Olivia Yang Mann "The Bing" turns 2

We have been terrible bloggers the last couple of months - where does the time go?  We just got a new laptop, so hopefully it will be easier to upload our pictures - our home computer was taking a lifetime to do it!!!

We have so much to update everyone on!  First, on January 9th - our little girl turned 2!!!  It's so hard to believe that she has grown so much and that we have had her almost 11 months!!! :)  Time flies!!  Bing Bing is doing so well!  The last 4-6 weeks - she has really come into her own.

Her 1st birthday party in China

Our beautiful 2 year old

Medically - Olivia has done so well since her LADD procedure in Birmingham this past August.  She doesn't throw up near as much as before.  We are down to just a few times a week versus multiple times per day - we are thankful!!  Just before Christmas, we noticed that Olivia's hands and feet turned VERY blue after a bath!  The first time scared us to death and we called CHOP to talk to the cardiologist.  They didn't sound very concerned at all after learning she was a single ventricle patient.  The blue continued to occur after EVERY bath from then on.  We called the single ventricle program at CHOP, where Olivia is a patient, and they also didn't seem very concerned.  We had our regular 6 month appointment earlier this month and in talking with her pediatric cardiologist, also the Director of the Single Ventricle Program, they said the blueish tint we noticed will happen the rest of her life - even after her Fontan procedure.  They said it's just how her body is made and that when her body changes temperatures - that her hands, feet, and lips will turn very blue, but that she is perfectly fine!!  It will occur after baths, after getting out of the swimming pool, etc.  I asked if I should limit her time in the bath and they said no - just let her play and have fun. 
Her appointment was a full day of assessments and Miss Olivia Mann was SUCH A BIG GIRL!!!  She didn't cry at all!  This was her first time to handle everything so well.  We were like 2 beaming parents - just glowing at our big little girl!!!  She had an echocardiogram, EKG, and all the other things like oxygen levels, blood pressure, etc.  They said she looked great and was doing incredible.  Also, for the first time - our little turkey is on the growth chart!  YAY!  She is 5th percentile for height and weight :))).  In lieu of all this, they decided they might want to proceed with her next surgery earlier than anticipated.  Since her first heart surgery was in China, they also want to go ahead and do some of the preliminary testing for her Fontan procedure.  Usually this is done a week or so before the surgery, but they want to make sure and plan appropriately and they don't have any of her records from China.  So, it looks like June 13th - she will have a cardiac MRI, heart cath, and possibly a bronchoscopy.  We will spend one night in the hospital  and she will have a few days of recovery.  Mommy is a nervous wreck about all that is too come!!!  Most likely her next (and final :)) heart surgery will take place as early as this fall and as late as next March.  They will decide for sure after the heart cath.

Developmentally - Olivia is now getting once a week speech and occupational therapy.  They are so impressed with her every time they see her :).  They believe she will fully catch up and is doing everything she should be - just a little bit later than she would have normally done it.   Her best score was socially at 20 months (she was 24 months at her assessment), speech was assessed at 17 months, and physical was 14 months.  She has become so much more confident the last few weeks.  She was also so sweet to wave to people, but if they waved back - she would duck her head and get very shy - now she will talk to anyone ( in her own special language).  She is now saying some words in English - she can say mommy and daddy, good boy, ball, baby, uh-oh, Dee Dee, dirty, ma maw and paw paw, more, bye bye, hi, and Roll Tide :)... (more like "row ty"). 

We have one special little girl!!!  She is our dream come true and can't believe how blessed we are to have her in our lives!  God has special plans for this little girl :).

1st Christmas together as Olivia's forever family.....in PA

1st picture at the mall with Santa...not such a big fan!

 I (Danny) learned that Santa does not wrap presents in Downingtown, PA.  He leaves everything out, assembled, batteries inserted, and ready for play.

 LeapPad, some markers, an erasable mat for the markers, and an outfit.

 Julie's dream kitchen, complete with fake hardwood floor....she lets Olivia play in there sometimes.

 These ball pits are great, but they only come with 20 balls.  Just an evil ploy to make you buy more balls (you can get them in bags of 100 for $10 at Walmart).

 This kitchen will never look like this again.

 Hunter really likes the polar bear sherpa sleeping bag!

 Checking my email....don't you just hate all of these FWDs....people please....who has the time??

 Feel sorry for the baby riding in this stroller as Olivia drags it behind her with one hand....and on 2 wheels!

 I would like to place an order, please!

 Drinking my Cabbage Patch doll's play milk!

.... gotta try the play juice too!

 I guess I will have to cook something for myself since nobody would take my order!

 Oh, this is going to be sooooo good!

Looks like a little bit of static in the ball pit!

Our Miracle Baby!

