been a busy summer.  (Oh, and did I mention we're in the midst of paperwork to bring home two more daughters!!!! More about that to follow) We were able to take the girls to the beach (my parents live there), and show them the ocean for the first time. They were so excited and awed by it all. To see their faces and watch them dig their toes in the sand and run into the waves, was such a joy for us! We had them take swim lessons before we went (they were all afraid of the water), and by the time we came back home, they were all swimming! Their pride at accomplishing this was a wonderful thing. We were also able to take them to the lake with Virgil’s family. They enjoy being around extended family so much, and had a blast catching fish with their older brother, Zeb.

I thought I’d update you on each one individually so you might have a snapshot of who they are and who they are becoming:

Xiaoyun – It has been an amazing transformation with Xiaoyun. In the year she has been home, her confidence level has soared. She has went from being considered unwanted (in China), to almost celebrity status here. She’s been the ‘featured woman’ in our local newspaper, been interviewed live at our local radio station, has spoken to a group of middle school girls at a youth camp, and has raised more than $41,000 for the kids living in the slums of India (so far that has provided around 7500 families with a pair of chickens!!!!!). She now goes with Virgil and helps him with community programs that he might have. Between advocating for orphans, raising money for India, and her miracle surgeries for her back, she is very well known around town. She held a yard sale, and between donations and sales, she raised $1000 toward more chickens, with enough left over to help a little girl from her province be placed in foster care for a year. (We had many people to donate items / money/ and their time. The girls also got rid of many toys – some they really loved – because they knew it would help other boys and girls.)  Xiaoyun’s puppy, Sammi, has been the best physical therapy she could ever have. She went from being pretty sedentary (healing from surgery and with the brace on) to running, playing, and taking care of Sammi. Her brace came off two days after she got Sammi, so the timing was perfect. She has so much fun with the dog and has taught her quite a few tricks.

Elli – now home two years- is our little scientist. She is so inquisitive, loves learning new things, and has her life planned out. She plans on being a doctor (and going to help older orphans who need medical care), a seamstress (so she can sew clothes for orphans), and a mama. She wants to get married when she’s 25, have 5 years of ‘just time with her husband’ ( her own words!), and then she wants to adopt 2 kids and give birth to 2 kids. I’ve never heard a child plan their life like she does. Her memory is incredible and she really thinks about the things she hears and sees. She plays doctor all the time, and it works out well because LiLi wants to be a nurse. Elli is still a bit introverted, though she has decided she wants to try dance again this year (she skipped last year). Her hip dysplasia is doing better. For a while we were afraid she would require a very painful hip surgery, but when she went back in May it showed her bone in the hip socket was beginning to turn down, so the doctor feels no surgery will be needed. Elli loves to watch science shows, particular those with animals. She has really taken off with her reading, and it is so fun to listen to her read a book.

I have never met a more compassionate child than LiLi. She is also so incredibly thoughtful. For example, she’ll come in the bathroom and watch me get ready in the morning. The other day, when I went in there, my toothbrush was sitting out – with toothpaste already on it, my contact case and cleaner, and the hair brush was laid out. She had also organized all the drawers in the bathroom.  She looks for ways to help – without being asked. She prays daily for her ‘little brothers and sisters’ still in the orphanage. When we inquired to see if there were any girls from her orphanage that were on the Waiting Children’s List, they said no. When we told LiLi this, she replied ‘That is so sad’ and it bothered her quite a bit. Her plan is to be a policewoman or a nurse, and when she is older she wants to bring all her ‘brothers and sisters’ and her ayi (nanny who cared for her since she was a baby) here to live with her. She is an early bird who wakes up with a smile and goes to sleep with one. She told me the other day she wanted her lip to look like mine (as well as her eye). It broke my heart. I tried to explain we are all created differently and she is beautiful just as she is, but even more than that, her heart is beautiful (which is what truly matters). I did tell her she would be having more surgery next year, and then again in another two or three years, and she was glad to hear that.

Elli and Enya play so well together and are inseparable. They can play for hours in their bedroom, and I love hearing them pretending with their baby dolls and Polly pockets. How quiet and predictable our life would be without a house full of wonderful girls!!! We are truly blessed!

Tuesday, May 15, 2012

Happy 15th Brithday Xiaoyun!

Today we celebrated Xiaoyun's 15th birthday. Yesterday marked marked one year home. We have so much to be thankful for. Xiaoyun had a wonderful day, with her big gift being a little dog from the animal shelter. She's been asking for one since the day after I first hugged her. However, with all the surgeries we knew were coming up (and the fact Enya was scared to death of dogs at first), we kept putting it off. I'd have loved to have video taped her reaction when Virgil told her last night that she was going to be able to get the dog. She was laughing and crying at the same time. I'll post pics tomorrow, along with doctor's updates. So thankful also for family and friends that celebrate with us each milestone in our kids lives!!!

Friday, May 4, 2012

Happy 2nd Gotcha Day Elli!!!!

Today we celebrate Elli's 2nd Forever Day! If you are counting, that means we adopted all three girls in less than a year. This is Elli's latest photo. As you can see, she is quite proud that she lost her front tooth. Since she came home, she had grown over 7 inches. She is a beautiful girl with a beautiful heart. She is such an introvert, except when she is around LiLi, who brings out her humorous side. Her intelligence continuously amazes me (sounds like a mama doesn't it ;-)   ). She is the slowest girl when doing her schoolwork and reminds me of a sloth when it is time to get ready to go anywhere LOL! Her hugs are are worth a million dollars! We love you sweetheart and are so thankful for you!!!!

Saturday, April 28, 2012

Happy Gotcha Day Xiaoyun!

Today we celebrate Xiaoyun's 1st Gotcha Day!What a precious and incredible year it has been. We've seen many miracles throughout this year and received the greatest gift a parent can get - Xiaoyun's salvation. If you have followed the blog much at all, you can see what a heart she has for those who are hurting, for those who have no one to show them love. She is truly a blessing! I am so thankful for the foster parents who loved her and raised her with a compassionate heart. I'm thankful for that night, a year ago, when I was able to assure them she would be loved and cared for, and to sit and hold her foster mother and shed tears for all they were losing.

We are praising God for our wonderful daughter!

Thursday, April 26, 2012

 Happy Gotcha Day LiLi!!!!
A year ago today I laid eyes on the most energetic, empathetic, and friendliest child I’ve ever met. She gave me a run for the money while in China (and for a while after we got home). I prayed I’d have enough energy to keep up with her ;-) . This last year has been incredible! She is such a joy. She wakes up with a smile on her face, and goes to bed the same way. Every day is an adventure to her and meant to be lived to the fullest. She is generous and so concerned with the feelings of others. She is grateful for everything you give her, and says ‘Bye and I love you!’ every time I hang up the phone (though she has no idea who I’m talking to!) I am so thankful God chose us to be her parents! She is truly a treasure!
 LiLi, you are so very loved!!

Wednesday, April 25, 2012

My Real Mama

Tonight after prayers, I went back into the girl's room to take Xiaoyun a heating pad. Once I got it adjusted, she put her arms around me, pulled me down to whisper in my ear, and started telling me what she was thankful for - me taking care of her, bringing her the heating pad, homeschooling her, playing with her family, sitting outside on the deck, going down to the country last fall to meet her baba's extended family (some of which I'd never met either), the visit Easter weekend we had with Zak, Mandy and Zeza, Zeb and Dana- a precious weekend where we all were together for 2 days (Zak, Mandy, and Zeza live in Minnesota), and  thankful she had a baba and a mama.

And then she said the most precious of things. Words that will forever be etched on my heart. 

"I've wondered about my real mama many times, and now I know my real mama is you. I will love you forever and ever and am so happy you are my mama."

What a gift to hear those words!

I am making one more plea for Naomi. The time is short.
Naomi may never be able to whisper those words in her mama's ear. She may never feel the strong arms of a baba who loves and protects her. She may never play outside with brothers and sisters who share the closest of bonds - a family. She may. however, continue to have problems breathing, and as she ages, her lungs will become even more compressed. Eventually her heart wall will start to thicken because of that lack of oxygen. One day she may go into cardiac arrest, having never known the love of a family, Nor had the surgery she so desperately needs. I realize older children adoption is harder, and that there will be a time commitment for the surgeries she will need. But still, Xiaoyun and I pray each night for a miracle for Naomi. Xiaoyun has broke down sobbing for Naomi and what she doesn't have and how difficult her life will be.
So today. will you ask God if she is meant to be your daughter - your  'real daughter'?

