1st. Round or 2nd Round ?

Are you a 1st. round draft pick or 2nd round pick?

Not that I am a huge football fan but someone in our family is a huge football fan and has been very interested in the draft picks .  This made me think about how the players that were not chosen first felt . Did they feel any less a part of the team being picked second or third or even last ?

When I was younger I was always a second round ( well actually a tenth round or last pick )  when teams were being chosen for dodge ball or whiffle ball .  I was not the best batter for whiffle ball or the fastest runner in dodge ball  so I was always chosen last .  I remember thinking how unfair that was .  Didn't they know I had so much more to offer the team than how good an athlete I was ?  To them it was more important to win  the game.

On the rare occasion that I was team leader and could pick my team , I always chose the kids that were chosen last or not the best players athletically .  We never won a dodge ball game or whiffle ball game but we played harder and with more determination than the other team .  Sure they won, to them it was easy , but we had more determination    .  We  all knew we were the underdogs but it did not stop us .

This  "second round pick " was something that I always felt was unfair.  When we started our adoption journey I knew we would choose a child that was not a "first round pick. "   We wanted a child that would not be chosen first , one that was waiting longer , one that ...  had something deep inside that was not visible as being perfect .

By all means I do not think that healthy children are not deserving of a family .  ALL children deserve a family of their own .  This is just what works for our family .  There are over 143  million orphans in this world , ALL of them deserve to be loved and have a family !  And ALL of them deserve to be chosen FIRST .

When we were adopting Lucy our adoption agency told us about several children .  They all sounded wonderful .  But then they mentioned a little girl who had been waiting a very long time for her family to find her .  She had been shuffled between adoption agencies  , no one was too interested in her because of her medical condition and how she looked .  I knew before even seeing her picture she was our daughter .   Her photo was of a shy , tiny little crooked girl .  We were in love and could not wait to get her home and kiss her . 


 The same scenario happened with Emilia , she could not walk . No one wanted to make her part of "their team".  Gemma , her diagnosis scared so many, what could she bring to the team ? .  Teresa ,well who wanted to chose a child for their team that may not stay on the team for very long or help them to  " win" .  That's just it , they all had something to bring to the team that wasn't about winning " the game" .   The "win" was in the race and how we all ran the race .  All of our children brought their own special gift with them . They all had something our team was missing .

They all are helping us to   fight  the good fight,  finish the race and keep the faith.

Great Big Beautiful Tomorrow !

This past week we created so many  happy memories ...

Teresa loves to eat soup  .  So we made our famous crab soup .

Believe in Miracles also had a delicious fundraiser for Teresa.
THANK YOU  to all of our friends who came out to help support Teresa at  Sweet Frog !  We are so blessed to live in such a wonderful community .  Your love and support has helped us on this very long journey .

We played dress up and pretended we were getting married ...

We wore blue and green on National organ donation awareness day ...

And we went to the Circus underneath the big top tent !

Some times it is very difficult to "pretend " our life is "normal ".  As we go on 9 months of waiting for Teresa's gift of life it is a struggle most days to live as though there will be a happy tomorrow .  Having little "happy " things to look forward to has made it a little bit easier for the girls .

This has become our "new normal" for the past 9 months .  Waiting , hoping, praying and BELIEVING!
With GOD all things are possible .
Believe in Miracles !

Thank you to everyone for all of the continued prayers and support for Teresa!
We cherish all of your comments and love for our sassy, sweet and spunky little Miss T.
We BELIEVE there will be a great big beautiful tomorrow for Teresa !

Boston/CHOP

Boston Childrens Hospital sure has been hearing a lot about the Bartlinski girls lately .

After Teresa's last heart cath. and MRI in January we asked the the transplant team at CHOP  to send all her info. to Boston for  a second opinion .   Not that we did not trust CHOPs  recommendations , we just wanted to see if Boston agreed . 
Boston and CHOP are 2 of the best pediatric cardiac hopsptials .  The Doctors at both hospitals are amazing .
The transplant team at Boston agreed with CHOP and said Teresa's transplant would be considered very high risk but they also felt it was her only option .  I guess what I really wanted to hear was that she would do fantastic with the transplant and breeze right through it  without  any complications . 
The reality is a heart transplant for Teresa is very high risk but it is her only option .  A heart transplant is exchanging one kind of heart disease for another . It is not a cure .  Rejection is the first major danger following a transplant , second is coronary artery disease and third is cancer .  If she can beat all of these odds ( and I know with her strong desire to live life to the fullest she will )  she will have many happy years of life ahead of her   .  When I think of how far she has come ( from being told she would never be a candidate for a heart transplant and to just take her home and make her happy ) to where  she is now , waiting for a new heart , I am in awe at what God has done in her little body .  So even though Boston did not say she would breeze right through it we are still overjoyed that they did agree with CHOP .   Two years ago she had NO options . 
So as we continue to wait for Teresa's new heart we are treasuring every minute we have  together as a family  .