I just found this article that was written on our precious Bing!!!  Geraldine Carroll with Project Hope wrote this article on World Heart Day.  It isn't that long, but a great read on the miracle of Miss Olivia Yang Mann! :)

http://www.projecthope.org/news-blogs/stories/project-hope-celebrates.html

I've posted it below too just in case the link doesn't work

Project HOPE Celebrates ‘Miracle Baby’ on World Heart Day

September 29, 2011

By: Geraldine Carroll

Baby Fu Bing Yang was born on a cold January day last year in the heart of the industrial Hengyang City in China’s Hunan province.  Nurses at the orphanage where Bing was living were extremely concerned about her frail health as she was less than a week old.  An Australian volunteer with International China Concern (ICC), a Christian development organization that supports sick children in China, was called in to help baby Bing .  The volunteer took Bing to her home to nourish and nurture her, and Bing progressed from a sickly 4 lbs to 7 lbs in 10 weeks.  Bing returned to the orphanage, but soon the nurses noticed that Bing’s skin had developed a worrying blue tinge.  It was suddenly evident that Bing had a serious heart condition and needed the urgent care of specialists at Shanghai Children’s Medical Center (SCMC).  Bing and her caregiver made the 15-hour train journey to Shanghai, where a group of skilled pediatric heart surgeons and U.S.-based specialists saved Bing’s life.
The doctors at Shanghai Children’s Medical Center realized Bing’s heart disease was far worse than originally diagnosed in Hengyang City.  Bing was gravely ill with complex heart disease, missing one chamber of her heart and with an absent spleen.
SCMC is one of the world’s premier pediatric heart centers, performing lifesaving heart surgery on more than 3,000 children each year.  Project HOPE helped develop the hospital, which opened in 1998, and has provided more than $30 million in medical equipment. HOPE continues to support SCMC through several training programs for professional health care workers in the areas of diabetes, children’s nutrition, HIV/AIDS and nurse training.
"Bing’s complex surgery is another example of how Project HOPE's mission of training local doctors, nurses and health professionals can offer the gift of life for future generations," said Lily Hsu of Project HOPE in Shanghai.

Bing’s story could have ended tragically were it not for the excellent international collaboration of the Shanghai Children’s Medical Center, International China Concern and the Swinfen Trust, an organization that has helped children who might not otherwise have had any hope of survival.  The Swinfen Trust was set up by Lord and Lady Swinfen in the United Kingdom, to assist poor, sick and disabled people in the developing world by establishing telemedicine links between hospital-based practitioners in the developing world and expert medical and surgical specialists who give free advice via the Internet has saved thousands.  Generous donors from a church in Australia raised tens of thousands of dollars to pay for Bing’s surgery. 
Linked into SCMC through teleconferencing Dr. Richard Jonas, Surgeon-in-Chief at Children’s National Medical Center in Washington, DC , and Dr. Karen Rheuban, Professor of Pediatrics at University of Virginia, consulted doctors and nurses responsible for Bing's treatment.
“Thus far I have personally cared for 15 children with congenital heart disease in the orphanages in China.  All have very, very serious health issues, some were critically ill.   Of these, I would say 8 have been referred to SCMC for surgery and all but one have survived,” said Dr. Rheuban.
“There is no question that but for telemedicine Bing and other children might not have had access to the specialty care they so desperately needed.  They traveled thousands of miles for surgical care and are proof that miracles do happen with more than a little help from the nurses of International China Concern, those who raised the funds for their surgery, the Swinfen Trust, Project HOPE and SCMC.

Meanwhile, another miracle was in the works for Baby Bing on the other side of the world in Hernando, Mississippi, where Julie and Danny Mann were deeply entrenched in a long adoption process to bring a frail baby Bing to her new home in the United States.  Baby Bing would become Olivia Mann, the heart of a large, warm Southern family who would dote on her every move and spend countless hours rebuilding Olivia’s strength, taking her to specialists and preparing her for the long, tough recovery process.
“Olivia was almost 15 months old when we finally got to hold her in our arms.  I'm not sure how much she weighed before her first surgery at 8 months, but she looked terribly thin after her surgery. She was only 12 pounds when we got her at almost 15 months old,” said Julie Mann.
Bing seems equally responsive to her Chinese and American names, adapting well to her new life, that will involve many trips to specialists as she gains strength.  Bing recently had surgery for severe reflux and will require an additional heart surgery next summer. 
“We don't even think about her being a sick baby - she's just our baby.  But the hardest part is having to watch her through all the doctors’ appointments. She is terrified of anyone with a stethoscope and it hurts me that she is so scared.  I cry every time we go to a doctor's appointment because I hurt for her.  We are traveling through the emotional journey of every new parent though.  Olivia is our first child and we were married for eight years before we became parents.
“Had Olivia not been taken in by ICC and then taken to SCMC, it would not have been possible for her to have her first birthday party!  That is how I explain the miracle of her life!”
Bing continues to capture the hearts of her adopted American community, and, as her mom explains, she has retained key cultural links to her birthplace.
“Bing LOVES the local Chinese restaurant food! How funny!  And they LOVE her!  Her favorite dish is chicken lo mein.”
World Heart Day was created in 2000 to inform people around the globe that heart disease and stroke are the world’s leading cause of death, claiming 17.1 million lives each year.