Wednesday, March 21, 2012

Xiaoyun made our local newspaper!!!

Xiaoyun was featured as today's 'Wednesday's Woman' in our local newspaper. Please click on link below to read article and watch a short video. Thanks again for all the wonderful donations!!!!

Tuesday, March 20, 2012

From Xiaoyun

Thank you for the chickens! I am happy that the kids have food to eat. You all have a good heart! Thank you so much!!! Love, Xiaoyun

Monday, March 19, 2012

Chicks for Children - Gospel for Asia

Chicks for Children - Gospel for Asia

Please help Xiaoyun provide ONE MILLION CHICKENS for girls and boys living in the slums of India! Click on above link to donate and to see how close we are to reaching her goal! Thank you!!!!

Thursday, March 15, 2012

10 More chickens!!!

It is incredible to watch this number climb and to know that peoples lives are being changed by the kindness of strangers they may never meet this side of Heaven!!!

Monday, March 12, 2012

Update on Chicks for Children

Xiaoyun has updates on her chickens: she's gotten donations for 18 pairs of chickens! That's 13 families who will now have a source of food and eventually a little extra income!!!! Yes, I realize her goal is 1 million chickens, but this is a great start, and for those families who will receive these chickens, it may mean that they won't have to watch their children go to bed hungry another day.
Xiaoyun also had an interview with a newspaper reporter in our town, who heard about her desire to help the children of India. We're praying this will bring more attention to those who need help.
Thank you Deb, Maureen, Lynn and Eric, Zeb and Dana, and Zak, Mandy and Zeza, and Emily for your donations!!!!!

Wednesday, March 7, 2012

Xiaoyun's 1,000,000 Chicks for Children

The day before Xiaoyun went into the hospital for her surgeries, we had to go up to the hospital for x-rays, etc. Since it takes an hour to get there, and Xiaoyun and I went up alone, we had a lot of time to talk. The subject got around to what Xiaoyun wanted to do when she grew up. She told me she wanted to own her own translation business, and eventually make enough money to go back and visit China, send money to the kids in the orphanages, and buy chickens for the children in India. The reason why she wanted to do the first two things is probably obvious, but the last desire came about because a friend had been explaining to her how many children live in the slums in India. These children belong to the lower 'caste' of people, and unless the cycle is broken, they will never get out of the slums in which they live. They are considered 'untouchable.' They and their family (if they have one) live in conditions we cannot begin to imagine. There is an organization - Gospel for Asia- that is trying to break that cycle, and help these children through a program called Bridge of Hope. One aspect of this program provides livestock for the families living in the slums, so they have not only food, but also an income from selling any excess that is produced.
After Xiaoyun talked about it that day, it wasn't mentioned again until shortly before we came home from our month-long hospital stay. While she was in the hospital, everytime one of the hospital staff came into the room they would always ask the same thing - "Is there anything you want?" Xiaoyun would always answer, "A million dollars." We finally asked her what she'd do with a million dollars and she promptly replied "I'd buy a million chickens."
Xiaoyun wants to raise enough money to send one MILLION CHICKENS to India for the children who are starving, and struggling to survive in a world that tells them they are less than nothing. Initially, when she told me she wanted to provide a million chickens, I was doubtful of even coming close to that goal. After thinking about it a while, however, I realized that was just my lack of faith. If God can orchestrate a little girl being adopted days before she was no longer eligible to be adopted, and then allow her to have a life saving surgery less than nine months later, then what is a million chickens?
It can be done and we are asking for your help. We'd love for you to consider donating $11 to Gospel for Asia. Eleven dollars will provide one hen and one rooster to a family. According to their website, one pair of chickens will produce up to 40 dozen eggs a year. Gospel for Asia  (GFA) is a charter member of the Evangelical Council for Financial Accountability (ECFA) and 100% of what is donated goes to buying the chickens - none goes for administration cost, etc. Below is the link to their website so you can check it out for yourself, and if you feel so led, to make a donation. If you do purchase a rooster and hen, would you please let us know? We'd love to keep a count of those chickens! Thank you!!!!

direct link to donate:

link to Gospel For Asia's website:

Tuesday, March 6, 2012

LiLi's Birthday

Today we celebrate Enya (LiLi's) 8th birthday - her first birthday with a family. We had family over on Sunday for a party for her and she loved it (so did everyone else)! She is such a joy to be around. Her enthusiasm and love of life is contagious and you can't help but smile when you're around her. Not once did she have to be reminded to say thank you, and her hugs were freely given to all who were here. She got excited about everything she got - especially the cards (since Elli has been home longer and has had two birthdays home already, she has quite a few more cards than LiLi and LiLi knows it!). She is truly a special blessing to us all. She is loyal, funny, playful, energetic, compassionate, and spreads joy to all who are around her.
I looked back at our referral paperwork today, and thought how difficult it must have been for her biological mother to lay her down and walk away. Since Enya had a bilateral cleft lip/ palate and ptosis of right eye, I think her mother felt she had no choice but to hope that she'd get the care she needed, if she was left in a public place. So many people in China do not have medical insurance, and are left without many options. Many cleft babies die because they are unable to eat. I'm so thankful that Enya was given the life saving surgery she needed while at the orphanage, and that she was loved by her Ayi (nanny)- the same Ayi that held her in her arms when just a newborn and slowly fed her a bottle and then food (though I know it took much more time than other babies because of the cleft) and then handed into my arms on our Gotcha day. I'm so glad I was able to meet her and hug her and thank her.
I do want to say a note of encouragement to those who are contemplating or who are in the process of adoption - LiLi's referral picture was old - made when she was two years old (she was 6 at time of referral), and her face was swollen still from her cleft repair surgery. Photos can be misleading, and many people may miss a treasure if they only go by one photo.

Happy birthday sweet LiLi - you are truly a SPECIAL GIFT FROM GOD!!!!!

Tuesday, February 28, 2012

Update on Xiaoyun/ 47 years of blessings

Before I begin to ramble ;-)  - Xiaoyun is doing very well. She is off the heavy duty pain meds, though she still needs pain medicine daily and muscle relaxers occasionally. She caused me and Virgil to yell 'Xiaoyun!" in unison, last night. We were standing in the same room she was laying in, but not in her line of vision. She says " Hey look at me!" We both turned and yelled because she had twisted around and was propping herself up on her elbows looking at us. Scared us both! She can't even sit up yet without the brace, much less twisting her neck around and then her body. She took us by surprise, but I think our reaction caught her even more by surprise ;-) !!!!! I explained to her (again) how delicate those vertebrae are right now, and the concern that those hooks will pull away from the vertebrae (which would be very ugly indeed!). She knew she wasn't supposed to sit up without the brace, but I never thought to tell her not to contort her body :-) . She did go and sit outside for a while yesterday and soaked up some sunshine, which was good for her. I told Virgil the other day how incredible it is that she hasn't whined or complained about being confined to the couch/ bed or the brace. She continues to amaze me!

Now to the rambling:
Today I celebrate 47 years on this earth. When I look at my life, I can't help but think of what King David said : " Who am I, O Lord God? And what is my house, that you have brought me this far?" (2 Samuel 7:18). By God's grace, I listened to two little pig-tailed girls laughing and chattering non-stop in the back yard all afternoon yesterday, heard Xiaoyun whispering in the other room to Elli and LiLi to 'make Mama her birthday cards", received a phone call from my 25 yr old son, Zak, who was calling to say hi and let my beautiful 2 yr old granddaughter say " I love you Nannie! (her version of nana), sung Happy Birthday to You! with my 84 yr old grandmother, who's birthday is 3 days apart from mine, enjoyed a conversation with  my 19 yr old, who still enjoys being home and being around family, and at around 3 am heard the love of my life sing Happy Birthday to me. I was able to talk with my mom for a while this morning, received a beautiful bouquet of flowers from Zak, Mandy and Zeza, the girls made me an awesome cake, Virgil picked up supper, and Zeb and Dana gave me a sweet card and gifts.Throughout the day I have visited with family, was given a wonderful video my niece made with pics of the family, and had phone calls from family and friends both near and far telling me they love me and happy birthday. Truly I am BLESSED. I've said before, my desire in life was to be a wife and mother, and God has granted me my heart's desire, and He's done it far beyond my wildest imagination!  What more could anyone ask for on their birthday?

