And so it continues...
Ella is home. By 7:40 in the morning it's just the two of us, Daddy & Ella. She's making great progress as her pain has subsided and her spirits have grown. We've embarked on a joint effort to establish some kind of routine and so far it's working well.
Navigating a "Hip Spica Cast" is not without its challenges. Everything we do is done in slow motion. The name of the game is "slow and gentle". From combing her hair in the morning to re-positioning her at night...slow and gentle.
One area that has been undoubtedly challenging is our nights. We have had three nurses since November of 2015 and are in the process of getting a fourth one. Our first nurse simply stopped showing up after just two weeks (nice, huh?). The second nurse was a temporary for the first until the agency could find us a permanent one. Finally, the third nurse came in January (2016).
As many of you may know, right from the start it was a rough go with the third nurse. We attributed that to Ella having so many nursing changes in such little time. As time went on, however, it was apparent that the nurse and Ella just didn't connect; not for lack of trying by all involved, it just didn't happen. We were really looking forward to having a nurse after the surgery, thinking we had that "base covered". It was hope against hope. It simply wasn't going any better when we returned home. In fact, it became worse. We are so exhausted from having to get up umpteen times over the past few nights. Not to mention Ava and Henry--who were also woken by Ella's hysterical screams of protest; they have actually expressed their utter exhaustion to us.
Kids are in tune with their environment--and Ella's night-time environment wasn't conducive to her (or anybody else's for that matter) getting a good night's sleep. Besides, if we are getting up more than we were before this nurse (or even before nursing) then what in the world is the point of continuing with her?
We have reached out to the agency to find another nurse. We know that if we find a nurse Ella will feel comfortable with then it would be just fine. We told the agency that we'd like for Ella to be a part of the process in choosing her nurse. The last three nurses barley met Ella before they started working; the system is broken in that respect.
And so it continues...what was said between Lindsay and I when we first learned of Ella's SMA Type 2 diagnosis holds true to this day..."We're not here to save her...we are here to take care of her."
Ella is home. By 7:40 in the morning it's just the two of us, Daddy & Ella. She's making great progress as her pain has subsided and her spirits have grown. We've embarked on a joint effort to establish some kind of routine and so far it's working well.
Navigating a "Hip Spica Cast" is not without its challenges. Everything we do is done in slow motion. The name of the game is "slow and gentle". From combing her hair in the morning to re-positioning her at night...slow and gentle.
One area that has been undoubtedly challenging is our nights. We have had three nurses since November of 2015 and are in the process of getting a fourth one. Our first nurse simply stopped showing up after just two weeks (nice, huh?). The second nurse was a temporary for the first until the agency could find us a permanent one. Finally, the third nurse came in January (2016).
As many of you may know, right from the start it was a rough go with the third nurse. We attributed that to Ella having so many nursing changes in such little time. As time went on, however, it was apparent that the nurse and Ella just didn't connect; not for lack of trying by all involved, it just didn't happen. We were really looking forward to having a nurse after the surgery, thinking we had that "base covered". It was hope against hope. It simply wasn't going any better when we returned home. In fact, it became worse. We are so exhausted from having to get up umpteen times over the past few nights. Not to mention Ava and Henry--who were also woken by Ella's hysterical screams of protest; they have actually expressed their utter exhaustion to us.
Kids are in tune with their environment--and Ella's night-time environment wasn't conducive to her (or anybody else's for that matter) getting a good night's sleep. Besides, if we are getting up more than we were before this nurse (or even before nursing) then what in the world is the point of continuing with her?
We have reached out to the agency to find another nurse. We know that if we find a nurse Ella will feel comfortable with then it would be just fine. We told the agency that we'd like for Ella to be a part of the process in choosing her nurse. The last three nurses barley met Ella before they started working; the system is broken in that respect.
And so it continues...what was said between Lindsay and I when we first learned of Ella's SMA Type 2 diagnosis holds true to this day..."We're not here to save her...we are here to take care of her."
