Our Last Summer

We are back from some much needed rest and relaxation ( AKA- vacation).   Our energy level was very low and we were in great need of having our spirits re -energized .   It was so nice to be able and spend some time with Paul and Meg.  Because of their school schedule we only get to see them once or twice a year .   The girls love spending time with them  .  Alex and Taylor also spent a few days with us relaxing .

On our way home from vacation we met with an amazing family .  Their daughter ( Rachel) is also waiting for a heart transplant .   It was so nice to talk to another family who is going through the same situation as us .  Their strength and courage was very inspirational .  I know God puts people in your path to help lift you up on your journey and for us this was just what we needed !


We also stopped to see Ed's twin brother Jim and his wife Amy and their three children  ( they also have a daughter from China .  Hope, is actually from Mary and Emilia's province , Hubei ) .  Teresa  wasted no time makig herself feel at home and playing dress up .  She LOVED being a southern Belle .

We are now back to reality .  I have to say the escape from reality was actually REALLY nice .  We had no Doctors calls, Doctors appointments , blood transfusions , surgeries ...  It felt really great to just "BE".     Now we have to pay ... this week we have 8 Doctors appointments and Gemmas blood transfusion .. Friday all 6 of the girls and I will travel to Philly for Teresa's monthly check up and testing .  We will be meeting with the transplant team and Child Life to discuss the transplant procedure in more detail to the girls .

I can not believe summer is almost over .  In less than 2 weeks all of the girls will start school .  I really love having them all home,  but for the first time in 26 years , I will be childless for 4 hours each day . ( Teresa is starting kindergarden with Gemma but will only go to school  half a day because of her health ) .  So I  will have  4 hours to myself , I can hardly stand the wait !

Here are some photos of our VERY  WONDERFUL summer . It went by way too fast !  Praying God will bless us with another wonderful summer next year and  ALL of us together !

Team Teresa !

We had a VERY busy week , 3 Hospitals,  4 Doctors appointments and 3 orthodontic appt.  . Oh and a two day lacrosse tournament in Delaware !  

Everyone is doing well .  Emilia's arm is now 4cm longer .  We will stop turning the fixator in Aug.  .  She will hopefully have it removed in November after the bone fills in .

Gemma  did very well with her blood transfusion .  She seems to be holding her own for 3 weeks before needing to be transfused again .  We tried pushing it to 4 weeks again but her hemoglobin dropped too low with the additional week .

Teresa's appointment at CHOP also went well .  All of the girls are going to come with us for her next appointment in Aug. so we can meet with the Child Life team . The girls will tour the hospital and see where Teresa will be recuperating and then they will discuss the process of transplant .  Child Life will answer any questions the girls may have .  Even though we have already talked to them about Teresa's new heart,  I think it will really help   to have it explained by the team .

This tuesday night we will be meeting with some wonderful  friends from our church and community . A  very caring member of our church  (MaryAnn), has organized  "Teresa's Team ". If you would like to be a part of "Teresa's Team "  or come to the meeting ,  send me an email and I will pass it along !  
Mary Ann has been a HUGE blessing to us !
Here is her email with all of the information .

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Hello my Co-Travelers on our way to Heaven. We have just been Blessed with the opportunity to volunteer to be members of "Teresa's Team of Helpers"

I'm MaryAnn Manning and I'm establishing a Steering Committee to brain-storm ideas to assist the work of God in "Thy will be done on Earth as it is in Heaven" with Teresa "Fang Fang" Bartlinski.

Please join us on July 24th at 07:00 PM in the meeting room downstairs in the Catonsville Library.

The total agenda of this meeting will be brain storming ideas of ways we can assist this family for the next 6 months and beyond according to God's plan.

Please reply to this e-mail as soon as possible. I'm currently in search of a small group of friends to design a plan of action to complete this Blessed opportunity.

Thank-You in advance, you are now Blessed as a member of "Teresa's Team of Helpers".

We want to thank you for your Prayers, Love and Support in Believing in Miracles with the love of God! 