Wednesday, February 15, 2012


I've been asked to advocate for another sweet girl who is soon to age out. Naomi turns 14 on July 18, so her paperwork needs to get started immediately. There is still plenty of time to get it completed. If you are already LID for another child, then the process would be even easier (this was what we did - took 10 weeks, but I know that another lady got the paperwork accomplished in 1 month - they will push that paperwork through!). There are many similarities between Xiaoyun and Naomi. Both have severe scoliosis, though at this point, I'm not sure of the curvature of Naomi's, both dangerously close to never having a family of their own, both lived in a foster home (as of the last update I have on Naomi), and it appears that perhaps Naomi's lungs (or perhaps heart?) might be compromised. Her file says she can't do a lot of exercise, and gets out of breath - which was Xiaoyun's case. The difference is that Xiaoyun now - only a year after we began- has already had her surgeries and lives with her forever family. Naomi's file says she loves to play with the neighbor's children and loves music. She can take care of her physical needs. Please consider whether this child might be the daughter you didn't even realize was waiting on you!! I have more info on Naomi - please send a note with your email address (I won't post it). If she isn't to be your daughter, will you please join me in praying for both Naomi and Makenna (as well as Tommy and Dawn - the children on the right side of my blog), that they will find their forever families before it is too late? Thank you!!!!

BTW - Xiaoyun has said she'd be glad to write Naomi for you (translate your letter or write one herself), to reassure her about being adopted.

Tuesday, February 14, 2012

Happy Valentine's Day!!!

Three beauties!!!!

These are pics made today. As you can see, Xiaoyun is doing very well. She went back to the surgeon today. The drive was a little rough - she hasn't been in the car except for a few minutes, and that hour drive made her hurt, which in turn made her throw up :-(
The x-rays looked good, though the surgeon is still concerned that the hook at T-1 or T-5 could pull out (during the last surgery when they inserted the hooks and rods the T-3 crumbled). Because of that, he wants her to wait another month before even sitting up without the brace on. She is now able to lay on both sides, which shows how much her pain has decreased, and we're no longer getting up through the night to give her medicine (YEAH!). The brace was adjusted and cut down some yesterday, and makes for a much better fit now.

Sunday, February 12, 2012

Little Tre

A couple of weeks ago I mentioned a little guy in PICU -Tre. We met Tre (4 yrs old) and his mother after Xiaoyun's last surgery while we were in there for a few days. They had been in PICU for 4 months at that time. Waiting for a lung transplant. The last time I saw Tre was the day we left. I'd run over to PICU to take them a plate of food and say we'd be praying for them. She told me that day, that they were going to have a conference call with the hospital in St. Louis (who would do the transplant) in a couple of days. I tried to find his facebook page after we got home, but wasn't able to. Today, in the paper was his obituary. It broke my heart, and I cannot even begin to imagine how difficult this is for his parents and his brother and sister. Please pray for Tre's family during their darkest hour.

Saturday, February 11, 2012

What a difference a year makes!

Today marks a year since I first saw an email that began " Urgent plea for 13 yr old" . A year since I looked at a picture of a girl who was dangerously close to being a forever orphan. Judged in her country by the fact she had scoliosis and no family. A difficult place to be. When I saw her file it scared me. I wasn't looking to adopt two children at the same time, and never had any intention of adopting a teenager. However, for reasons I couldn't explain at the time, here is the email I sent to Annie, the one who was advocating for Xiaoyun

"I don't know why I'm even asking, except that it breaks my heart to see this girl who has suffered so much. Our dossier isn't even in China yet (will be sent next week), so I know, short of a miracle there would be no way we could be paper ready for another one by the time she ages out. We are already locked in for a 7 yr old (we adopted our first China princess last May). Also, unless finances changed I don't see how in the world we could afford this. However, having said all that, could you at least give me the list number she is on so I can look at her file? Thank you for advocating for these precious children! Cindy"

By the time Virgil got home from work, I was an emotional wreck. I asked him to sit down and not say anything until I'd told him everything I knew. He listened to me and said " I guess we need to contact our agency and see if we can adopt her".

The rest, as they say, is history- a miracle really. 'His' story, of moving mountains, miracle after miracle, to bring home Xiaoyun and Enya only 10 weeks after we first saw the plea for Xiaoyun. He put people in our path to help walk us through the process of adopting quickly, adopting an older child, and those familiar with scoliosis (of which I knew nothing). God opened the 'floodgates of Heaven' and provided finances, without our even asking anyone else. Money was even sent by complete strangers!!!!
I spoke with a lady the other day and was telling her, " If I had to put it down on paper, or even explain it, I couldn't. We've adopted 3 children in a year. I'm a stay at home mom, and we aren't 'well off' by US standards. Yet, if you looked at our finances, you'd never know we've adopted three children. Truly God's provision!
This year has been hectic, chaotic, filled with doctor's appointments, 2 surgeries for Enya, and 4 for Xiaoyun, adjustments, and days of feeling overwhelmed.
It has also been filled with laughter, little feet running through the house, hugs, kisses, 'I love you's!!!', hide and seek, and LOVE, LOVE, LOVE!!!! I wouldn't trade my wonderful, crazy life for anything!!!!!!!

Thursday, February 9, 2012

Picture of Makenna

Some of you commented that the picture didn't come through, so I'm trying posting it a different way - hope this works!!!

Wednesday, February 8, 2012

Makenna - perhaps your new daughter?

I was recently asked if I would post Makenna's information on our blog in the hopes that her forever family might be found. She, like Xiaoyun, has congenital scoliosis, but was able to have 2 surgeries already to correct this. Also, like Xiaoyun was at this time last year, she is very close to losing her opportunity to have a family. She'll be 14 on December 2. Lest you think that is not enough time to get your paperwork together - at this time last year we had never seen a file of Xiaoyun (we saw her file mid February), but I had Xiaoyun in my arms 10 weeks after looking at her file. It can be done and will change this beautiful girl's life ( and yours!) forever!!!! I am able to get more detailed medical information about Makenna if anyone is interested. She was agency specific, but has just recently went back on the shared list. If you'd like more information leave a comment (I promise not to post it!!) with your email and I'll make sure you get it. Praying she receives her miracle too!!!!!!!!

Here is the information I received:

"Makenna is a pretty young girl who will be 13 years old on December 2. She only has 1 more year to find a family before she will no longer be eligible for adoption under Chinese law. She has had several surgeries; one when she was an infant to remove the meningocele on her back, then one to correct her scoliosis in 2007 and another for scoliosis in 2009. Makenna is a delightful young girl who is very smart and very compassionate toward others. She has received several awards at school for her abilities. She is very fond of reading and loves to do needlework. She is quiet and thoughtful. She is very polite and will always share with others. Her teachers, nannies and friends all love her very much. Makenna has endured many surgeries and always faced them with bravery. This sweet girl is ready to be brave yet again and face a whole new world...a new family, school, friends, language, customs...but she is ready. She only has one more year to find you... Makenna was abandoned as an infant at a hospital and after the search for her birthparents failed, she was sent to a welfare institute to be raised. In 1999, she underwent surgery for a spinda bifida related tumor on her back and was diagnosed with scoliosis. She underwent further corrective surgeries in 2007 and 2009, which have greatly improved her scoliosis. Her caretakers say she has adapted well to life in the orphanage and considers the other children her brothers and sisters. She is described as a helpful, kind, introverted, shy and cute girl. She enjoys cross-stitch, reading books, and is loved by her teachers. Though a little behind in school due to missing classes due to having surgeries, Makenna is very smart, works hard and has earned several awards in school. Makenna has told her caretakers that if she were adopted, she would miss her caregivers and the children she calls her brothers and sisters. She would love to go back and visit them if she ever had the chance. She also desires her own mother and father, a space of her own, and a warm family. MakennaFang has agreed to be adopted by a foreign family and would have the opportunity to know a life of love, growth and happiness. "



Monday, February 6, 2012

Description of Xiaoyun's surgeries -from a non-medical mom

For those of you who are considering adopting a child with scoliosis (or already have a child that needs surgery), I wanted to give you the medical terminology for what each of the surgeries entailed. In the perfect world, I would have a definition by all these, but I'm finally resigned to just getting this much done, and one day when life slows down (LOL!!!!) putting definitions by everything.

