CHOP day 3

  Teresa and I spent the day having a manicure ...well 8 manicures  because a princess always has to have pink sparkly nails !

Doctors are  optimistic that we will be able to proceed with the heart transplant although it will still be VERY high risk . We will have the final  results hopefully by Monday night .

These  are a few photos of the past few days .  We stayed at The Gift of Life House on Wed. .  Teresa loves staying there because it has a big playroom full of toys .  We met a little girl from Florida waiting for her transplant .  They have been living at the house for a month now. Teresa was immediately attracted to her when she noticed the  sparkly  shoes she was wearing .  

CHOP day 2

Today Teresa had a much better day .  She is definitely back to being the boss and helping with all procedures .

We still do not have the total results back from the Doctors .   They seem to be optimistic but are waiting to discuss the results together .

Tonight Teresa started her feeds.  They are starting out very slowly to see how she tolerates them .  If all goes well , by Monday she will be up to her calorie count .  Hopefully we will be home then .

Thank you for continuing to pray for her !

Chop

Thank you for praying for Teresa . It has been A very long day . She did very well with the cath. And has only tried once to pull out the feeding tube . We will have the results of the cath and MRI tomorrow and will discuss the options with the transplant team .

Concern

There is real concern that Teresa's pulmonary pressure has increased .  This is why she is having the cath. and MRI on Jan. 24th.  .
After speaking with the transplant team , we decided to put Teresa's status on hold for 7 days  until we can reevaluate the condition of her lungs after the cath. on Thursday .

For a heart transplant to be successful it is very important that the pulmonary pressure is low and the lungs are functioning well.   Teresa has always been considered high risk because although her pressure had come down slightly it was still high and her lungs were still damaged.  Now the fear is the pressure has increased and this would cause a new heart to go into right sided heart failure .  It is very difficult to live in right sided heart failure and have a good quality of life .  This would be worse than her living with the broken heart she has now.

A heart transplant  ( if successful and  with out any heart failure) , would give Teresa ten years before she would need another heart transplant . (Ten years is the average life of a transplanted heart ) .  If we do nothing and go on with the broken heart she now has , it is unknown.  She could have  one day or a few years.

Part of me wants to BELIEVE  God has brought her this far, and she is such a fighter  , that she will do just fine with a transplant . And then part of me is full of fear not knowing which way to turn .   Do we give her quality of life or quantity  ?  From day one we have always wanted both . We have tried to fill everyday with the best quality of life for her and pray that God would give her quantity of life .

On Thursday we will have to decide the best path for Teresa based on her cath. results.   We are praying   that she will have phenomenal  results from the cath. and MRI   and we will be able to proceed with the heart transplant .  We are praying God will clearly show us His decision and that we will have peace with it .
 Still praying for a miracle !

                                                            BELIEVE

(This is my favorite picture of Teresa . It was taken on her adoption day in China .  She was sitting by the door holding her one and only possession , her panda bear , waiting for her family to come take her home .   She  BELIEVED we would come  !)

January 24th.

Today  Teresa received another heart offer . Unfortunetly it was still not a perfect match for her .
So we continue to wait .  
We also found out today  that Teresa will have her Heart Cath. , feeding tube and MRI on January 24th.  .

Vision of Heaven

Over the past 2 years we have received numerous emails from people who met Teresa in The Half The Sky Orphanage .    Some were there volunteering , others were there visiting the Orphanage. But everyone that met Teresa was captured by her amazing personality .
I thought I would share a few of their stories with you and how Teresa touched their lives .

One family met Teresa while they were visiting the Orphanage -

"We will all never forget the little "attitude" of this tiny person.

I will always remember her leaning against the wall with one hand, clutching a small panda bear with her little hand, legs crossed while she was giving some other child a tongue lashing, turned and marched off."

This family was touched by Teresa's personality and spunk .  They go on to say that meeting Teresa made them realize there may be another child destined to be in their family and that she  "opened the window" for this calling.

   "We owe , in part,our daily joy with our daughter to Liu Fang (Teresa). 

