Answers for sweet baby Violet
Donation protected
Our sweet Violet was born just 364 days after her older sister Nell, and I could tell something was different. After our first ER visit at just 4 weeks old for a suspected seizure I knew she was just slightly more fragile. She was a few weeks early though so I held out hope she just needed extra time. Fast forward to her 6 month well baby check, and red flags really started appearing. Our family Doctor sent us back to the ER, and this is where our new lifelong journey begins.
An emergency MRI was ordered, and under anesthesia she went. Thank goodness we could rule out a tumor or brain bleed. Now there's more questions. Why does she shake so much? Will she ever be able to sit, to eat real food, to even roll over? Off to a pediatric neurologist in Billings and we have an idea, Cerebral Palsy. (CP)
Cerebral Palsy is a neurological disorder that affects overall movement and muscle function. There is a vast scale of severity and range of how CP impacts motor function as well as cognitive development. It is not a degenerative disease and the severity of symptoms can improve over time. We are so lucky we are treating Violet this early. Many kids are not diagnosed until 12-18months.
Here we had to face some hard truths. Regardless of the diagnosis, we needed to start treatment immediately. Firstly, this means Physical and Occupational Therapy twice weekly in Bozeman. Hopefully one will get her moving so her muscles won’t atrophy any further, and the other will help her figure out how to eat, and maybe how to sleep longer than 2 hours at a time. We also take her to a pediatric Chiropractor weekly. Then we need to see a geneticist in Helena, of course they are months out in booking. We also need a second opinion in a much larger city. For this we have chosen Seattle Children's Hospital due to proximity to family and access to a car. There we will see another Neurologist, obtain a swallow study, and look at her body as a whole to see where she needs the most support.
Right now we are rearranging our lives completely.
We are now re-evaluating the sudden need for daycare for Nell, our 20 month old. As well as the need for a second vehicle as as like immediately shifts into overdrive.
We are juggling missed work and incoming bills. We have added travel expenses for each doctor’s appointment around Montana and further. As many of you know we own our own businesses so when we aren’t working, no money is coming in.
While we have medical insurance, many of us know- it doesn’t cover everything and some tests we feel the need to conduct as soon as possible.
Most likely this will be a lifelong change for our little family, a curve ball you could never expect, and we are going to redefine our image of life in Big Sky. Right now though we could use some help. If you're not able to donate, just hold us in your thoughts, I believe in the power of intention and positivity. We welcome prayer, hugs, kind words of affirmation in addition to dinners, and maybe even a few moments alone as a husband and wife from time to time (aka babysitters).
Thank you from Leah, Drew, Nellie, and Violet
An emergency MRI was ordered, and under anesthesia she went. Thank goodness we could rule out a tumor or brain bleed. Now there's more questions. Why does she shake so much? Will she ever be able to sit, to eat real food, to even roll over? Off to a pediatric neurologist in Billings and we have an idea, Cerebral Palsy. (CP)
Cerebral Palsy is a neurological disorder that affects overall movement and muscle function. There is a vast scale of severity and range of how CP impacts motor function as well as cognitive development. It is not a degenerative disease and the severity of symptoms can improve over time. We are so lucky we are treating Violet this early. Many kids are not diagnosed until 12-18months.
Here we had to face some hard truths. Regardless of the diagnosis, we needed to start treatment immediately. Firstly, this means Physical and Occupational Therapy twice weekly in Bozeman. Hopefully one will get her moving so her muscles won’t atrophy any further, and the other will help her figure out how to eat, and maybe how to sleep longer than 2 hours at a time. We also take her to a pediatric Chiropractor weekly. Then we need to see a geneticist in Helena, of course they are months out in booking. We also need a second opinion in a much larger city. For this we have chosen Seattle Children's Hospital due to proximity to family and access to a car. There we will see another Neurologist, obtain a swallow study, and look at her body as a whole to see where she needs the most support.
Right now we are rearranging our lives completely.
We are now re-evaluating the sudden need for daycare for Nell, our 20 month old. As well as the need for a second vehicle as as like immediately shifts into overdrive.
We are juggling missed work and incoming bills. We have added travel expenses for each doctor’s appointment around Montana and further. As many of you know we own our own businesses so when we aren’t working, no money is coming in.
While we have medical insurance, many of us know- it doesn’t cover everything and some tests we feel the need to conduct as soon as possible.
Most likely this will be a lifelong change for our little family, a curve ball you could never expect, and we are going to redefine our image of life in Big Sky. Right now though we could use some help. If you're not able to donate, just hold us in your thoughts, I believe in the power of intention and positivity. We welcome prayer, hugs, kind words of affirmation in addition to dinners, and maybe even a few moments alone as a husband and wife from time to time (aka babysitters).
Thank you from Leah, Drew, Nellie, and Violet
Organizer
Leah Janelle Clendenin
Organizer
Big Sky, MT