Background: Xiaoyun had congenital scoliosis that had never been treated. Her curvature was 160 degrees and was an S-curve. The area where the right scapula would normally be located is actually a part of her spine, and those vertebrae are turned around 180 degrees from the way they should face. Her lungs were compromised, because of curvature and her lung function was at 33%. Had her lung function been any lower she would have been considered too high risk for the operation. Also, because her lung function was so low, they decided it was too risky to wait another year or two. Pneumonia could have been deadly for her. Thankfully, though her heart had to work overtime to push the oxygen through, there had been no damage to her heart yet. As she aged the wall of the right side of her heart would have thickened, until the point that it caused her to go into cardiac arrest. This was truly a life saving operation for her. It was also not without quite a few risks - pneumonia, paralysis, infection, or worse. Because of the severity, her surgeon decided to do the surgeries in four parts- each a week apart if all went well from the previous surgery.
1. Halo placement - four pins inserted into her skull - they screw in between the outer and inner skull, two in the temple area and two behind the ears. The halo was then attached to a pulley system and weights were added until she finally reached 18 pounds of weight stretching out those muscles and ligaments.
2. Posterior spinal osteotomies, rib resection w/ spinal instrumentation, MEPS (removed part of 5 ribs, length of incision was about 12 inches - almost entire length of back).
3. Anterior spinal fusion, discectomy, thoracotomy, T6-possible T10-T11, Solera instrumentation, local bone, BBB, infuse, EM6, SSEPS, NIM, cell saver.  (The incision started under right arm and curved around to the front. She had a chest tube inserted just below incision area, one rib was removed and 'banked' at the hospital until last surgery, There were three different methods they used to monitor the nerves to make sure none were being compromised. The cell savor was a machine that captured the blood she lost, circulated it, and placed it back into her body. 6 discs were removed, as well as a wedge shaped piece of two vertebrae.)
4.Posterior Instrumented Fusion T2 - L3, Solera instrumentation, Cherron osteotomies, scoliosis correction, autograft, Infuse, SSEP, MMEP, NIM. (Placed two hooks - T1 and at T5 (T3 crumbled) and inserted a rod, also rod placed coming up from L3 - L1, rods attached to each other, the bone removed previously and banked, was ground up and used as the 'glue' between to vertebrae, they went in the same posterior incision as before, but had to cut up a little higher than last time. Halo was then removed. Because right portion of spine was turned completely around, they would have had to cut through all her muscles on that side. They would never have healed properly, so they weren't able to put a rod on that side.)
Instrumentation used was titanium so she will be able to have MRI's if needed.
She needed a unit of blood during each of the surgeries, and after 3 of the surgeries she needed an extra unit.

This seems overwhelming looking at this list, but please know that it is now February 6, her first surgery was on January 4, and we are now home, she's gained at least a pound since getting home, has grown 4 1/2 inches, and now has a FUTURE without heart damage and difficulty breathing. It is a miracle, especially when you consider that is has been less than a year since we first looked at her file.
God has been SO good to us and has blessed us with many, many people who have come along side us with love, support and PRAYERS. We are truly grateful that God has allowed us the privilege of watching a miracle in the process!!!!

Thursday, February 2, 2012

Living in a Whirlwind

As busy as we seemed to stay at the hospital, it seems magnified now. Trying to catch up after a month of survival mode, plus taking care of Xiaoyun (and two busy other girls ;-) !), takes up the day. Xiaoyun is doing very well, and we seem to be managing the pain pretty good. She's getting her strength back in her legs, and is moving around more, which helps to get her brace on. We still need to do some adjustments on the brace, which hopefully can be done tomorrow. It is difficult to fit her correctly, since she still has some curvature. She is sleeping well at night, for which I am so grateful!!! Her appetite is back now that she is at home, so hopefully we can get her weight back on her soon. I'm so glad my mom is still here to help!!!!!

Wednesday, February 1, 2012

brief update

It has been a great day, and a busy one. Virgil took the day off, and we've been enjoying being together (feeling almost normal ;-)! ). I haven't taken the time to stop and post today, and promise to catch up tomorrow. I think I will be able to figure out how to post the before and after pics of her back. I will say that the radiologist report said her curvature is now 67*!!!!!!! That is even better than hoped for. From 150* to 67* - thank you Lord! I do want to include a pic of three beautiful girls!!

Tuesday, January 31, 2012

We're HOME!!!! PRAISE the LORD

We're home!!!!!! The trip home went so much better than expected. She rested the entire hour and didn't mention pain until one minute from the house. She did so well after getting home, she told me she didn't need her pain medicine when it was due. Incredibly, she even sat up and ate supper (and ate WELL!!!!). It's been a hectic, but wonderful day. I'll post more tomorrow, but for now I'm going to sit with the family and enjoy being together. Thanks for all the prayers!!! It is obvious that many prayers were prayed! It is truly a miracle we are here at home!!!!

Monday, January 30, 2012

Almost HOME!!!!!!

Doesn't that luggage in the background look fantastic!!!!!!This morning, one of the surgeons came in and I asked what had to happen before we could go home. Basically we had done them all, so tomorrow we will all be together again!!! They will send her home with the medicine she is now taking (so glad we had gotten off the pain pump already), and will order some home therapy with a PT/OT. She won't be allowed to take a real bath for 3 more weeks, simply because the brace needs to be on anytime she is sitting or standing. At this point her back is still too unstable to be without it even for a short time. She is a little apprehensive about coming home, because she believes we won't be able to control her pain, but after talking a lot about it, I think she's getting more excited. The drive home is another matter, and I will talk to the nurses in the morning about what we can give her that will make the hour drive as easy as possible. She hates the brace and having it on that length of time is going to be a challenge. The brace shop didn't come by today like they were supposed to (not very happy about that), so the nurses said they'll start calling first thing in the morning to get them moving. Xiaoyun's brace had several areas that are too tight and are rubbing, causing a lot of pain.
We did have a treat today - Andrea came back again and gave us both another massage. It really helped Xiaoyun's neck, as well as mine ;-) . So sweet of her to come again and do that.
Xiaoyun and I had a long night, so I'll post more later!

Sunday, January 29, 2012

Turned a corner

What a difference a day makes! Yesterday, there were tears, begging, and pleading not to get her up. Today she has been up 5 times and walked twice around the floor. Not that she is liking the brace (at all!!!!), but we've turned a corner, I think. We're down to the PICC line (used to give meds, but no longer for the fluids and pain pump), and the leg compression at night. We've lost a lot of hardware in the last couple of days, and are actually wearing clothes now! Morphine is on the list if needed, but so far since the pain pump removal, she's not used it. We'll talk to the surgeon tomorrow to see what needs to happen before we can go home (doesn't that sound WONDERFUL!!!!!!). The last few days she been very unhappy, which I'd be too, and has said she just wants to go back to how she used to be. This afternoon, however, she perked up, watched movies with me, Virgil, Elli, and Enya, and ate a lot of popcorn. It was like a switch went off and she started smiling again. Glad to see that light in her eyes again!
My mom and Emily (our oldest daughter) stayed last night at the hospital, and for the first time in almost 4 weeks,Virgil and I were home at the same time. The girls were happy to have us both home and we were too (except for feeling guilty for not being at the hospital). We can't wait for all of us to be together again!!!!

To K, who mentioned advocating for a girl who will be aging out in the fall, please send me the info :-)
To those who have just sent Xiaoyun  cards - thank you and we look forward to receiving them!!!!!

Thanks to all who are praying for Tre!!!!!!!