Little Miss Gemma Rose had her monthly blood transfusion Wed. and we finally received the results from her Ferriscan ( special MRI  that measures the iron content in the liver and heart ) that  she had  in February . She has this test  every year along with a liver biopsy .  (Gemma has Beta Thallassemia major .  A condition that is hereditary .  Her bone marrow does not produce healthy red blood cells and as a result she becomes severely anemic requiring blood transfusions every 3 weeks  .)  She will have to endure the transfusions for life or until a cure is found .  As of now the only cure is a bone marrow transplant .  A result of receiving so many transfusions is excess iron build up in the liver and heart .   Gemma's ferriscan results reveiled her iron levels are still dangerously high .  Her Hematologist has been trying for the past 4 years to lower them through different forms of treatment called Chelation .  Unfortunetly they have not been working .  So this past month Gemma's Doctor contacted Boston's  hematology team to discuss Gemma's treatment options .  Her Ferriscan results doubled from last years results putting her at a very dangerous level  .   
At this point we are unsure if her body is able to absorb the chelation meds. and effectively eliminate the iron from her body .  Boston performs  a  special procedure to measure the out put of Iron from the body but unfortunately Hopkins has never done this kind of testing .
The plan is to add a different chelation  med. along with increasing her daily infusion.  We also will see if the testing can be done at Hopkins and the information analyzed in Boston .   If she still has high levels  then she will have a port put in to increase her meds even more .  As a last resort if these other options are not effective  we will further discuss a spleenectomy  or bone marrow transplant .

Looking at Gemma you would never know all of this turmoil is going on in her little Budha belly .   To her life is one big rainbow ( her favorite color ) . She is one sweet little kissy face girl .

One thing we have learned through all of the girls medical conditions is that their diseases do not define who they are .  They are normal little girls who have ALL had to learn how to overcome diversity .  Their lives involve a few more Doctors appointments than most children but to them it is just a part of their week .  Gemma knows she feels better after she receives her blood transfusions .She also works harder than anyone to be able to speak correctly .  Teresa knows if she wears her oxygen she  feels better .  She  wants to have a new heart so she can ride her bike without oxygen and to also look like a real princess without having to wear  oxygen .   Emilia never believed she could not ride a bike because her legs do not bend .  She taught herself anyway.  Lucy does not let her size ( she is 1/2 the size of a typical  9 year old) stop her from anything . She believes she can do anything even with her little crooked body . Mary's job in the orphanage was to take care of the younger children  . I believe God gave her a very special gift, a caring heart for others  .  She is the kindest most caring little girl who works so hard to always help others .  She also works really hard to speak correctly and overcome her speech problems .  

After we had adopted Gemma and we were in the process of adopting Teresa someone asked us if we considered how her adoption would affect our other children .    They were worried that the children would also have to make great sacrifices  and it would affect their lives negatively .
I guess I always thought how could loving one more cause anyones life to be affected negatively .   God is love .  Love is God .
 All of our children will tell you that their lives have been changed .  Changed in a way that only God could change them ...through adoption .

God has allowed them to see things that most children will never experience in a  life time . Some of it is pain and suffering  and this has been very hard  at times . But through it they have learned kindness, compassion , carring, and most of all Love.  They know life is a gift , something to be cherished and never taken for granted .   They don't look at others who are different and ask what is wrong with them .  They know our differences are what make us who we are,  unique and perfectly created by God.

CHOP

Teresa had a great checkup today at CHOP .  All her tests (EKG. Echo. Blood work ) all came back unchanged .   The only bad news was she lost weight .  We are unsure how this happened since she is still receiving her nightly feeds through her NG tube .  So her calories will be increased .

After we were done we visited Evangeline .  What a sweet little girl ! 

Faith, Hope and Love

Faith, Hope and Love  and the greatest of these is Love.

Our Faith is what started us on this journey .  Hope is what has given us strength . A deeper unselfish  Love is what we have learned . 
This is what Love looks like to us ...

A smile means so much !

As Teresa waits for "Her New Heart " , God continues to open our hearts and teach us through her broken heart the meaning of Love .

Believe in Miracles !