The funny thing is , this tongue lashing still continues today .  Except now in English . Teresa is one driven little girl who knows exactly want she wants  .

Another person wrote me a while ago telling me of her experience while volunteering in the Half The Sky orphanage;

She tells how Teresa  became her friend .  She was shy at first but quickly earned her trust .  The two of them spent most days playing and were inseparable.  

 She also was enchanted by Teresa's personality . 

The common feeling by all who wrote us to share their story of Teresa is how amazing she was and how she captured their attention with her magical personality .

Her "magical " personality was also how Jenny Bowen (Founder of Half THe Sky ), described her  .

We knew from the moment we met Teresa that she was different .    Some say she is "an Old Soul", able to comprehend more than her years. Others  have said she has a "sparkle" about her , very loving and compassionate  . And to be honest some have had no desire to get to know her further when they see her "Sassy " side .  And for  them I feel sad that they did not look  deeper and get to know her .

For us , her strong desire to have a family and totally embrace  everyone melted our hearts.  She has an ability to understand situations (her heart condition, wanting a family , orphans, heaven , Jesus,) on a level not typical for a 6 year old.  A few weeks ago we were talking about Heaven and Gemma said when she gets to heaven she was going to eat chocolate all day long .  Teresa waited a minute, as I could tell she was thinking, and  said" Well when I get to heaven , Jesus said I could wear my wedding dress and pick flowers all day long and not get in trouble ". ( She LOVES flowers and all summer was constantly picking the flowers in my garden  and getting in trouble for it ) . I asked her when Jesus had told her this  and she said " the other day ".      Most days she is a typical 6 year old playing dress up , demanding someone else be the prince because she was going to be the princess, picking her favorite song to sing on the karaoke machine and  deciding what we all should have for dinner  ( of course her first pick is ALWAYS Chinese noodles).  Her favorite word is "FABULOUS" and her favorite  color ,you guessed it , PINK.  The more her clothes sparkle the better . 

The one experience that really shows Teresa's personality and her Iron will to overcome all her obstacles , succeed and to never give up is the video of her learning to stand for the first time by herself.

The first time I watched this video  I cried because she was struggling to get up and she kept looking for someone to help her.  But no one helped her , she had to learn how to do it on her own .  Not having two arms to push up with she figured out that she would have to put her bottom against the wall, use her arm and her head  to push up  and using the wall for balance.  She eventually did it all by herself and gave everyone the "thumbs up " for succeeding !

This is who Teresa is .  She still never gives up with anything she tries. She never takes no for an answer. She has an iron will to live and continues to defy  all medical odds.  She never asks "Why Me?".  She enjoys all life has to offer  and can not wait for the day when she can wear her wedding dress and pick flowers all day long with Jesus .   

 

Happy New Year !

Happy New Year !
This year we were home for New Years Eve..  For the past two New Years we have been in the hospital .  Last year Teresa was in the Hospital and the year before I think it was Lucy .  We were so happy to start a new year at home and with our family .

Not much is new , we are still waiting for Teresa's Cath. to be rescheduled .  Yes, it has been two weeks and still no dates .   Because of her complex health a lot of planning has to go into scheduling all of her procedures...
We are also still waiting for "The Call". We were so grateful to spend Christmas at home and celebrate Teresa's 6th. birthday  but the waiting is really starting to affect everyone's emotions .  So many   months of living out of a suitcase , planning every minute of everyday making sure we have a plan for when and if we get the call is very nerve wracking  .  I think even the dogs are sensing the stress .
It seems we are doing a lot of waiting .  Waiting on Gods time for everything to happen .


Teresa continues to be feeling well  . She managed to stay free of all the nasty viruses the other girls had.

Emilia had her cast turned into a removable cast , one  that she can take off for bathing and physical therapy . Two more months and she will have the rod removed and finally have her new longer , straighter arm .
Paul and Meg went back to Atlanta for school .  The girls are missing them already , especially their two dogs (Dewey and Daphne). It was wonderful having all the kids home together for Christmas.  The best gift of Christmas ...family !