To our friend who has adopted from Hefei - we also have an Anhui beauty (Fuyang)

Saturday, January 28, 2012


I'll start by saying that last night around 11pm they had a room become available, so we are now back out of PICU. So thankful to be back in a room, however, yesterday things were put into a little better perspective for me. In the bed beside Xiaoyun on PICU was a little 4 yr old boy. While I've been whining about being in the PICU for a few days, I found out he has been in PICU for over 2 MONTHS!!!! He needs a lung transplant and won't be able to go home until insurance approves the transplant, gets on the donor list, then flies to St. Louis to have the transplant done. I can't imagine how difficult this is for his parents. They also have 2 other little ones and live in the same town as us - an hour away. His mom said that at first they had a lot of support, but as time goes by, support dwindles. I asked her if I could post his name so you all could remember him in your prayers. His name is Tre (pronounced like Trey), and is hooked up to so many machines that is breaks your heart. It was a good reminder to me about how much so many are suffering and how much I have to be thankful for!!!!

Xiaoyun got the brace on and got up out of bed this afternoon! She also got the drain tube removed, as well as the Foley, and the bandages on her back. They took her off the pain pump, and though she still has the PICC in, it is not being used except when they need to give her medicine. She walked a few steps (not willingly) for the first time in a week and a half. Unfortunately, the brace didn't fit quite right and rubbed her neck, which made her think it was choking her. They went ahead and took it off and had the orthotics department come in and adjust it again. Thankfully, he happened to be just down the street and was able to come and adjust it quickly. Getting up made her nauseous and wore her out. Some Zophran (?) and a nap is where we are at this point. We are so much closer to going home now!!!!!

Friday, January 27, 2012

Thought it best to post now, because once I switch with Virgil and get home, I'm pretty sure I'm going to crash. They came in to check to make sure brace was a good fit, and Xiaoyun got very unhappy very quickly. He ended up not even trying the back part on, since he knew he needed adjustments on the front. One of Xiaoyun's doctors came in in the midst of all this, and changed her orders to give her another days rest before putting on brace and starting therapy. She was relieved and so was I! I must say, this is the worst mood she's been in since getting here that I can remember. She hasn't been friendly with anyone who's come through and hasn't wanted to talk or even let them do blood pressure. I think she's had enough and being in a noisier environment just makes it worse. I completely understand because even I, who's just fine, am weary and uncomfortable. So many surgeries in such a short time Please pray for strength for her and a restful night sleep for her and Virgil (who she keeps asking for over and over). He'll be here soon and that might cheer her up.

And We Wait

What  we hoped would happen last night now probably won't even happen today - there are no rooms, and I know there are at least 10 kids in the ER waiting for a room, so we're now hoping to have a room by tomorrow. The surgeon came in and looked at the incision area. It is dry as a bone, so all is well there. She still has a drain tube in and they want to leave that until tomorrow. The surgeon brought me the leftover instrumentation from her rods. I'll post a picture of these once we have the camera fixed (stopped working yesterday). The rods are smaller than I had thought they would be. I believe we will be having them made into some jewelry at some point after we get home. The side incision site from last week is looking great. I can't believe how well her little body is healing after each incision! Later today, after she gets her brace, physical therapy and occupational therapy will come and help her get out of bed. We'd love extra prayers for today, since rolling over on her side hurts, much less trying to sit up and then stand. I'm sure the brace will also be painful since the drain tube is still in, and the incision site is very tender.

Thursday, January 26, 2012

What a Sweetheart!

Xiaoyun had been asleep for a couple of hours after the pain of the brace molding. She finally woke up and asked for orange sherbet. I went to get it, and when I came back she was trying to tell the nurse something. She was saying she wanted a room. I told the nurse what she was saying, and she said there are 4 kids waiting for a room and they aren't sure when she'll get one. Once she told Xiaoyun this, Xiaoyun looks at her and says 'You need to get my Mama a new chair. She can't sleep in that chair - it is broken" (the chair is broken, and Virgil spent a very uncomfortable night in it last night). Can you believe it? Here she has been through so much pain, and she's worried that I won't have a good place to sleep tonight!!!!!!!! WOW!!!!

Brace Molding

Yesterday's post said they made the mold for her brace while in surgery (which is what we were told would happen), but unfortunately they did not do that. They came in earlier to make one, and once they realized her back is not flat, they left and came back later with some help. It was a rough 30 - 40 minutes, to say the very least. They laid a cloth over her and used the fiberglass - like they use to make a cast - to make a mold of her front. That was painful, because they had to smooth it all down, which included the area where she had had the chest tube and the anterior/side incision. Then it really got ugly. They had to flip her over on her stomach (with her begging and crying for them not to), and make a mold of the back. I can not begin to imagine how much it hurt to have them touching the incision area on the back. It broke my heart not to be able to do anything about the pain. She had to lay that way until the fiberglass had dried and then the process of flipping her back over. She is sleeping now, thankfully. We are still waiting to get into a room again. The paperwork is complete, but right now all the beds are full. It will be good to get to a room. She is in a bed beside a little one and it is pretty noisy at times. They will have her brace ready tomorrow and then they will be getting her up. I know that will be very difficult, but necessary to begin the process of getting her well enough to go home.

Yes, Pam, she loves anything crafty, and loves to read, but she isn't reading English yet - still simplified Chinese (though we're working on the English :-) ! )

Wednesday, January 25, 2012

Xiaoyun's address

Would love to get mail from those of you who have asked!!!
Evelyn (Xiaoyun) Willoughby
c/o Kosair's Children's Hospital
231 E. Chestnut Street
Louisville, KY 40202

Room number will change,but they are good about finding us :-)

From those who have already sent messages - THANK YOU!! They mean so much!!!

Another Successful Surgery

Praise God!!! She's finished her fourth and final surgery! It didn't go as smoothly as they would have liked, but overall it went well. They put what the surgeon calls 'hooks' in the left side on T1 and T3, and also some hooks in the L1-3 level.When they tried to put a rod in however, the area around the hook at the T3 level crumbled. They were able to put a hook at T5, and ended up using two rods on the left side. That way they were able to adjust the rods as they went and once everything looked good they fixed the rods together permanently. Unfortunately, on the right side they were unable to put a rod in at all. Her spine is turned 180* on that side, and in order to put a rod in they would have had to cut through all the muscles in that area. Since her body already has a tendency to hunch forward on that side, the muscles (that would never be as strong again after being cut) would not have kept her as upright as she needed. Because of that she will still have some compression of the lungs on that side, but it will be better since her diaphragm has more space now. The ribs on the other side he described as now being spaced apart verses almost touching each other, so that lung has really been opened up. He estimates that she is now somewhere between 65* and 75* curvature (she was at 150*!!!). They made the mold for her brace while still in surgery, and it should be ready in 2-3 days. She can't walk until she gets the brace, but will be able to sit up. Once home, she will have to wear the brace all the time except when she is in the bed. She should need it for somewhere from 3-6 months depending on how she fuses. I'm fairly confident she will not be happy with the brace, because it will come up to her chin in the front (since the top left fusion area wasn't as strong, they need to make sure she keeps her neck upright while the bones are fusing.)
Prayers tonight for her pain and for rest for both her and Virgil. Our goal is to be out of PICU as soon as possible and back on a floor. Thank you so very much for all the prayers that continue to be prayed on her behalf!!!

She's in Surgery

Here is a pic right before they wheeled Xiaoyun back for her final surgery. As you can see, she's quite the trooper and was smiling until the medicine went to work. It was a restless night for us all. Probably a combination of anticipation, and little ones in the rooms on each side of us that were not happy most of the night.
Dr. Johnson gave us the rundown. Please forgive me for giving a very simplified version of what he said - I have a copy of the technical terminology and will post that later- but for now here is the gist of it: They will go in and remove temporary rods (going through the same incision as two weeks ago - posterior) and halo (YEAH!); she will have a CT that will give a 3-D image of where they are and what they want to do; they bring in 'Navigation System' which will guide the doctors and also do some of the surgery, since her vertebrae are so tiny. This system is very precise, but also slow, so things will take longer.; build her backbone from T2-L3; do more CT with 3-D imaging as they go along; and put in permanent rods. She will be hooked up to a neuromonitoring system, that watches muscles twitches, etc. to make sure neurologically they do no damage.
This is the most delicate of the surgeries and the longest (because of the down time waiting for the CT scans). Please continue those prayers!

