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 !
Sunday, May 27, 2012
Great Time with Great Friends
We had our dear friends come to visit us today from Florida ( they also happen to be Grace's Godparents ). We always have such a great time with them and the girls really love all the goodies they bring them from Disney World ( Louise works for Disney ).
This week will bring many changes to our family . Mayzie is coming to live with us permanently . Emilia is beyond excited . Mayzie helped her so much this past week with her surgery . She has handled the recovery much easier with Mayzie by her side (or in her case actually in her hospital bed with her ).
Mayzie had lots of visitors while in the hospital . Not only did she bring happiness to Emilia but also another little girl having surgery .
Gemma will have her next blood transfusion on Thursday . The week before her transfusions she becomes very tired . It is such a balancing act with the transfusions (which make her feel better ) and the iron overload that comes with more transfusions . If we transfuse sooner , she feels better but in the long run she receives more iron and the iron is already starting to affect her liver .It has been such a slow process with her daily infusions trying to lower her Ferritin levels which are still EXTREMELY high . Today she was so tired she fell asleep while eating . Anyone who knows Gemma (AKA - Buddha Belly ) knows she LOVES to eat and for her to fall asleep while eating was not a good thing .
On Friday we will finally know if Teresa will be listed for a new heart . The waiting has been VERY stressful . I wish I could say it has been easy but it hasn't . I am worried about her being under anesthesia for twice as long this time because she will also have an MRI along with the Heart Cath. . We have moments of peace and hope but then the worry creeps in filling my mind with doubt and fear .
If you could find the time to say an extra prayer for Teresa this week and especially on Friday morning we would be very grateful . Please help us to have a miracle on Friday ! Without sounding too pushy ( OK I am going to be pushy ) PLEASE ASK EVERYONE YOU KNOW TO PRAY FOR A MIRACLE FOR TERESA ON FRIDAY !
Thank you !
This week will bring many changes to our family . Mayzie is coming to live with us permanently . Emilia is beyond excited . Mayzie helped her so much this past week with her surgery . She has handled the recovery much easier with Mayzie by her side (or in her case actually in her hospital bed with her ).
Mayzie had lots of visitors while in the hospital . Not only did she bring happiness to Emilia but also another little girl having surgery .
Gemma will have her next blood transfusion on Thursday . The week before her transfusions she becomes very tired . It is such a balancing act with the transfusions (which make her feel better ) and the iron overload that comes with more transfusions . If we transfuse sooner , she feels better but in the long run she receives more iron and the iron is already starting to affect her liver .It has been such a slow process with her daily infusions trying to lower her Ferritin levels which are still EXTREMELY high . Today she was so tired she fell asleep while eating . Anyone who knows Gemma (AKA - Buddha Belly ) knows she LOVES to eat and for her to fall asleep while eating was not a good thing .
On Friday we will finally know if Teresa will be listed for a new heart . The waiting has been VERY stressful . I wish I could say it has been easy but it hasn't . I am worried about her being under anesthesia for twice as long this time because she will also have an MRI along with the Heart Cath. . We have moments of peace and hope but then the worry creeps in filling my mind with doubt and fear .
If you could find the time to say an extra prayer for Teresa this week and especially on Friday morning we would be very grateful . Please help us to have a miracle on Friday ! Without sounding too pushy ( OK I am going to be pushy ) PLEASE ASK EVERYONE YOU KNOW TO PRAY FOR A MIRACLE FOR TERESA ON FRIDAY !
Thank you !
Saturday, May 19, 2012
June 1, 2012
June 1, 2012 , this is the day that we will find out if Teresa will be listed for a new heart.
It's hard to believe that after almost 2 years of searching and trying to find some sort of hope or a cure for Teresa's heart and lungs we will finally have a answer . On May 31st. Teresa and I are traveling to Philly for pre op testing and then very early on Friday June 1 she will have a cardiac MRI followed by a heart Cath.. She will spend one night in the cardiac ICU and we will return home on Saturday .
We are praying for a miracle but are at peace with Gods Will should it be for her not to be listed.
The 2 years we have spent searching for a cure and researching everything there is to know about Teresa's heart condition has left us ultimately right back where we started from , totally dependent on God for an answer . Yes , the Doctors will perform the tests and give us their conclusions , but ultimately it will be up to God . It will be a miracle if Teresa can be listed for a heart since this is what we were told 2 years ago by not one hospital , not even two hospitals but MANY .
I know God has great plans for her life , however long it may be . It will be to glorify Him .
This weekend Teresa was able to cross off one more thing on her ( well actually our ) list of Life's Treasures. This is a list of things that every little girl should experience in her lifetime .