Santa

Guess who stopped by tonight ?  
The girls heard a commotion outside and ran to the front door to see what it could be .    Santa was outside of our house on his motorcycle sleigh .  We had met Santa a few weeks ago at The Ronald McDonald house and he  decided to pay us a visit .  What a welcome surprise .  The girls were very excited .  Gemma was already telling him what she wanted for next Christmas.  Apparently Santa forgot her new doll ...(oops).
There is never a dull moment around here  . Sometimes I wish there was but not this week . We had lots and lots of Doctors visits.  I believe everything happens for a reason . When Teresa' cath. , MRI and feeding tube were canceled for Friday because of her cough and also there was not a bed in the CICU to recover in ( she was going to have to recover in the ICU )  I felt it was happening for a reason .  
The reasons : Gemma has bronchitis , Mary has the  flu and Lucy  ended up in the Hopkins ER last night with a very bad asthma attack and Pneumonia .
  Not exactly the reason I was hoping for but Santas visit made everyone feel a whole lot better !
By Gods grace , Teresa has miraculously avoided all of these viruses .

Canceled Again

Unfortunately Teresa's Heart Cath. , MRI and feeding tube scheduled for today had to be canceled .

Yesterday after having the echo., chest x-ray and EKG, her Doctors felt the LITTLE cough that she had could possibly alter the results of the cath. negatively .  They do not want to take any chances ,  so we were sent home to wait .  Everything will be  be re scheduled in 2 weeks and we will try again .

The good news is we will be home for New Years Eve.

Merry Christmas and Happy Birthday !

Merry Christmas !  We hope everyone had a very blessed Christmas . 

Thank you all for the Birthday wishes for Teresa.
She celebrated her Birthday  and Christmas  together .  Her two favorite gifts were her pink baby grand piano and a dream lights pillow . 

Thursday we are heading to Philadelphia for pre op testing and then on Friday morning  Teresa will have a heart catherization , MRI and feeding tube placed .

Please pray for positive results from the cath. and a very easy transition to  the feeding tube.  In the past few weeks Teresa has become very self conscious about her little arm and wearing her oxygen .   When other children ask her about her arm she always tells them that's just how Jesus made her .  But she really wants to be the same as all of her friends.

Teresa's Story

 http://video.today.msnbc.msn.com/today/50288556


http://todayhealth.today.com/_news/2012/12/24/16111223-one-familys-christmas-wish-a-healthy-heart-for-teresa?lite

Program update

"Teresa's Story " will air Monday at 7:40 am on The Today Show .

"Teresa's Story "

We want to share with everyone some amazing news that has been happening in Teresa's life.

A few months ago our Immigration Officer asked us to send her an update on Teresa. (  Who by the way is an amazing person.  Cindy was monumental in helping us to bring Teresa home from China very quickly .  I hope one day to be able to thank her in person and give her a big hug. )    Teresa's  update was shared  in The Immigration News Letter.   They then  shared her story  with The Baltimore Sun Newspaper  and this Friday (December 21)   Teresa's story will be on The Today Show .

Teresa will be 6 on Christmas Day  and her life has touched thousands of people all over the world .   Her magical personality and iron will to face all of the challenges in her life have touched many people .   She  has been an inspiration to so many facing medical problems of their own .  She has led many back to their faith by showing how much she loves Jesus and wanted to " Marry " Him on her First Holy Communion Day .  She has also led many families to adopt "Special Needs Children"  , showing them that  there is no fear in adopting a "special Needs"  child , only LOVE .

God has used her life to touch so many already .  We now hope that her life will also  bring more awareness to the  tremendous need for organ donation .

We also hope that Teresa's Story will touch other peoples hearts and they will  help us to pray for a MIRACLE.

"Where there is great love , there are always great miracles."  Mother Teresa

The Boss

The Boss is back!