Tuesday, January 24, 2012

Gift From Addison Jo Blair Foundation

This is a picture of Xiaoyun as she checked out a gift basket given to her by the Addison Jo Blair Foundation last night. Addison Jo was a little girl from our hometown who fought a brave battle with cancer. Her parents started this foundation to honor her memory. As we realized who the gift was from, it was all I could do not to start crying (which would not have been the best thing for Xiaoyun prior to surgery). We had prayed for this little one and her family, not so very long ago. Addison Jo continues to bless others with these gifts that bring a smile to a child's face. Thank you Blair family!!!!!!

Almost at the finish line

Xiaoyun was playing a game and didn't realize her Mamaw had just arrived from Alabama!
We are coming  to the end of the surgeries. Tomorrow around 8 am, Xiaoyun's 4th and final surgery will begin. Her Mamaw came in today to stay for a couple of weeks, which makes logistics so much easier with Elli and Enya. Xiaoyun had another furry visitor today that, from what I've heard, shared many kisses with Xiaoyun. She also had several human visitors, and cards and messages from around the states and even Spain! (And yes, friend in Australia, she'd love a message from Australia!!!) She got one from Singapore yesterday! It will probably be later into the evening tomorrow before I am able to update after surgery (unless there is a big gap between when the surgeon talks with us and she gets to PICU, in which case, I'll post sooner). Thankfully they treated for the UTI and that will not be an issue with the surgery. I continue to be amazed at her resiliency! Truly she is a miracle - when I think of what has happened in the last year and how God orchestrated all this, it just awes me!!! Thank you in advance for extra prayers in the next few days!!!

Monday, January 23, 2012

Xin Nian Kuai Le - Happy Chinese New Year!!

It is late, so I'll give just a brief update. Xiaoyun had a good day today. She and I were both blessed to get a massage from a sweet girl who wanted to be a blessing - and it was a blessing that we both enjoyed! Xiaoyun enjoyed having those little hands and feet pampered, and my shoulders felt better than they have since we started our hospital stay. Thank you Andrea!!! The art therapists came in and helped her make a crown to wear once her 'crown' (halo) is removed on Wednesday. In true Xiaoyun style, it is 'blingy', to say the least. She had several visitors today, and got a scrapbook that we will start filling up with pictures and cards once she gets through the next surgery. It will be good motivation to get up out of bed and sit in a chair. They did discover she has a UTI, and she received medication a few minutes ago that will hopefully take care of it. I'm thankful it was caught before we were any closer to surgery - we'd sure hate to have to delay it for any reason. Virgil, Elli and Enya came up this evening so we could rotate out, and we all celebrated Chinese New Year by eating the Chinese food brought to us yesterday. We will have a belated New Year celebration once Xiaoyun is home from the hospital.

Our Chinese New Year Celebration

Here is a photo of our Chinese New Year ;-) Elli and LiLi (Enya) were really getting into the stir fry! Xiaoyun is wearing her special glasses, so she can see all the action.

Questions/ Answers for posters

-Xiaoyun means little cloud and is pronounced sh (as in ship) ow (as in cow) yeen
-Aus, I can't figure out to email you (not very computer literate)
-Next surgery is Wednesday morning (final surgery - yeah!!) and will begin around 8 am and will last most of the day. A lot of that is down time. They will do a bit, then do a CT and check progress, and also use a machine that is very exact and does part of the procedure for the surgeons (can't think of the name of that right now and will post that later).
At this point we do not know what her final curvature will be, nor how many inches she will gain.
They will have her up walking the 3rd day and we'll be able to measure her then (we are excited about that :-)  !)
The rods they will put in are permanent and are designed to keep her back stable until the vertebrae fuse together. She will not be able to bend where the fusion is done, so bending will take place from waist down.
She will have a brace molded to her body after surgery, that she will wear for 3-6 months after surgery.
- Leonor and Juan, we haven't received card yet, but are looking forward to it!!!
-Thanks to all who have shared her video and all who have sent cards and well wishes (along with lots of goodies!!!!)

Sunday, January 22, 2012

Another Sunday Down

Emily, LiLi, Zak, and Elli
Xiaoyun's decorated halo (courtesy of big brother zak)
PICC line is working again!! So glad whatever the problem was, resolved itself so they didn't have to go in and redo that PICC. Her brother Zak, had to go back to Minnesota this afternoon, but we were all really glad to have the weekend with him. They got in quite a few movies and he decorated her halo.  Her food intake has been pretty good today. Her great Aunt Estell brought her a lot of Chinese food for supper, and we'll enjoy it again tomorrow to help us celebrate Chinese New Year (Happy Chinese New Year, John, if you are reading this!!!! Girl's were excited to get your message! They are doing so well! ) . Xiaoyun has been blessed with prayers and good wishes from around the world. We are truly thankful for each one!

Saturday, January 21, 2012

Xiaoyun had a busy day today. She had to have three chest x rays (which are painful) and got the chest tube removed (Yeah!). The PICC line issue was never resolved. She is still using the IV in the other arm and waiting for the IV team to determine if the PICC is still good. The x ray of the PICC showed no infiltration, and they are going to try just putting fluids in it again to see what will happen. By this evening she will be back up to her full 18 pounds of traction. She is quite happy to leave it on at all times, which is a good thing, since that will help determine how straight she ends up being in the end. Her incision down the back is looking great and seems to be healing nicely (though if I understand correctly, they go in the same incision again for the last surgery). She's eating well and all in all doing very well considering all that she's been through the last few weeks.

Friday, January 20, 2012

Change of Plans

Xiaoyun (with special glasses on) and Zak
So the slumber party was not meant to be. Xiaoyun had had a good afternoon, enjoying being with Zak and eating a bit. One of the child life specialist's had procured for her the one and only pair of special glasses in the hospital that allowed her to watch the tv while looking straight up at the ceiling. She was having a blast with those glasses and we were having a fun time, when all of the sudden she started telling me that under her arm felt swollen. I didn't think much about it, since it was around the area of her incision, and didn't look abnormal to me. A few minutes passed, and she started complaining about that area hurting and being hot. She looked at me and said "Mama, I'm not strong" I didn't know what she was talking about, but she went on to say that she was going to cry. Oh My Heart!!!! I quickly assured her that strong people cry and it was fine to let it out. The nurse came in and thought perhaps her PICC line had been infiltrated (leaking out). An x ray was ordered, and all her meds/fluids moved to her other arm where a backup IV was located. By then she was really hurting and the x ray made it much worse. They gave her some more medicine and once the fluids had been out of her PICC line for a bit, she settled down and started feeling better.Virgil walked into the midst of the chaos, and plans were changed and he stayed with Xiaoyun and Zak.  The x ray showed no infiltration, but they're not sure what is going on yet. The IV team will come in the morning and decide what to do. Hopefully she will not have to have another IV started tonight, but I'm afraid with all the stuff going into that one vein, it might blow. Please continue to keep her in your prayers!!!!
Xiaoyun rested better last night, though I could hear the pain pump being pushed fairly often. Early this morning they came in to do an xray and it didn't come out clear enough, so they came back in to do it again. Sliding that hard film under her back was very uncomfortable, and since then she's had a hard time resting. She had said over and over that her pain pump wasn't working, so they finally increased the amount of meds and now she's finally sleeping. She will be on her back until the next surgery, because her back is now unstable with all they did this previous surgery. The surgeons continue to be pleased, and this morning the other surgeon came in and mentioned how much everybody in the hospital thinks of Xiaoyun. Even in the midst of the pain, she continues to say thank you when someone comes in.
Her older brother, Zak, should have just landed at the Louisville airport a few minutes ago. He flew in from Minnesota just to be with her for this weekend. He and Emily (our 19 year old daughter) are planning on staying with Xiaoyun tonight and having movie and popcorn, if she's feeling like it. The secretary on the floor heard they were having a 'slumber party' and brought in bags of popcorn for them this morning. We continue to be blessed by all those who we come into contact with here at Kaosairs!!!
I've included pictures of PICU (where she goes after surgery each time), and of the view from her new room. It's hard to see, but she was trying to give a little smile in the pic.

