Callie's Story: Our sweet Callie was born early, a preemie weighing just 4 pounds. She was a strong fighter from the beginning, only requiring a little bit of oxygen and no time in the NICU. At about 3 months of age, we noticed that she wasn’t meeting developmental milestones, such as head and core control. We began OT, PT, and speech services. Unable to fully meet Callie’s therapy needs in rural King William County, we moved to Hanover in hopes of more frequent sessions. Hanover County far exceeded our expectations! However, Callie soon began to display several neurological abnormalities. Her eyes moved uncontrollably from side to side (called nystagmus), her hands and her feet shook uncontrollably, and she had seizure-like activity. She would vomit suddenly and forcefully for no apparent reason. It became so extreme one evening that we took her to our local KidMed, who immediately sent her by ambulance to MCV. After a traumatizing failed spinal tap, successful brain and spine MRI (without contrast) and seizure observation, it was determined that she probably had some type of virus. We followed up with ophthalmology (she got surgery on one eye and glasses for vision) and neurology. Neurology was concerned with the vomiting and prescribed several medicines for the seizures and possible stomach issues. They referred us to the feeding clinic at CHOR, where she was fully assessed and waitlisted. It was determined that the vomiting was due to her poor facial muscle tone and inability to fully chew “unsafe/scatter” type foods. We altered her diet to only include foods that she chose because they felt safe to her, and the vomiting decreased significantly. We were also referred to VCU Genetics to start researching a possible genetic abnormality. They found several chromosomal deletions, and to date, her genes are still being spliced and analyzed, as it’s a very long process. We were also referred to PM&R, where she saw Dr. Montasterio and was fitted for orthotics to help stabilize her legs for learning to walk. We had regular overnight seizure monitoring sessions at MCV. We continued on with our daily routine and I continued working full-time while juggling all of her various appointments and health needs. With weekly therapy and the help of her sweet siblings, Callie finally started walking at age two, and also graduated from speech therapy services! At three years old, Callie aged out of Hanover County’s Early Intervention Program, and Children’s Hospital of Richmond (CHOR) took over her remaining OT and PT therapies. At this point, it was determined that she had a developmental delay of unknown origin…yet once her speech began picking up and she was able to communicate with us, we quickly realized that her cognitive ability was completely normal. Everything pointed to something wrong with her body only. Throughout all of this, Callie remained oblivious to her limitations, and took on life with full force and happiness on a daily basis – which gave me piece of mind. In fact, many people meeting her for the first time didn’t even know that she had multiple medical problems. She was a trooper; a hard charger. At this point, I obsessively began researching every possible disability, spending what little free time I had trying to match up her symptoms with a diagnosis. I didn’t have time to wait for a genetic result, I wanted to help my baby NOW.
Then, a miracle happened. At her 3 year physical, our beloved pediatrician of 11 years noticed an abnormality on her back, just above her bottom. He ordered an MRI of her brain and spine (with contrast this time; a very important detail). He was vague regarding his suspicions so as not to alarm me, but I was restless until I received a phone call two days later from him, notifying me that Callie has a closed neural tube defect. In lay terms, this means she has Spina Bifida, but inside her body, not the obvious type where babies are born with spines outside of their skin, or obviously tethered cords that can be seen on prenatal ultrasounds. Her specific type is called Ventriculis Terminalis, or 5th Ventricle. FINALLY we had answers…our thought was, "Now what can we do to help her have the best life possible?”
Enter the amazing Dr. Tye at MCV! At our first meeting, Callie was still tiny and way too small for any type of corrective surgery. We began MRIs every 6 months to monitor the mass growth in her spine. Those days were hard for us. Lots of loss of sleep, guilt for having her put under anesthesia so often, and her not fully understanding the need for constant prodding, needle sticks, procedures, and medical appointments. At her most recent MRI on September 14th, 2018, Dr. Tye was “on the fence” for the need for surgery. Being the extremely thorough and cautious pediatric neurosurgeon that he is, he enlisted the consultation of Jenna Brand in Peds Urology Specialty, and Dr. Vadlamudi in Peds Gastrointestinal Specialty. Callie is almost 4 now and still not even close to being toilet trained. They confirmed that she cannot feel the urge to eliminate anything from her body; this is being caused by her 5th Ventricle condition.
Callie will have two major spinal surgeries completed by Dr. Tye at MCV/Children’s Hospital of Richmond. The first will be on October 11th, 2018, and will untangle & reattach the delicate nerves controlling her bladder and bowels, and shave down a portion of her 5th ventricle to make it smaller. The second surgery will happen about a year later. During that surgery, Dr. Tye will install a permanent shunt into the 5th ventricle mass that will allow it to drain down into the rest of her spinal fluid. This will prevent the mass from attempting to grow (growth occurs when it fills with spinal fluid). Removing the mass is entirely too dangerous and could leave her paralyzed, along with other possible side effects (such as incontinence; symptoms similar to a stroke). Her prognosis is that she should be able to live a normal, active life; especially since these procedures are being completed at such a young age. The shunt may need replacement at some point in her life, but we will live everyday to its fullest until that day arrives.
I would really love help from local friends to help sit vigil so she is never alone (she will be able to hear us), as well as help with meals for my remaining 3 children at home (who, by the way, have become mature, responsible, helpful, understanding little humans who help with their little sister in any way they can!) Throughout this process, one thing I’ve learned is to ASK FOR HELP when I need it. In the meantime, my dear friend of 35 years, Susan Barker Franklin, has set up this Go Fund Me to help support Callie and my family. I have recently lost two jobs as a result of Callie’s complex medical needs, appointments, and care. Callie is my full-time job for at least the next year, and despite all the “overtime” she requires, the medical bills continue to pile up. We still have to keep a roof over our heads, food in our bellies, gas in our van, and utilities for daily needs. Any help from friends and family would be a huge assistance in keeping us afloat while we endure these next few crazy months. And if it’s not in your heart or wallet to donate financially, please share our sweet girl’s story to your Facebook page so that others may follow our journey. I will be using her Courageous Callie page to keep friends and family, near and far, updated on all of her latest medical news, as well as her adorable daily life shenanigans. If any of you know Callie personally, you know there will be LOTS of fun shenanigans shared! She is SUCH a cool kid, and I look forward to sharing that with everyone who doesn’t have the privilege of knowing her personally.
Thank you to everyone who has called, texted, messaged, and even stopped me in the grocery store to ask for an update on sweet Callie. Thank you to those who have offered meals, rides, child care for Pierson, Bryce, and Taylor Grace. Regardless of what’s thrown our way, this little girl is going to go barreling into any endeavor with a love of learning and life like no other child I’ve met! I can’t wait to start sharing our journey with you! Please “like” our Courageous Callie page so that she will pop up on your news feed when I post about her! Please “share” her page with anyone you think would enjoy following us!
For now, I’m going to spend the next few days loading up some “Oldies but Goodies” pics of her life journey thus far. Enjoy!
Love from us all,
Callie, Pierson, Bryce, Taylor Grace and Mommy Lynette