 

MaryAnn Manning

 

 

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Without the help of our church,  community and friends  we would not be able to make this journey to Teresa's new heart . This journey is VERY heavy  and much more than we could ever carry ourselves .  God continues to bless us with angels along the way to help us .  Saying  "Thank You " just doesn't seem like enough . I  love the way MaryAnn put it ... We are ALL Co-Travelers on our way to heaven .    How amazing is that !

Living on The Edge

Our family is yet again adjusting to another "New Normal".  Living on the edge...  waiting , wondering, hoping, praying and  ready to RUN to Philadelphia .

Our life is filled with a LOT of stress right now as we prepare for Teresa's heart transplant BUT it is also filled with hope and for this we are eternally grateful  !

The girls enjoyed Vacation Bible School at our church this week . We also have been spending a lot of time just hanging out at our community pool , soaking up every minute of summer time .  Since our future is about to change drastically , we are trying to enjoy every second of each day together .  Playing dress up is Teresa and Gemma's favorite thing to do .  They must change at least 10 times  each day into different princess outfits.

We met with a member of our church today who  is organizing help for us ( caring for the girls and meals), while Teresa is in the hospital .  It is very humbling having to ask for so much help .  If we had the funds we would simply hire a full time nanny , but that not being the case , we have learned yet another lesson in humility .   If you are local and would like to be added to "Teresa's Team of Helpers",    please just send me an email and I will pass your name along to the team .

As part of a fundraising effort to cover medical expenses, travel back and forth to Philly and lodging while in Philly we are giving out inspiration bands for a donation of $2 .00 each .  They are red and say -BELIEVE IN MIRACLES   -  TERESA -
If you are interested please email me .

Wednesday we will venture back to Philadelphia for what will now become a monthly trip  .  Once  a month Teresa will be thoroughly evaluated to make sure she is not slipping further into heart failure . If this happens then her status on the transplant  list will be changed to a 1A (top of the list ).   For now she is enjoying summer time , princess tea party's , dress up , swimming, catching lightening bugs, snow balls, and being a princess.  Life doesn't get much better than that !

Thank you to EVERYONE for your continued prayers, love and support.  There is no way we could do this alone .

Summer Fun !

Gemma and Teresa had their first friends Birthday party .  We combined the two of their Birthdays  ( Teresa -December 25 and Gemma Aug. 31) .  It's almost impossible to have a friend birthday party in December so we had a pool Birthday party for the two of them .  They LOVED it !

Moving Along...

Things are moving along wonderfully .  Our insurance has APPROVED Teresa's heart transplant !   This was a big concern  but as it turns out God took care of all the details !

We are still working on transportation to the hospital .  We are working on a few options . The transplant team suggested we move closer to CHOP but with six  kids at home   , this was not an option .  I know God will work out these details also.

The social worker from the transplant team called today to see how we were handling the stress and I had to laugh as she asked if we were having any anxiety .  Well yeah !!!!    Our biggest anxiety right now is care of the girls and how to keep their lives as normal as possible while I am gone .  Before we adopted Teresa we had several  family meetings with all of the kids to discuss how our lives would change and how they felt about the huge sacrifices they all would have to make .  They all were so sweet and caring  saying they would give up this... or give up doing that... or going there... and over the past two years they have all been phenomenal with their love and support of  Teresa and all her  medical care .    But the journey we are now on will require even more sacrifice for them and we really want to try and keep things as routine as possible at home for them  . I know God has opened their eyes and hearts   to so much already  through Teresa.

I have started packing so we are ready to leave as soon as we get the call and I am also  making lists... and more lists... so the care of the girls will be as smooth as possible while I am gone . 
With the best case scenario (which is what we are praying for ) , Teresa will be in the hospital for one month .    But because she is considered HIGH  risk and may have complications we could be in the hospital for 6 months. There really is just no telling what could happen or how long we will be there .  So  we are trying to prepare for everything .   With Teresa's STRONG will  though I am sure she is going to run the race and show them all just how well she  can do  and be home in Miraculous time . This girl LOVES to be home and with her sisters.
I have packed a little suitcase full of goodies ( nail polish , lip stick , jewelry, princess stuff,  all kinds of girlie bling that she loves )  so as she is recovering she will be able to pick something special out of the suitcase to help motivate her and keep her moving forward  with her recovery .