Thursday, January 19, 2012

Prayers Answered!

Thank you all for the prayers! Xiaoyun and Virgil were able to rest some last night, despite being in a very loud area. Xiaoyun's only request, besides saying more pain medicine, was to be in her old room. She has such a hard time resting when there is a lot of commotion. When the surgeon came in this morning, that was what she asked him, and he was happy to oblige!!!!! We were so surprised, since we figured we'd be in PICU for several days, given the type of surgery she had had. I guess the doctor could also see how agitated she was with all the noise. We finally got to a room around 7 this evening and she's been resting since we got here. It surprised me the difference in her just getting into a peaceful area. The surgeon is very happy with how she is doing. He said in the 30 years he's been a surgeon, she's been the best patient he has had - every surgery going better than expected. Praise God for that!!!!! She's even eaten some solid food today, which is a huge improvement over last time. Will post more in the am.

Wednesday, January 18, 2012

3rd surgery complete/ much pain

Xiaoyun's 3rd surgery went well according to her surgeon. He was pleased with the amount of movement she had. They were able to remove 6 discs (they were hoping to remove 5), a wedge piece of two vertebrae, and a rib. The rib will be 'banked' until the next surgery, at which time it will be ground up and used to help fuse the vertebrae together. I'm not sure if the wedge of vertebrae was also saved for that purpose. She had to have a unit of blood, along with what they called 'cell saver', where they take the blood she loses during surgery, put it through a machine and then put back into her. She has a chest tube that we hope to have out in 2 days. We knew this surgery would be bad, but what I didn't realize is that they say this incision is considered more painful than if she'd had to be cut open for open heart surgery. She got to PICU around 3pm, and has been in quite a bit of pain since then. She has to lie flat for the first 4 hours and that is so uncomfortable for her. She kept begging for a pillow over and over again.
This is Virgil's night to stay with her, and since we didn't get much sleep last night, he sent me on home to try and rest before my long day/night tomorrow. Unfortunately, PICU is full, so she is in the open bay area, which will make it even more difficult for her to rest. As I am leaving, in the midst of all her pain, she says " Love you Mama, be careful driving home" Needless to say, I could barely see to get to the elevators because I was crying so hard. These surgeries are ripping my heart out, but also showing what a brave, incredible girl we have been blessed to have in our family! PLEASE say extra prayers for Xiaoyun tonight and in the next few days. They will be difficult ones for her.

Tuesday, January 17, 2012

Gearing up for Surgery #3

It's a shame that when you start feeling much better, you have to start all over again, but that is where we're about to be. The surgery is slotted for 9 am tomorrow. Today, except for a while this morning, has been a good day. She's able to get out of bed fairly easily on her own, and walked her loop around the floor pretty quickly. The child life therapist helped her create some jewelry today from a kit some sweet people brought her yesterday. She received quite a few cheer cards and mail today and loved it all!!!! We'll be sporting some Hello Kitty fingernails as soon as we're allowed to, thanks to JunFen ;-). Her older sister is trying to talk her out of a really cute purse and some jewelry two other sweethearts sent her. The outpouring of love continues to amaze and humble me. We are so blessed! She also had a furry visitor again today. As you can see by the photo, she loves animals! To top the day off, her Aunt Tonya brought her some Chinese food with the special sauce that she loves. I'm glad today has been a good one, since I know how hard the next few will be.

Xiaoyun making her crafts
Xiaoyun checking out our sleeping arrangements
Xiaoyun and her fun visitor
The world's largest balloon
*The excitement keeps coming! The 'balloon angels' as they are called, just came in with an armload of balloons and asked Xiaoyun which one she wanted. No kidding, when she saw the balloons she started screaming and laughing!!! She picked the biggest balloon they had and just thinks that's the coolest thing in the world LOL!

Monday, January 16, 2012

Xiaoyun had a restless night - couldn't get comfortable and complained about her back itching. She had what looked like a blister next to her incision that was bothering her, and at some point through the night it finally broke open. The doctors seem to think it was a reaction to some tape used during the surgery, but aren't sure. We had about one solid 1 1/2 hours sleep and the rest was intermittent. This morning the surgeon came by and said all looked well for the next surgery on Wednesday. It is an anterior cut that is on the right side. They will remove another rib and vertebrae/discs. I asked him how many, and his reply was "As many as we can get our hands on - probably about five." He thinks the surgery will be shorter than the last one, and we're praying she bounces back quicker than the last one. It will be such a relief when we can finally get the halo/traction off of her, though that won't happen until the final surgery. The physical therapist came and had her walk a loop around the floor this morning - probably about 200 yards, and we did the same stroll again this afternoon. She did have one really rough spell early afternoon, but once I got her up in the wheelchair and distracted, she calmed down (thank goodness!). The child life therapist came by to have Xiaoyun paint a paper hot air balloon and make origami cranes late this afternoon, and that was very enjoyable to Xiaoyun. The therapist hung them from her ceiling and it appears as though we have a flock of cranes flying overhead. By the time Baba got there for the evening, she was doing much better and moving freely (though slowly) on her own - such a difference than just a couple of days ago!

*BTW - if you sent Xiaoyun a cheer card the last few days, she didn't receive them. They had a glitch with their computer and lost some messages. If you wouldn't mind to resend them, she'd really love to get them!!!  - click on Cheer Cards, and put Evelyn Willoughby (not sure if just Xiaoyun Willoughby would get to her. Thanks so much!

Sunday, January 15, 2012

Baba and his baby
Getting out of bed alone for 1st time since 2nd surgery. So glad to see that smile again!!!!

What an Improvement!!!!

Today has been so much better! Xiaoyun is actually walking to the bathroom, and even managed to walk down the hallway. She sat up for a couple of hours in her wheelchair, and has eaten quite a bit more food than she has in days. Her pain pump and IV are gone (still has PICC line, but not using it). We actually got to laughing about something, until it hurt her too much to laugh! The surgeon still is planning on Wednesday surgery. Besides removing some vertebrae and discs, they are also going to remove another rib. This will be an anterior cut. She's sitting up right now reading Diary of a Wimpy Kid (in Simplified Chinese), which is a far cry from where we were just two days ago. Praise the Lord for answered prayers!!!

Saturday, January 14, 2012

Xiaoyun made some good progress today. She got out of bed to sit in her wheelchair for a while, and walked to the bathroom twice today!!! She also ate a bit of her lunch and 20 bites of supper (we now have to count every bite and every ounce going into her, since she went so long without eating a bite). She's back up to her 18 pounds of traction - think about that for a minute - 18 pounds of weight pulling on her head, with an incision going down her back that is 12 inches long (all on a girl who is 46 inches tall and 46 pounds!!!) It is incredible what she is going through. Praise God for answering prayers!!!
I went up for the afternoon and came home to be with the other girls tonight. When I got home, I find out Elli had just finished getting the blood cleaned off her. She fell getting off the chair and caught the corner of the chair. Elli didn't say much about it, and it wasn't until Emily realized there was blood getting on her that they realized what had happened. She had a cut on her head about 1 1/2 inches long. Elli didn't start crying until she realized that there was blood running down her face. I cleaned her up some more, and fortunately it doesn't appear deep, though I'll keep an eye on her tonight. Not sure how much more excitement we can stand around here!

Lest it seem as though all I do is complain, I do want to take a minute and say how grateful I am:
For God's peace, and grace and strength
For the prayers of so many
For an incredible staff of people at Kosair's Hospital who are taking such good care of us all
For those who have fixed food
For those special people who are watching the girls everyday for us
For every email, Cheer Card, gift, handmade card, text message, phone call and love sent to Xiaoyun from all over the country
For the incredible strength and love of my husband and Xiaoyun's Baba
For the sweet prayers Elli and LiLi pray all day long for 'Xiaoyun and Baba and Mama'
For Em's help with the girls
For Xiaoyun's brothers, sisters, and family (and so many friends!!) that care so much
For so many more things that will have to wait for another day :-)

God is GOOD!!!!!!!

Thanks for those prayers!!