Today Teresa ( and Mary and Lucy ) had their dance recital . Teresa absolutely LOVES dance class and for one year she has been looking forward to this day . The make up , hair , costume , was all too much for her to take in . The excitement she felt today preparing for the recital was so sweet . She couldn't stop admiring herself in the mirror all morning . We were so happy for our tiny dancer !
Miss Lisa ( the girls dance teacher at Turning Pointe Dance Studio) gave Teresa a gift today that was priceless ! Thank you Miss Lisa for making another one of Teresa's dreams come true ! We are so grateful to you !
This week Emilia will have her second surgery on her arm . Please pray for her as she has been having a lot of difficulty adjusting to the fixator and the size and weight of it all . When she had the fixator on her leg two years ago she did so much better . I'm not sure why the change in her but we are praying she will start to have an easier transition since she will have it on for another 6 months . Mayzie definitely helps when she is here , her whole attitude and outlook changes . Luckily Mayzie is coming to the hospital on Wed. and then will come to live with us permanently the following week .
We would be so very grateful to everyone if you could join us in praying for a HUGE miracle on June 1 for Teresa .
To all of our friends , adoption community and Internet friends who we only know from your kind words, we are so thankful to you all for all of your support and help in spreading the need for prayers for Teresa.
"Where there is great love , there are always great miracles "-Mother Teresa
It's hard to believe that after almost 2 years of searching and trying to find some sort of hope or a cure for Teresa's heart and lungs we will finally have a answer . On May 31st. Teresa and I are traveling to Philly for pre op testing and then very early on Friday June 1 she will have a cardiac MRI followed by a heart Cath.. She will spend one night in the cardiac ICU and we will return home on Saturday .
We are praying for a miracle but are at peace with Gods Will should it be for her not to be listed.
The 2 years we have spent searching for a cure and researching everything there is to know about Teresa's heart condition has left us ultimately right back where we started from , totally dependent on God for an answer . Yes , the Doctors will perform the tests and give us their conclusions , but ultimately it will be up to God . It will be a miracle if Teresa can be listed for a heart since this is what we were told 2 years ago by not one hospital , not even two hospitals but MANY .
I know God has great plans for her life , however long it may be . It will be to glorify Him .
This weekend Teresa was able to cross off one more thing on her ( well actually our ) list of Life's Treasures. This is a list of things that every little girl should experience in her lifetime .
Today Teresa ( and Mary and Lucy ) had their dance recital . Teresa absolutely LOVES dance class and for one year she has been looking forward to this day . The make up , hair , costume , was all too much for her to take in . The excitement she felt today preparing for the recital was so sweet . She couldn't stop admiring herself in the mirror all morning . We were so happy for our tiny dancer !
Miss Lisa ( the girls dance teacher at Turning Pointe Dance Studio) gave Teresa a gift today that was priceless ! Thank you Miss Lisa for making another one of Teresa's dreams come true ! We are so grateful to you !
We would be so very grateful to everyone if you could join us in praying for a HUGE miracle on June 1 for Teresa .
To all of our friends , adoption community and Internet friends who we only know from your kind words, we are so thankful to you all for all of your support and help in spreading the need for prayers for Teresa.
"Where there is great love , there are always great miracles "-Mother Teresa
Saturday, May 5, 2012
Patience is a Virtue
What a crazy week we had . A few days after coming home from the hospital with Emilia , she decided to take apart the fixator. During the night she unscrewed almost all of the nuts and bolts holding the fixator together. The next morning we found nuts and bolts EVERYWHERE and she was not talking . It seems she became a little bored and thought it would be cool to unscrew everything .
Luckily she did not do too much damage and everything was able to be re attached . We have since put the fear of Dr. Standard into her (along with a few other fears to keep her from touching it again ). Dr. Standard actually thought this was pretty funny since they have never seen a child do this before. He said the saving grace was that the ulna was not surgically seperated yet and this this prevented her from being in excruciating pain . ( the first phase of the surgery was to seperate the distal radius and reposition her hand . Phase two will take place on May 23 to seperate the ulna and start the lengthening process).
So far so good . She has not attempted to touch her arm at all ! ( Alex is studying to be an orthopedic surgeon so Doctor S. said it would be OK for him to shadow at Emilia's next surgery . He will also spend a month shadowing in the clinic and other surgeries. The surgeries Dr. S does are very complex and unusual , so Alex is very excited to see procedures he would not be able to observe elsewhere.)
Thursday, April 26, 2012
Arts and Crafts
Emilia is doing great ! Today we did arts and crafts . Duck tape bows and bead bracelets for the fixator. A little physical therapy too...
Subscribe to:
Posts (Atom)
