Saturday, June 30, 2012
Summer Fun !
Friday, June 22, 2012
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 .
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 .
Tuesday, June 12, 2012
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 !
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 !
Saturday, June 2, 2012
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 !
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 !
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