It seems like an eternity since I've sat in front of my computer to write a blog. The days whiz by like lightning and the nights quickly slip away. It seems as though the complexities of life get more entangled, the business of keeping our heads above water more ominous, and the joys in seeing our children flourish with new-found adventures flood our senses.
As we begin settling ourselves into a routine we also find ourselves picking up thoughts, conversations, anticipations, and the uncertainty of the unknown right where we left them just prior to the move.
The other day, as Ava and Henry were outside playing, Ella wanted to take a respite with Sasa on the couch. She found her familiar spot by Sasa's head--and Lindsay and I sat with her in the family room. Our conversation began with something about the house; some project among a million that needed our attention. It quickly turned to Ella's hips.
We had our consultation with her neurology team at Children's Hospital; we gathered their opinions, expertise, and insights. We are still waiting for Ella's pulmonary specialist to weigh in...an all-too-important factor to consider when contemplating surgery for a child with SMA. Nonetheless we still have to grapple with the decision on what to do...or better stated, when to do it.
She will need the hip surgery...that's a given. SMA weakens the muscles, atrophies them, leaving them useless in many cases. The muscles that are designed to hold our hips in their proper place are no exception. With weakened, atrophied hip muscles the hip bones (the head of the femur) begin to "slip out" of the joint. Corrective surgery calls for cutting each "head" in half, realigning them, and screwing metal plates in place for support. That process alone sends shivers down my spine for a variety of reasons.
Things to consider include Ella going under anesthesia. A risky endeavor for a child with SMA. Being intubated can lead to an increase in dependence of the bi-pap. There is no valid, reliable research on kids with SMA that the surgery has a positive or negative prognosis; although kids with CP (Cerebral Palsy) have been followed and the reports are generally good.
Ella is fairly strong right now, considering her disease and the nature of it...the doctors did mention that having the surgery earlier than later might be a good idea...a chance to capitalize on her "strength".
Our conversation endured for a good 20-30 minutes...all the while Ella sat with Sasa, singing, petting, and showering love on our beloved dog. She was clueless to the depth and breadth of our conversation; she was happy, content, and enjoying her new home and all that it offers. I kept watching her as we spoke about the surgery and wished...deep down in the pit of my soul, that I could do something to take the SMA away...just take it away from her.
Our decision as to when to do the surgery will have to come soon. We will make that decision and move forward...doing what we can, what we must, and what we are called to do for our youngest.
As we begin settling ourselves into a routine we also find ourselves picking up thoughts, conversations, anticipations, and the uncertainty of the unknown right where we left them just prior to the move.
The other day, as Ava and Henry were outside playing, Ella wanted to take a respite with Sasa on the couch. She found her familiar spot by Sasa's head--and Lindsay and I sat with her in the family room. Our conversation began with something about the house; some project among a million that needed our attention. It quickly turned to Ella's hips.
We had our consultation with her neurology team at Children's Hospital; we gathered their opinions, expertise, and insights. We are still waiting for Ella's pulmonary specialist to weigh in...an all-too-important factor to consider when contemplating surgery for a child with SMA. Nonetheless we still have to grapple with the decision on what to do...or better stated, when to do it.
She will need the hip surgery...that's a given. SMA weakens the muscles, atrophies them, leaving them useless in many cases. The muscles that are designed to hold our hips in their proper place are no exception. With weakened, atrophied hip muscles the hip bones (the head of the femur) begin to "slip out" of the joint. Corrective surgery calls for cutting each "head" in half, realigning them, and screwing metal plates in place for support. That process alone sends shivers down my spine for a variety of reasons.
Things to consider include Ella going under anesthesia. A risky endeavor for a child with SMA. Being intubated can lead to an increase in dependence of the bi-pap. There is no valid, reliable research on kids with SMA that the surgery has a positive or negative prognosis; although kids with CP (Cerebral Palsy) have been followed and the reports are generally good.
Ella is fairly strong right now, considering her disease and the nature of it...the doctors did mention that having the surgery earlier than later might be a good idea...a chance to capitalize on her "strength".
Our conversation endured for a good 20-30 minutes...all the while Ella sat with Sasa, singing, petting, and showering love on our beloved dog. She was clueless to the depth and breadth of our conversation; she was happy, content, and enjoying her new home and all that it offers. I kept watching her as we spoke about the surgery and wished...deep down in the pit of my soul, that I could do something to take the SMA away...just take it away from her.
Our decision as to when to do the surgery will have to come soon. We will make that decision and move forward...doing what we can, what we must, and what we are called to do for our youngest.
