I love this photo of Riley because all you can see is his eyes. They are what make Riley the resident charmer in our Hyderabad home. He raises and lowers his eyebrows when he wants something. He furrows his brow when he is trying to figure out how to get into the food of his brothers and sisters.
They say that eyes are the windows to the soul. If this is true then Riley's eyes tell of a deep wisdom, trust and hope that is alive in him. They show no fear, only peace. Almost as if at 11 months old he has figured out what it takes most of us a lifetime to understand. When we have our complete and total trust in the One who holds us there is no place for fear, or sadness or any doubt that His plans are good and perfect.
I have wanted to write about blog about Riley for awhile because he has a story of miracles. Riley has overcome so much in a short time. Riley was born with a congenital heart abnormality. Before coming to SCH some wonderful friends sponsored Riley to have an emergency Glenn Shunt placement which saved his life. While recovering from the surgery he contracted the chicken pox! Despite all of this today he is recovering remarkably well. He is able to maintain a healthy oxygen level and is very alert, curious almost one year old.
With the surgery behind him we started to work on physical therapy. At nearly a year old Riley was not able to sit up on his own. In this process we started to realize some other developmental milestones that had not been met. When held, Riley is very "floppy". When picked up he has absolutely no trunk support and does not wrap his legs and arms around you. SCH sent him to a neurologist and after several tests our worst fears were confirmed. Riley has been diagnosed with Spinal Muscular Atrophy Type I.
SMA is a genetic disorder that affects spinal motor neurons which coordinate things like sitting, eating and breathing. This sweet charming baby boy will over the next year loose his ability to sit with the help of pillows, feed himself, wiggle his eyebrows and maintain his oxygen level. I have wanted to write Riley's story for awhile but not like this. Not with this ending.
Having a child diagnosed with a progressive neurological disease is every parent's worst nightmare. It is one of those situations that tempts us to question God's plans. How can this little boy who has already beat the odds in so many ways by the age of one, not be able to live a long life? We all want fair and this certainly isn't fair. It can cause us to be angry because there is no way God's plan for Riley is "good". A good God wouldn't abandon His children to such a disease.
But I am praying that those of us here at SCH and those of you who love Riley from all around the world (bless you) will choose to accept and move forward with this news by watching our little boy. I pray that we will praise God that he saw fit for us to be blessed with Riley even for a small amount of time. May we whole heartily be able to give Riley back to God saying "thy will be done, Lord". I pray come to know with an unwavering faith that God is all knowing and all powerful. That we come to believe Riley was created for "such a time as this". For God does not make mistakes and he does not abandon His children. I pray that we reflect the complete peace and trust in Christ that shines in Riley's eyes.
As a Christian I have seen God work miracles and I know for certain he could heal Riley totally and completely. As nurse I tend to be more of a realist and the facts show that Riley is going to need good medical care over this next year. Here at SCH we strive to love and treat each child as if they were our own. Riley is a child of The King, he is loved and valued and we are going to do everything possible to give him the quality of life every child deserves for as long as he is ours. We have started to notice some decline in him already and have made the decision to have a feeding tube placed to avoid having any problems with aspiration and to keep him well nourished. The hospitalization and surgery total cost comes to about $1500 USD. Will you join us in fighting for life for Riley? You can do so here: http://www.schindia.com/Special-Projects/urgent-surgery-fund/
~Pray for wisdom for Riley's caretakers. The decisions that will need to be made for Riley over the next year carry a heavy weight.
~Pray for Riley's upcoming surgery. May it be quick, painless with an uncomplicated recovery.
~Pray for Riley that over this next year he will know no pain, no fear but only total complete peace and love.
~Pray for those of us who have held and cared for Riley that we won't question why but simply praise God for this life we have been blessed to know.
They say that eyes are the windows to the soul. If this is true then Riley's eyes tell of a deep wisdom, trust and hope that is alive in him. They show no fear, only peace. Almost as if at 11 months old he has figured out what it takes most of us a lifetime to understand. When we have our complete and total trust in the One who holds us there is no place for fear, or sadness or any doubt that His plans are good and perfect.
I have wanted to write about blog about Riley for awhile because he has a story of miracles. Riley has overcome so much in a short time. Riley was born with a congenital heart abnormality. Before coming to SCH some wonderful friends sponsored Riley to have an emergency Glenn Shunt placement which saved his life. While recovering from the surgery he contracted the chicken pox! Despite all of this today he is recovering remarkably well. He is able to maintain a healthy oxygen level and is very alert, curious almost one year old.
With the surgery behind him we started to work on physical therapy. At nearly a year old Riley was not able to sit up on his own. In this process we started to realize some other developmental milestones that had not been met. When held, Riley is very "floppy". When picked up he has absolutely no trunk support and does not wrap his legs and arms around you. SCH sent him to a neurologist and after several tests our worst fears were confirmed. Riley has been diagnosed with Spinal Muscular Atrophy Type I.
SMA is a genetic disorder that affects spinal motor neurons which coordinate things like sitting, eating and breathing. This sweet charming baby boy will over the next year loose his ability to sit with the help of pillows, feed himself, wiggle his eyebrows and maintain his oxygen level. I have wanted to write Riley's story for awhile but not like this. Not with this ending.
Having a child diagnosed with a progressive neurological disease is every parent's worst nightmare. It is one of those situations that tempts us to question God's plans. How can this little boy who has already beat the odds in so many ways by the age of one, not be able to live a long life? We all want fair and this certainly isn't fair. It can cause us to be angry because there is no way God's plan for Riley is "good". A good God wouldn't abandon His children to such a disease.
But I am praying that those of us here at SCH and those of you who love Riley from all around the world (bless you) will choose to accept and move forward with this news by watching our little boy. I pray that we will praise God that he saw fit for us to be blessed with Riley even for a small amount of time. May we whole heartily be able to give Riley back to God saying "thy will be done, Lord". I pray come to know with an unwavering faith that God is all knowing and all powerful. That we come to believe Riley was created for "such a time as this". For God does not make mistakes and he does not abandon His children. I pray that we reflect the complete peace and trust in Christ that shines in Riley's eyes.
As a Christian I have seen God work miracles and I know for certain he could heal Riley totally and completely. As nurse I tend to be more of a realist and the facts show that Riley is going to need good medical care over this next year. Here at SCH we strive to love and treat each child as if they were our own. Riley is a child of The King, he is loved and valued and we are going to do everything possible to give him the quality of life every child deserves for as long as he is ours. We have started to notice some decline in him already and have made the decision to have a feeding tube placed to avoid having any problems with aspiration and to keep him well nourished. The hospitalization and surgery total cost comes to about $1500 USD. Will you join us in fighting for life for Riley? You can do so here: http://www.schindia.com/Special-Projects/urgent-surgery-fund/
~Pray for wisdom for Riley's caretakers. The decisions that will need to be made for Riley over the next year carry a heavy weight.
~Pray for Riley's upcoming surgery. May it be quick, painless with an uncomplicated recovery.
~Pray for Riley that over this next year he will know no pain, no fear but only total complete peace and love.
~Pray for those of us who have held and cared for Riley that we won't question why but simply praise God for this life we have been blessed to know.