Christmas in Alabama...And then Pennsylvania

--My pictures are throwing me FITS!!!  I have more pictures that I can't post tonight b/c it's taking me FOREVER!!  I will finish these pics tomorrow--

Olivia has had such a great time with family the last few weeks.  First, my dad came up for Thanksgiving, then my mom came up for a week to keep Olivia while Danny worked his last week at work for while, then Danny's parents came up and spent a week!!  We have had such a great time!!  Then, really last minute, we came home to Alabama the weekend before Christmas.  My mom had been planning a family get-together ALL year with her sister's family (my Aunt Betty Lane) and we just couldn't miss it!  However, the flights were SO expensive that we just didn't see how we could go.  Danny ended up going on priceline.com and did the negotiator tool and got flights almost 50% less than any airline had - including pricelines prices (you get to pick the day - just not the time)!!!  So, we had a great, but quick, trip to Alabama and got a chance to see our family.  We didn't get to see any of our dear friends (so sorry to ALL our friends :( ) because our trip was so quick.  We love you all and can't wait to come back and hopefully spend more time so we can see everyone!  Olivia did exceptionally well on all our flights - she is quite the world traveler. ;)

An update on how everything else is going since bringing Olivia home...

Olivia has bonded to us SO well!  We feel so honored and blessed that she loves us so much.  We fell in love with her from minute 1, but we knew it would take her more time.  We hear that adoptive families do often struggle with attachment and bonding issues, but I must say that is one area that we have not struggled - even from the beginning.  Olivia almost instantly bonded with Danny and I.  This is not to say that she didn't grieve - but she took to us from the beginning.  We are so thankful for that.

Sleep - well, sleep is over-rated anyway, right?!?!?!  Sleep is one area that we CONTINUE to struggle with and have not had relief for the almost 9 months that she's been home.  I believe God allowed her to bond to us so quickly b/c I'm not sure people could deal with no sleep AND bonding issues.  We have tried EVERYTHING to get our sweet baby to sleep, but with limited or no success.  Our doctors up here don't have her background and they kind of blew us off and just told us what they tell everyone - that hasn't worked either.  I am convinced that it is still something medically related.  Since she can't talk yet - she isn't able to tell us.  Oh how I can't wait to her that sweet little girl's words!!!  Please pray for this area of our lives - it is hard on all 3 of us.  It doesn't seem to phase Olivia during the day though - she is just as active whether she's been up 2 times or 10.  Danny and I both feel like our bodies have been hit by trucks every morning when we wake up - we know it's just a lack of sleep and "this too shall pass".

Development - Olivia has been amazing to watch develop.  9 months ago we received a beautiful, but frail, little 12lb 15 month old little girl who had no teeth and still had a soft spot on her head. Her little legs were like limp spaghetti noodles and I could literally wrap her upper most thigh with my thumb to middle finger!  She had limited control of her head and zero ability to even sit up!!  We had to stack pillows behind her to hold her up while we were in China and then used a boppy once we got home.  Now - we have a true toddler running around with a laugh that could fill a room!!  She has made unbelievable progress in so little time.   Her legs are strong and so is she.  She is just over 21lbs and has 12 teeth.  We are so proud of her!!!  We beam like headlights when people get to see her - we are THOSE proud parents!!  One area that has yet to fully develop is speech.  It isn't that she doesn't talk - she does!!  Its just that - its not English - at least not any we speak down south :).  She jibber jabbers - just doesn't speak actual words.  We are now in the process of getting a speech therapist so they can help us work with her to help develop in that area.

Medical - her GI issues have greatly improved since her mal-rotation surgery just before we moved to PA.  She still struggles some, but not near as much as before!  We have noticed more of a blueish tint in her hands and feet a couple of times.  The first time it happened, it freaked me out and I called the cardiology doctor on call at CHOP.  Once they found out she was a single ventricle patient awaiting a Fontan procedure - they didn't seem overly concerned.  They said that sort of thing will most likely become more common leading up to her surgery.  She acted fine - was just a little blue for a few minutes.  I am thankful her surgery is still so far away, but will be happy once we get past that part.  I am so thankful there is a procedure that can be done, but obviously no parent wants to have their child go through what she will have to endure.  She is one strong little girl y'all!!!  She amazes us daily!

We can truly no longer imagine our lives without our precious little Bing Bing.  Oh yea - she fully responds to BOTH of her names :).  We still call her Bing Bing the majority of the time, but now she will turn if you say "Olivia".

I have a special post tomorrow - an AWESOME article that was done on the Bing!!  And then we will finally post some Christmas morning pictures!!  Sorry we are so far behind! :)