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Updated Story of Chloe written by her mom July 2016
Chloe Grace turned 6 years old in April and she continues to defy the odds she was given at birth.
We often think back to December 2009, when expecting Chloe Grace, to our 20-week ultrasound and all of the overwhelming information we learned. We realize more every day, as she continues to defy the odds and to prove wrong many parts of her original diagnosis, that Chloe truly is our MIRACLE girl! Her vibrant and engaging personality has captured our hearts beyond words, and those who meet her instantly decide she is special. We know with every cell in our being that her purpose is beyond our understanding, and we are grateful God chose us to be a witness and a part of her journey.
We didn’t know if she would survive birth or the major surgeries ahead. Infection was a great concern, as well as, serious complications. We could not even hold her until she was 5 days old.
Chloe Grace was born in April 2010 with Spina Bifida (L1), Myelomeningocele, Arnold Chiari Malformation Type II, Hydrocephalus, and Bi-Lateral Clubbed feet.
Born via c-section, at 38 weeks’ gestation, she was less than 24 hours old when she underwent 5.5 hours of major neurosurgery to close her back, repair the myelomeningocele, and shunt the hydrocephalus. She will require a shunt for the rest of her life. Thankfully she did not have any complications after her first surgery and she survived.
After her surgery, Chloe Grace’s neurosurgeon advised us that her condition was far worse than expected and that she would be 100% wheelchair bound, she would have no bowel/bladder control, and possible cognitive delays. We remained positive and did not accept the diagnosis as final, believing that Chloe Grace would decide her future. We knew from the start that she was a special gift to us, and we never considered “returning” the gift because she would be different than most. As a result of our faith and trust, God has been by our side every “STEP” of the way.
After spending 10 days in the NICU, we finally brought our baby home –only to face several other surgeries in the very intense first 18 months of her life.
In June of 2010 she underwent her second surgery, an Achilles Lengthening for her left foot, which was severely clubbed at birth. In August 2010 a third and unexpected surgery was performed, an emergency shunt revision due to a shunt malfunction. In September of 2011, she underwent a fourth surgery, another Achilles Lengthening on her left foot.
She also experienced a slight case of Torticollis in her first year, which self-corrected as she got stronger. We see an Ophthalmologist for a wandering right eye and stigmatism which may require corrective surgery in the future.
Through the Early Intervention Program sponsored by the ARC of Somerset County, Chloe received three kinds of therapy per week: physical, occupational, and speech from one month old up to the age of three.
She wore Dennis Brown shoes for her first year, has been through a series of castings to address her clubbed feet, has spent hours in a vertical prone stander, learned to walk with a pediatric walker, and currently she requires orthotics and the assistance of fore-arm crutches to walk independently.
Chloe is thriving and enjoying every aspect of Kindergarten and she has special aides assigned to her for the bus and the classroom who oversee and ensure her safety. In school she receives a combination of private and group physical therapy, and adaptive physical education.
She also receives private in-home therapy 1-2 times a week to learn to navigate her home environment safely and to address some gravitational weaknesses and to learn important skills for daily living. This visits are not covered by insurance.
She is very motivated and smart, and all her therapists and doctors agree that she is responding well and making great progress. Her determination helps her to achieve the goals set by her medical team, and she continues to grow stronger and participate in routine daily activities. Her orthopedic doctor believes very strongly that she will walk and should not need a wheelchair. With the aid of braces and crutches, she is ambulating independently.
Chloe Grace had an orthopedic surgery in December 2014 (external tibial rotation osteotomy) to cut the left leg bone and rotate it out. She spent 8 weeks in a cast and it took about 4 months for her to fully recover and be cleared post surgery.
Her orthopedic is very excited for all her progress and strength since being cleared from the De-Rotational Osteotomy. Chloe has made tremendous progress in her strength, overall stability, and her ability to even walk without her crutches. Yes!!! :-), she can take some steps without her crutches, but it requires a lot of focus which is still a challenge for a five-year-old. She often walks so fast with her fore-arm crutches it is more like running, and we find ourselves asking her to slow down. That is pretty amazing for a little girl they said would never walk.
