Chloe Grace Viana Update
February 2016

Chloe Grace is five and a half years old and continues to defy the odds she was given at birth. She was born in April 2010 with Spina Bifida, Hydrocephalus, Myelomeningocele, Arnold Chiari Type II Malformation, and Bi-Lateral clubbed feet. We were told after birth she would never walk, have urologic/bladder control, and possible cognitive delays.

She is enjoying Kindergarten and has made many friends and keeps a very busy schedule. She is smart, vibrant, loving and outgoing. Her determination to be independent and like her peers is inspiring. She is taking taekwondo twice per week, swim lessons once a week, is in Girl Scouts and continues with physical therapy twice per week at home and in school.

Chloe was potty trained this past summer and only wears a diaper at night. Her kidneys and bladder are "perfect" in her urologists words. We have started a bowel regimen to help her remain regular, and thankfully some simple changes and she is no longer having any issues.

She wears glasses and for now her ophthalmologist says surgery continues to stay off the table.

Her orthopedic is very excited for all her progress and strength. Chloe had a de-rotational osteotomy in December of 2014 and since being healed she has made tremendous progress in her strength, overall stability, and her ability to even walk without her crutches. It requires a lot of focus which is still a challenge for a five-year-old but she walks so fast it is more like running.

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 and she received thumbs up from all her specialists. In truth she leaves them speechless and they believe she is a miracle too.

The future looks bright for Chloe Grace and we couldn’t be more grateful and excited to see all she accomplishes. She is our inspiration and greatest blessing. It is a privilege to journey with her in this life.

We are forever grateful to The Shannon Daley Memorial Fund for the assistance we received several years ago. It allowed us to climb out of medical debt and get the intensive therapy Chloe Grace needed to excel and defy the odds. They are an unmistakable part of Chloe’s success and they are family.

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February 2015
Chloe Grace Viana is now four and a half years old, she is very smart and happy, and she is without a doubt the light of our life. She is motivated, definitely determined, and inspires us every day. She loves all things Disney, especially princesses, loves school, cooking, her favorite colors are pink and purple, she enjoys drawing, painting, singing and dancing.

Chloe Grace continues to attend a pre-school disabled program in Bridgewater five days a week and receives physical therapy at school two times per week. She truly enjoys everything about school.

Since our last update she has also started wearing glasses for wandering eyes, far sightedness, and astigmatisms. We have seen improvement in both eyes since she started wearing lenses and she can notice a difference too. She may need surgery in the future, but for now her ophthalmologist said we wait and see how much her new lenses and continued strength gain improve her vision.

Chloe Grace’s legs have gotten very strong over the past year. Physical therapy at the pool over the summer and private physical therapy at home have made a huge difference in Chloe’s progress, in addition to her pre-school program, and she has become very independent with her fore-arm crutches. She even started taking steps using only one fore-arm crutch. As you can imagine this was very exciting for us all. She has also really improved getting up and down staircases independently with an adult close by just in case, along with verbal prompts and safety reminders.

On December 3, 2014 Chloe underwent an orthopedic surgery on her lower left leg, a tibial de-rotational osteotomy, and she has been recovering nicely at home. Overall recovery has taken eight weeks in a cast and a lot of physical therapy to regain strength and muscle back in her leg. This surgery was important to help straighten her lower left leg and foot. Once healed this will allow Chloe to walk more easily without having to fight her left foot from turning in.

On January 5th we returned for her second post-op follow up and they removed the full leg cast and replaced it with a short leg cast, and then on January 29th we returned to have the short cast removed as well.

She has since started to stand and take steps. We are using her pediatric walker again until she regains enough strength and muscle to get back to the fore-arm crutches independently. Chloe is very excited to be free of her cast and return to school in March. She has a lot of physical therapy ahead of her to get strong again, but we know with all our hearts that she will get there with her infectious determination and spirit, and it will all be worth it.

 

February 2014
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 are very grateful to the Shannon Daley Fund for choosing Chloe Grace as one of their 2013 recipients! The donations have allowed us to focus on getting Chloe Grace what she needs: durable medical equipment, special shoes, office visits and exams, and hours of PT and OT therapy, to name a few.

Chloe will turn four years old in April and has made wonderful progress over the last year.

Since last year's fundraiser, Chloe started a pre-school disabled program in Bridgewater. It is a wonderful program, and Chloe is thriving and enjoying every aspect of it. 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 she also receives private in-home therapy several times a month. She recently started receiving private occupational therapy at home to address some gravitational weaknesses and to learn important skills for daily living.

It has taken Chloe a full year to learn how to use her fore-arm crutches and transition away from her pediatric walker. In late November 2013, we also transitioned her from solid AFO braces to articulated AFO braces. The articulated AFO braces have a flexible joint at the ankle to simulate a more natural movement and pattern while walking. Additionally, she now wears a de-rotational strap, which goes around her waist like a belt and connects with straps to her AFOs to simulate the muscle movement that would normally keep her feet straight for a normal walking pattern. She is still building her endurance with her new equipment, but she knows when she needs to stop and rest and is quick to recover and resume her activities throughout the day.

Chloe was born with bilateral clubbed feet, but with casting and therapy both feet have improved, especially the right. As much as her right foot and leg look great, the left leg and foot still turn in quite a bit. We are hoping continued therapy will prevent her needing a future surgery to cut the left leg bone and rotate it out. We were fortunate in November to learn of a shoe brand that is made specifically to go over braces, and they have been a Godsend. We are no longer buying shoes that are two sizes bigger and extra wide, adding in weight and length to an already labored function. Now these amazing shoes fit perfectly over her braces and have helped her foot to rotate out less. So for now…patience and time...

All the hours of PT and OT therapy 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 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 is not yet potty trained, and we are still unsure whether or not she will need to utilize a catheter as she gets older. Potty training has been a slow process. Chloe isn’t always in the mood to cooperate, but we aren’t rushing her. Thankfully, she has never had any bladder or kidney infections which are great signs that she does have control of her urologic function and is voiding her bladder completely. We are looking forward to the spring, warmer weather, and letting her go without diapers to move into the final stages of potty training.

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 rip it off 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. What once presented itself as another future surgery has over time become only a likelihood that Chloe will need glasses when she gets older. For now her ophthalmologist will continue to monitor her, and time will tell.

Amidst all these concerns and challenges comes our "Little Champion" with the heart of a lion and the personality of a comedian. She finds joy in the simple things, and it reminds us to stop and smell the roses. She is writing out her first name, reciting the alphabet, counting up to 50 with very little assistance, recognizing her shapes and colors, reading and loving books, cooking, doing art and crafts, and playing with her 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.

Thank you again Shannon Daley Memorial Fund for making us a part of your amazing family and assisting us in providing Chloe Grace the support she needs to grow healthy and strong.!

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