Trying to adjust to yet another "normal", as we wait , has left us a little frazzled.  But it has also left us with a new hope for a miraculous life for Teresa.   Thank you God for leading us on this journey , even when I complain  and am totally overwhelmed, you have always  given us strength  and wisdom to carry on .

LISTED !!!!!

A MIRACLE has occurred  !   Two years after coming home from China with Teresa ,  we have the MIRACLE we have prayed for .   Two years of being told by several different Doctors  that it would take a  MIRACLE for Teresa to be listed for ONLY a heart transplant has occurred .

TERESA IS BEING LISTED FOR A HEART TRANSPLANT   !!!!!!!!!!

Words can not fully describe the joy we feel .

For Two years we wrestled with the hopelessness that the world had to offer and clung to the hope only Jesus could give .

Two years ago before we started Teresa's adoption we met with our Pastor to discuss if this was Gods Will.  His advice to us was ,
"The Will of God will never lead you , where the Grace of God will not protect you ".

This morning we met again with Father Whatley to discuss Teresa's MIRACLE .  He reassured us of  the miracle of Teresa's life .  God is using her life to touch others ...

Next week we will find out if our insurance will approve the transplant  then we will  start  the wait .  Teresa will be listed as a 1B.  1A is the most critical  then 1B then 2. 

A few (well actually a lot ) of other details need to be worked out also as to how we will be able to arrive at CHOP within 1-2 hours . We are 2 hours without any traffic and leaving from our home .  We have also started the process to find help with the care of the girls while I am gone .  Our Church is awesome with the amount of help they are offering !

As we start yet another journey on this amazing  path God is leading us , we  are so VERY grateful to everyone  for praying for  Teresa !   The power of prayer and love can move mountains !

Waiting

We are waiting ...  We arrived home this afternoon  after a very long three days.

Thursday morning Teresa and I drove to Philly for pre op testing .  After a long day we checked into the Gift Of Life House .  We were hoping to stay  at The Ronald Mc Donald House but they were completely full.  The Gift of Life House is specifically for transplant families ( adult and child transplant ).  The House is amazing with all the amenities of home .  Every night volunteers come and prepare  a home cooked meal for families staying in the House .  It was delicious and provided one less thing to worry about . We met some very courageous people while there .  All of whom are waiting for a transplant .
Friday Teresa had an MRI and heart Cath..  She was so brave , not even crying when her IV was started .  She actually helped the nurses to do it . They were very impressed with her calm state .

After the cath .  we spoke with Dr. Hanna about the results.  I was praying that the results would be very clear and provide a very decisive prognosis .  Dr. Hanna was very optimistic and felt she should be listed for a heart and that she would have a good chance of surviving .  Her pulmonary pressure was still over 30 and her PVR( pulmonary vascular resistance ) was 3 .  Both these numbers are not optimal for heart transplant but Dr. H feels its all about the flow .  At this point it was becoming very difficult to follow the tremendous amount of information and details so I had to rely on his level of expertise and trust his decision .   He feels she would survive a heart transplant .  She will struggle the first few days as the new heart battles the extremely high pressure in her lungs .  The fear is the right ventricle will start to fail because of these high pressures but he thinks with medicine she should be able to over come this and after a few days stabilize .
Now we must wait as the transplant team reviews all of the data and makes their decision . 
We should know their decision by the end of next week .  Once again we find ourselves waiting and praying for a miracle !

I have to tell you how grateful we are for all the heart felt comments and prayers for Teresa . She is an amazing little girl with an iron will for life .  We feel very blessed to be able to share her story with everyone .  Your prayers are all part of her miracle for  life !