Lindsay and I sat in the doctor's examination room with our baby one-year old Ella by our side. The doctor was looking at some test results and was deeply engrossed in what he was reading. Finally he said that Ella most likely has Spinal Muscular Atrophy and that there's nothing they could do for her. He advised us to take her home and love her until the disease takes her away from us. We left the hospital devastated. The actual, official diagnosis of SMA came after genetic testing was completed...that day will live in our minds forever.
Ella became sick shortly after that visit with RSV (an upper respiratory virus) and ended up being hospitalized at Children's Memorial Hospital of Chicago (now Lurie's Children's Hospital). While we were at the hospital we heard that a prominent neurologist was going to be working there. We made a follow-up appointment with her. She showed us how to take a proactive approach to the disease and set us up with several machines and resources.
Eight years have passed and Ella is still with us. She will be turning 9 years old tomorrow (Monday, June 10th). Over the past eight years Ella has been through much. She has been hospitalized and undergone three major surgeries. She has worked really hard in her therapy sessions week after week. She's learned to maneuver a 400 lb power wheelchair and drives it better than most people drive their cars. She's thrives at school and continues to make friends. She cruises the neighborhood and always has a smile on her face.
When it comes to being independent Ella has made wonderful strides. She recognizes what she can and cannot do for herself; and when trying something new she always puts forth great efforts. She's smart, likable, and fun to be with.
Within the past few weeks Ella auditioned for and made the Young Naperville Singers that will start in the Fall. She is excited to have an extracurricular activity like Ava and Henry do, for herself. Since we know she'll be doing a lot of singing we decided to get her a karaoke machine for her birthday. We didn't have a lot to do over the weekend so we decided to let her open her birthday gifts a few days early. She tore right into them. She received books, a stuffed unicorn, several boxes of kids stick on nails, and the karaoke machine. Needless to say, the kitchen table is full of the gifts as the girls put the nails on and all of us sing into the karaoke machine. During more quiet times, she reads her new books. And, of course, she keeps her stuffed unicorn with her day and night.
On Ella's actual birthday she has to go to the doctor to get the rods in her back lengthened...a relatively easy procedure that is outpatient. They simply use a magnet on the outside of her back to lengthen the rods on the inside...she's really growing up! From there we'll go out for a family dinner at a place of Ella's choice.
SMA has been a tough road for us to handle. Many times we were less than confident in our ability to care for Ella. We turned to family and friends and began building a network of support that stands strong to this day. We learned all we could about SMA--from what causes it to the plan to cure it. We've been the fortunate recipients of fundraisers, lemonade stands, donations, and support for our whole family.
We started this blog to let people know what's happening, both far and near. To this day we have 478,865 hits! Thank you for taking the time to read our story...please feel free to share this blog as you see fit as a gift to Ella!
Ella became sick shortly after that visit with RSV (an upper respiratory virus) and ended up being hospitalized at Children's Memorial Hospital of Chicago (now Lurie's Children's Hospital). While we were at the hospital we heard that a prominent neurologist was going to be working there. We made a follow-up appointment with her. She showed us how to take a proactive approach to the disease and set us up with several machines and resources.
Eight years have passed and Ella is still with us. She will be turning 9 years old tomorrow (Monday, June 10th). Over the past eight years Ella has been through much. She has been hospitalized and undergone three major surgeries. She has worked really hard in her therapy sessions week after week. She's learned to maneuver a 400 lb power wheelchair and drives it better than most people drive their cars. She's thrives at school and continues to make friends. She cruises the neighborhood and always has a smile on her face.
When it comes to being independent Ella has made wonderful strides. She recognizes what she can and cannot do for herself; and when trying something new she always puts forth great efforts. She's smart, likable, and fun to be with.
Within the past few weeks Ella auditioned for and made the Young Naperville Singers that will start in the Fall. She is excited to have an extracurricular activity like Ava and Henry do, for herself. Since we know she'll be doing a lot of singing we decided to get her a karaoke machine for her birthday. We didn't have a lot to do over the weekend so we decided to let her open her birthday gifts a few days early. She tore right into them. She received books, a stuffed unicorn, several boxes of kids stick on nails, and the karaoke machine. Needless to say, the kitchen table is full of the gifts as the girls put the nails on and all of us sing into the karaoke machine. During more quiet times, she reads her new books. And, of course, she keeps her stuffed unicorn with her day and night.
On Ella's actual birthday she has to go to the doctor to get the rods in her back lengthened...a relatively easy procedure that is outpatient. They simply use a magnet on the outside of her back to lengthen the rods on the inside...she's really growing up! From there we'll go out for a family dinner at a place of Ella's choice.
SMA has been a tough road for us to handle. Many times we were less than confident in our ability to care for Ella. We turned to family and friends and began building a network of support that stands strong to this day. We learned all we could about SMA--from what causes it to the plan to cure it. We've been the fortunate recipients of fundraisers, lemonade stands, donations, and support for our whole family.
We started this blog to let people know what's happening, both far and near. To this day we have 478,865 hits! Thank you for taking the time to read our story...please feel free to share this blog as you see fit as a gift to Ella!
Web address to copy & paste & share:
https://ellas-corner.blogspot.com/2019/06/ellas-birthday-giftby-michael.html
