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.