Her determination to be independent and like her peers is inspiring. She is taking taekwondo twice per week, swim lessons/aqua therapy once a week, and physical therapy twice per week at home and in school.
Her greatest challenges at this time, and looking ahead, are her gross motor skills and trying to build her stamina to ambulate independently in both small and larger social environments. Chloe Grace also faces challenges on a daily basis performing routine activities like getting dressed, putting on her braces, and bathing. We continue to work on building the skills necessary to help her become as independent as possible.
All the hours of therapies and activities are starting to pay off, and Chloe is even working on special goals like walking up and down stairs while coordinating with her crutches.
We are hoping to trial her getting on and off the bus independently in the Fall of 2016 and phase out her transport stroller for school. We are starting to see the fruits of her hard work and determination not just on stairs, but in any environment.
All ultrasound results so far of Chloe’s kidney and bladder have been in her doctor’s words, “PERFECT!!” so we hold on to great hope for her urologic control and function. Chloe was potty trained this past summer and only wears a diaper at night or for long car rides. Another way she defies the odds she was given at birth.
We have also seen great improvement with the wandering eye issues Chloe has had since birth. We have tried the patching technique, and patching is always a challenge because Chloe wants to remove it as soon as we put it on. As she continues to grow stronger, the nerves in her eyes have gotten stronger too and have self-corrected this issue. For now, her ophthalmologist will continue to monitor her, and time will tell. She has been wearing glasses for two years now.
She recently had her annual check-up with her Neurosurgeon and Neuro Team at The Gait and Spasticity Clinic at Goreyb Children’s Hospital in Morristown (November 2015) and she received thumbs up from all her specialists. In truth she leaves them speechless and they believe she is a miracle too.
Chloe maintains a busy schedule with continuous check-up visits to all her specialists and annual exams. With all her diagnosis we have to be vigilant in keeping up to date with her medical team, we hope to never deal with some of the common complications that can come from her various diagnosis, but we are told age and hormones can also play a major role in change. Like with the Chiari Malformation which can include: debilitating headaches, nausea, potential for seizures and possible surgery to reduce pressure at the brainstem.
She requires annual X-rays, Pediatric full brain MRI’s where she is sedated followed by a re-programming of her shunt, and Cat-scans, she continues with an intense physical therapy regimen to promote a continued gain of strength and stability, and annually she requires new orthotics and updated durable medical equipment.
Chloe Grace underwent 3 surgeries, 4 hospitalizations, and 5 trips to the ER in the months of March and April 2016. She developed a shunt infection and required an emergency shunt removal and revision and spent 9 days in the PICU. Later in the month of March she required a third surgery to remove her Gall Bladder. She has been suffering intense pain episodes that last 30-60 minutes at least 2 – 3 x a week and is having many issues regarding her bowel control and function. It is now starting to affect her urologic function as well. We are working with her team of specialists to find a reason why she continues to experience these painful episodes and why are they happening more frequently. We may have to travel out of state to a special clinic, but that would not be covered at all by our insurance.
Outside of her bowel and bladder issues she has regained her strength and stamina through an intense physical therapy plan that has allowed her to return to school and she is ambulating independently once again using her forearm crutches.
Amidst all these concerns and challenges comes our “Little Champion” with the heart of a lion and the personality of a comedian. Chloe Grace has taught us so much about life and appreciating the gift of life. She finds joy in the simple things, and it reminds us to stop and smell the roses. She loves to dance and play musical instruments; she loves swimming, singing, coloring and cooking with Mommy. She is writing out her name and short sentences, reciting the alphabet, counting up to 100, reading and loving books, doing art and crafts, and playing with her friends and cousins. Chloe Grace is always ready for an adventure and a party. She is smart, observant, and cognitively doing great.
We are so greatly blessed that Chloe is bright, determined, and outgoing. She continues more often than not to leave us speechless. She brings tremendous joy to our family, and all who meet Chloe Grace can’t help but fall in love with her personality. She is our inspiration, our greatest teacher, and she gives our lives a beautiful, privileged purpose.