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Sep 11, 2017 Latest post:
Nov 18, 2018
Celeste is the funniest, most vivacious and gregarious 5 year old girl you will ever meet. She came into the world as one of triplets, born severely premature at just 28 weeks. Celeste spent nearly three months in the NICU after birth and had a rollercoaster NICU course, as most NICU courses are. She experienced normal complications of severe prematurity, including a small brain bleed, apnea and bronchopulmonary dysplasia. After spending her first few months at home on oxygen support and multiple medications, she received a nearly clean bill of health from her NICU follow up clinic at six months old. They just had one concern: tight heel chords. Little did we know that this would be the first sign that Celeste had experienced a life-long neurological impact on her brain.
It was nearly a two year journey to diagnosis. Celeste started missing major milestones: sitting up, crawling and walking. We knew something was wrong, but diagnosing an infant/toddler was no cakewalk. Countless doctors visits, therapy consults and examinations later, our doctors suspected Cerebral Palsy. Hearing those words sucked the air out of our lungs. We didn't know what this meant for our sweet girl. Would she live a normal life? Could she keep up with her sisters? Would she ever be a soccer player? A ballerina? We just didn't know, and we were scared and heartbroken.
An MRI at the age of two confirmed the diagnosis: Spastic Diplegia Cerebral Palsy caused by Periventricular Leukomalacia. This simultaneously meant nothing and everything. It didn't change her therapies or her treatments, but it opened doors; doors to a life-altering surgery that would potentially bring her gross motor skills to the level of a typical child--the opportunity to be (dare I say) normal.
We did not take the decision to undergo a Selective Dorsal Rhizotomy lightly. This is an extremely invasive and high-risk surgery. We went through a barrage of testing, including a gait and motion analysis and a full neurological and PT work-up. Celeste was assessed as a candidate starting at the age of three, and underwent multiple tests to confirm that she was in fact a candidate. When we finally met with her neurosurgeon in July of this year, it was his opinion that Celeste would be fine without the surgery, being she is very high-functioning and relatively mild. But he then added the most critical sentence we had heard since embarking on this journey: "If you want what's best for your child, this is what I believe would be best for her." And with that, we knew what we had to do.
Celeste will be having her surgery on October 11th, 2017. Following the surgery, she will need to lay in bed, completely flat, for three days. She will have a bed pan and catheter. She will not be able to move more than a few inches. After that time, she will begin a slow, progressive rehabilitation process while staying inpatient in the hospital. It is estimated that she will be in the hospital for 5-6 weeks. During her rehabilitation, she will need to relearn how to walk. That's right--how to walk. Her legs will be weak, and her muscles will be relearning how to communicate with her brain. It will be exhausting. But if anyone can do it, Celeste can.
Following her stay in the hospital, she may come home in a wheelchair or walker and she will begin intense outpatient physical therapy five times per week for the next several months. Her therapies will slowly tier down over the next 6-9 months, finally graduating from therapy some time next year. It is our hope that Celeste will eventually walk more efficiently and effectively, and be able to keep up with her triplet sisters. Her doctor is quite optimistic and believes that Celeste will achieve the gross motor capabilities of any average child. This gives us great hope and helps us realize that this is a short term sacrifice for a long term gain.
We ask that you keep Celeste and our family in your thoughts, especially over the next several months. We appreciate your love and support more than you know. Thank you for following Celeste's story!