Sorry I didn't post last night. By the time I got home from the hospital and put Elli and Enya to bed, I had reached my limit and went to bed myself. Xiaoyun did get up twice yesterday - not by choice. She begged and cried to not be moved, which is difficult for a Mama who knows it has to be done. The second time she was up, she walked a few steps (with a lot of assistance) to have her standing xray done. Once we left there, we were able to go straight to the new floor (YEAH! The people in PICU are great, but it is a busy, noisy place, which makes it difficult for her to rest). It was a productive day - drain tube removed, dressing changed, sponge bath and teeth brushed, stood up twice, and moved rooms. Needless to say, by the time Virgil got there last night and I left, she had spiraled into crying and was not able to get comfortable. She was up to 13 pounds of traction before I left last night, so I'm guessing we are now at 15 pounds. Virgil said she (they) had a long night and the pain really kept her agitated. She did finally eat some jello yesterday afternoon, but I fully expected the feeding tube to be put in this morning. About 2 am, however, Virgil had a talk with her and told her if she didn't start eating what would happen. She asked "What's a feeding tube?". He told her and immediately she said she wanted some chips ;-). Since then she's eaten chips, part of breakfast, and I believe another jello. She also ordered stir fry for lunch. The doctors said this morning they want her up in her chair twice a day and walking a little today. I'll post more this evening!

Friday, January 13, 2012

Prayers Please!

Xiaoyun is feeling rough right now. Moving her causes quite a bit of pain. The therapist comes in around 2 this afternoon and will get her up and walk with her, which we know will hurt. If you have a moment around that time, we'd love all the prayers we can get!!! Also, they said if she didn't start eating and getting enough nutrients in today they will be placing a feeding tube down her nose. I was able to get her to eat maybe 2 ounces of chicken noodle soup a few minutes ago, which is the first food she's had since the night before surgery.

Thursday, January 12, 2012

Xiaoyun is resting well right now. This morning she was in quite a bit of pain, so they decided not to get her up or do the chest x-ray (since it is a standing x-ray). All that will happen in the morning, so hopefully she'll get a good rest tonight. Her blood pressure has been low, so they are backing off her pain medicine some. She's also running a 101.5 fever, that they're keeping an eye on. They feel once she gets moving tomorrow, that will go away. She did talk with me a bit (though she can only whisper right now) and we opened get well cards from all around the country. Those did bring a tiny smile to her face. She's back up to 7 pounds of traction and that will increase by a pound every 4 hours. If she isn't eating by tomorrow they will have to start some IV nutrition through her PICC line. She had some more nausea earlier today, but none this afternoon, so hopefully that is passing.
Virgil and I continue to rotate nights home with the girls (except the night prior to surgery when we both stayed up here). I can't begin to tell you how hard it is being an hour away from Xiaoyun when I'm with the other girls, or being away from the other ones when I'm up here at the hospital. It breaks my heart to have to say goodbye to my girls everyday. I'm so thankful for family and friends who take such good care of the girls while I'm away, but still it is hard. My heart goes out to those families who deal with long term health issues with their children. While the hello kisses are so sweet, those goodbye kisses just about do me in. I'm so grateful that we already have two of the surgeries behind us and that there is a light at the end of this tunnel. I'm even more grateful God is carrying each of us through this and doing it in such a mighty way! He continues to work miracles!!!!! Continued thanks for all your prayers!!!!!

Sweet Sleep

Virgil said Xiaoyun slept through most of the night, which is a praise! Today will be a different story, I'm sure, because the therapists will be coming in to get her moving some, and they want her to start walking. One of the doctors came by this morning and said she could grow quite a bit - some because of the procedure, but even after it is complete they said she'll continue to grow some. They said she has a lot of flexibility (which is incredible considering her curvature). The surgeon hasn't been in yet, so I'll update more later.
Prayers for today: they start her back on her traction, she has to start walking, and for the chest xray (to make sure there are still no tears in the pleura).

*Someone had asked about nutrition - they have found a high protein/ calorie juice drink that she will drink, she really likes the ice cream, and they found a stir fry she really likes (though not on the menu they made her one with everything in it she thought sounded good) They are trying to stay ahead of any nausea, which will make a big difference with the appetite. Today we'll start trying to entice her with any and everything, since the pain med will keep her from having much appetite.

Wednesday, January 11, 2012

Successful Surgery Number 2

Sorry it has taken me all day to post this. It's been a long day. Xiaoyun finally got to PICU around 2:30 this afternoon. The pleura has remained intact  (so far), so no chest tube was needed. She did, however, need a unit of blood when all was said and done. From what we can tell, it appears she has about a twelve inch incision down her back. Of course, it is bandaged up, so we'll probably know more about that tomorrow. The surgeon said her spine is turned almost completely around at one point from where it should be.They removed parts of four ribs (which the surgeon said will grow back to some extent), and put in the rods. They were very encouraged after opening her up to see what a difference the traction and temporary rods were making, especially in her lower back. She goes for another chest xray tomorrow to see if there were any tears. They want her up walking some tomorrow and they begin her traction again in the morning (they gave her a break today). They'll start her back at 5 pounds and then gradually build back up to 18 pounds just in time for another surgery next Wednesday.
Speaking of next Wednesday, the surgeon was really stressing the fact she shouldn't do any more pain medicine than is absolutely necessary after tomorrow, because it will cut her appetite down, which in turn may cause her to heal slowly from this surgery (which would mean having to postpone the next surgery). We'd appreciate prayers for a good appetite and minimal amounts of pain so she can avoid the medicine.
More to follow in the morning when I can think a little clearer!

One week and two surgeries down!!! Praise God!!!!!!!!

She's in surgery

Xiaoyun went back for her surgery around 7:15 am. Thanks to a great nurse, who was right there with her pain medicine every two hours, and all the prayers, we all slept last night. It was the best night sleep we've had since getting here. She was doing fine this morning when she went back, and graced us with one last smile before they wheeled her back. The surgeon said it could take 3 - 6 hours, and they had no way of knowing until they start the procedure. Since they are putting in a temporary rod, they will drop her traction weight down to 5 pounds after surgery and then slowly build back up. When they go in to remove the ribs, they said there is a chance that the pleura (?), the paper thin outer covering of the lungs, may tear. It that happens they will have to put in a chest tube. He said where they cut the ribs there could be rough end that could tear the tissue after the surgery is over. If that is the case, she will start having difficulty breathing, and they will need to insert a chest tube at that time. He said that may happen even 3 days after surgery. Just something to watch for. Will update more as we get updates. Thank you all for the prayers!!!
Xiaoyun, last night (Day 7) playing with Baba's glasses

Tuesday, January 10, 2012

Another Long Night

Virgil and Xiaoyun had another long night (we seem to be getting into a pattern here!). It wasn't until at least 3 am before she went to sleep (or Virgil) She couldn't get comfortable and even though they changed her position numerous times, it didn't seem to help. At a little after 4 am she tried to talk Virgil into taking a walk around the floor. She was trying to get off the traction ;-) . Unfortunately for her, they want her to be on as much as posible in preparation for the sugery. The xray showed that the traction is really helping the lower back in particular. She went in for a PICC line this morning around 9:30.  Dr. Johnson talked with Virgil this morning, and said they will be removing 5 or 6 ribs (the info yesterday was from an assistant and I'm not sure if they were looking at the wrong part of the file or if they changed their minds after seeing the xray) and inserting the temporary rods at 7:30 tomorrow morning. This is a posterior cut and we're not sure how long the incision will be. Hopefully we will all be able to get some rest tonight, because I'm not sure how much we'll be getting for a while after the surgery.

Monday, January 9, 2012

Xiaoyun had two of the friendliest visitors ever today! We loved her smile so much we had to share! She's still getting queasy at times, but they are doing a good job of managing that and the pain. We actually got an hour nap this morning (thanks to phenergen!!!). They came in and took an xray while in traction, but no word yet on how that looked. They also got her an air mattress just a few minutes ago, so we're hoping that will help with the back pain.
Tulips from her cousin Mandy
Xiaoyun also received some cards from families around the country whom we've never met. We are united with these families, however, by the special bond of adoption. I'm going to bring a map up tomorrow and we'll start marking off all the different states she receives messages from. I must confess, just reading these cards choked me up and it was all I could do not to start bawling!!! So many people showering our sweet daughter with love!!!!!!! We thank you all!!!