Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical ‘ meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.

Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical ‘ meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.

Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical ‘ meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.

Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical ‘ meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.

Olivia came home from the hospital last Thursday afternoon and has been doing well and staying very comfortable. Unfortunately there have been some new developments that have put us on a new path in Olivia’s journey. This recent hospitalization was not caused by any infection (the last number of times she’s been in the PICU it was because of pneumonia); rather, it was more of what her doctors called mechanical ‘ meaning her lungs are reaching the point where they’re not able to do their job any longer. We were able to wean her off the vent and get her lungs cleared quite a bit (the respiratory therapists at Phoenix Children’s are amazing) to where she could come home, but since these episodes will continue to happen, Olivia is now at home with hospice care. We cannot continue to reintubate and put her on a vent when her lungs are continually giving out, so we’re going to keep her as comfortable as possible, and when she does take another turn for the worse we won’t take her to the hospital. At this point she is doing very well at home. Her numbers are great and when she does have a harder time breathing, we put her on her bipap machine which definitely helps. So we hope and pray that she will continue to do well and be comfortable for a long time. Knowing Olivia and the fighter that she is, hopefully this will be the case. When the time does come and she really starts struggling, our hope is that we’re able to get her to Ryan House (they are also a hospice facility). We don’t have any idea what the future holds or when it will happen, so now more than ever we are taking one day at a time and enjoying every minute with Olivia.

Thank you for all of your support. We always tell Olivia that she’s got people around the world praying for her and sending her lots of good wishes. In her heart I know she appreciates it as much as we do.