Teresa bounced back with renewed energy and vigor from the trial run .   She is so resilient it amazes me .  Life is back to as normal as possible as we anticipate the arrival of Santa and someone very specials 6th. Birthday on Christmas !   Teresa  is so happy that she shares her Birthday with Jesus .

Teresa is scheduled to have another Heart Catherization , MRI and feeding tube within the next two weeks.  We do not have the exact date yet but we are praying for really good results .( Low pulmonary pressure, low Pulmonary vascular resistance).   We have tried to get by with out the feeding tube but it has been a never ending battle .  She has not gained weight in over a year.

All the girls are doing great also .  Emilia had the external fixator removed and  a  rod inserted for stability . She loves her new Christmas cast . 

Gemma is back to having her blood transfusions every three weeks again ( 4 was too long) .  Her daily infusions have been increased also to 7 days to try and remove her VERY elevated ferritin levels .

We would be so appreciative of prayers for Grace , Mary and Lucy .   The stress of  Teresa's Heart transplant has been very hard on them these past two weeks .   They are old enough to realize the enormity of everything happening  . They have had to make a lot of sacrifices lately .

We hope everyone is enjoying this joyful Christmas time with your family !

All of our children will be home together on Saturday . (Paul and Meg are coming home ). Life doesn't get better than that !

Home

Memorable Days .  The day we were married , the birth of our children and the adoption days of our daughters  are all memorable days filled with joy , love and happiness . I can remember every moment of each one of these days.  The day Teresa receives her new heart will also be one of the most memorable days in our life . 

Thursday night at 10pm.  the phone rang .  All the girls were asleep except for Grace and Lucy ( they are my night owls ) . Ed had answered the phone and came running upstairs to tell me that the transplant coordinator was on the phone and Teresa had a heart .   The preliminary ultrasound looked good and it seemed to be a good match . She wanted us there as soon as possible because Teresa would need to have a procedure (plasma phoresis ) to remove her blood and filter it through a machine to remove any antibodies she may have that could reject the new heart .
Luckily everyone was home  . This would save us a lot of time .  Our bags were already packed so Ed loaded them into the car  .  We called our two sons and daughter in Law and they were at our house within 20 minutes  to stay with the girls. Everything was moving along as planned.   The only thing we did not factor into this was the reaction Grace and Lucy would have at this moment .  We thought we had prepared all of the girls for what was about to occur but the fear of  this moment really upset them and we needed to spend extra time reassuring them that everything would be all right .

As we drove to Philly , Teresa was asleep totally unaware of the enormous change about to occur in her Life.  We luckily did not run into any traffic and arrived at the hospital shortly after 12 am. . We awoke Teresa and explained to her that tonight she would receive her new heart .  She was very excited because to her receiving her new heart means she will be able to ride her bike with out wearing her oxygen .( she wants a new bike for Christmas so she was VERY excited ). 
As we entered the CICU things moved very quickly .  She was prepped and intubated for the plasma phoresis.   We were told the transplant would happen after the phoresis was complete early in the morning .   Shortly after 3 am.  Doctor Rossano asked to speak to us in the conference room .    He appeared very disappointed.  He said he was very sorry but after the Doctors had examined the donor heart it appeared not to be a good match for Teresa.   At that moment I don't think Ed or I knew exactly how to react .  I could not imagine having to go through all of this again but at the same time we did not want to take any chances with a heart that was not strong enough for Teresa. 

The plan was to stop the phoresis and slowly wake Teresa up .

The next morning after Teresa woke up she looked down at her chest and asked where her new heart was . With suggestions from  child life on how to explain this to her she slowly understood and said "OK.. , I'll wait  for my new heart to be strong ".

This experience is something that is so very difficult to go through and now we will have to do it all again very soon .  We did not want Teresa or the girls to see or feel any fear from Ed or I so we were very calm . I just pray that the next time it will be a little bit easier emotionally .

Teresa has done very well the past 3 days . She is back to being " The Boss".  Ed and I on the other hand feel as if we have been run over by a truck .

Thank you to all Teresa's prayer warriors for continuing to pray !  You all mean so much to us !