Monday

We thought we were going home today  but Teresa needed to have a pulmonary angiogram CT  .  We tried it without sedation but the Boss decided she did not want to lay still. So now it has been rescheduled for Tuesday morning with sedation  .  
The CT is being done to see why her left lung is only receiving 30% of oxygen . 

For the most part she has been doing really well .  She is tolerating the nightly feeds and Ed and I have been trained on how to administer them and insert the NG tube.   She does not like the NG tube  at all and has voiced her opinion that she IS NOT going home with it .   She doesn't want anyone to see her with it .

Today she really enjoyed the  arts and craft therapy session .  The art therapist came to her room and spent a lot of time with her . She loved it .  The therapist commented to Ed and I that she thought Teresa was  special and had a very engaging personality .  Teresa  also spent a lot of time with her wonderful nurse  while Ed and I were in "Class" to learn about the NG tube .  Apparently they had a very lengthy conversation about everything .  When the supply person came in her room to restock her medical supplies , she informed him that it was O.K. with her if he used her hand sanitizer and that he could come back and visit any time .  . She enchanted everyone she met today .

We also had a visit today  from a Blog friend and her two beautiful daughters  . Teresa loved visiting with them and showing them all  her special treasures that she keeps in her fabulous purse .

Hopefully if all goes well tomorrow we will be headed  home !

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 !