DAILY LIVING & MOBILITY

Finley's Story- My name defines who I am: A CP Warrior

Cerebral Palsy (CP)

Christina Smallwood

first comes love, then comes marriage...

Shortly after our first wedding anniversary we did what every couple tends to do and decided to try for baby. After a long 14 months of having no success we were mentally exhausted and turned to an Infertility Specialist. We learned that I have what's called Diminished Ovarian Reserve. They explained that natural conception would be unlikely and our risk of multiple miscarriages was high. We were crushed. Through all of our prayers, our hearts led us to Adoption. We met with an attorney a month later and thus began the lengthy process. 

After a short wait we received the call that we were chosen by an expecting couple. We were beyond elated to be chosen. We met with the couple and they told us we would become parents to a little girl in just a few short months. To say we were excited would be an understatement. 

A few weeks later, our birthmother showed signs of preterm labor. And our daughter was delivered by emergency c-section at 31 weeks gestation. She spent her first few hours of life fighting, alone in a NICU room hooked up to a ventilator. 3 pounds of pure heaven. I'll never forget the first time I laid my eyes on her, I was so scared and so in love, I just wanted to climb in her little incubator and tell her, "I'll always protect you and I promise to give you the world." And just like that all the pain of infertility was quickly forgotten.

learning our baby has a tough road ahead...

We chose the name Finley, which means "fair warrior." Couldn't be more fitting. We learned that she had suffered Bilateral Grade-3 Brain Bleeds due to her prematurity. When we googled "Brain Bleeding" we saw that likely she would have Cerebral Palsy (CP). We were told she would be very delayed and might not ever walk. We chose to do everything in our power to make sure this wasn't the case. Early intervention was Key.  We started therapy and Infant Stimulation when she was just 3 months old. We have done tri-weekly Occupational and Physical therapies, stretching programs, eye-surgery and patching, Botox injections, some medications, restricted diets, essential oils, supplements, infant massage, day bracing, night bracing,  horse therapy, water therapy, kinesio-taping, ballet, yoga, and Intensive Therapy Clinics- All while trying to let her just enjoy being a kid. She started School Last year, and absolutely loves it!

Finley's official diagnosis is Spastic Diplegia Cerebral Palsy with overall Left-Side Weakness. Spastic diplegia, historically known as Little's Disease, is a form of CP that is a chronic neuromuscular condition of hypertonia and spasticity — manifested as an especially high and constant "tightness" or "stiffness" — in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Spastic diplegia accounts for about 22% of all diagnoses of cerebral palsy, and together with spastic quadriplegia and spastic triplegia make up the broad classification spastic cerebral palsy, which accounts for 70% of all cerebral palsy diagnoses.

we believe in walking miracles...

When Finley was fitted for a wheel chair last year, it hit me.  I saw the next phase of her life and knew there had to be more.  I had read about SDR in online CP SUPPORT groups and figured it was worth a shot to see if she was a candidiate.  She was.  Our Friends + Family quickly rallied to help us fundraise via YOUCARING, our insurance did not cover the cost.   We flew to St. Louis in October 2016 and Finley underwent the Selective Dorsal Rhizotomy with the best pediatric nuerosurgeon in the world, Dr. TS Park, for this operation.  He told us it was successful and all of her spasticity was removed. It was CRAZY that her legs went from stiff hard logs to being jello-like.  Life changing, indeed.  We have been in intensive weekly therapies ever since.  Finley took her first independent step on January 18th 2017.

we always knew she was special...

To date Finley has taken two-consecutive independent steps.  Our 6 month goal is to get her taking 5 steps in a row.  On May 31st Finley had a Stem Cell Transfusion (for more info: www.fifiandmo.com/blog). That night we observed some huge improvements!  Every day since has been an adventure, she's more active and keeping mama on her toes!  I absolutely LOVE it!  I just booked another Intensive Therapy Week at Walk This Way in Texas- we will be traveling there in the fall.  It's all about enjoying the journey and connecting with others- I am so grateful for the community that supports us and our special little lady.  She is the most spirited little determined soul.  I am blown away by her sweetness.  My husband and I know there will continue to be tough roads ahead for our precious girl.  As we continue to do our best to provide her with the best life possible, she's doing the exact thing for us in return.  I knew from the moment I saw her in that little incubator when she was born, that she was going to rock our world in the best way possible.

EMPOWER OTHERS!

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