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.