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 (a known side-effect of the serious acne medication, Accutane). 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.
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 is 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, and ballet. All while trying to let her just enjoy being a kid.
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.
THEN IT HAPPENED.
Finley was fitted for a wheel chair. It was the sweetest little chair I've ever seen. However, it was a tough pill to swallow that this new piece of equipment would be the next season of our life. We are not complaining, we know we are so blessed, but like every parent we long for endless opportunities for our girl. She wants to be standing all the time, I know this because she tells me so.
My heart breaks a little every time she asks me to help her stand.
If I could give her my legs, I would. As a parent there is nothing more devastating then watching your child suffer or struggle. She has to ask me to walk, to sit on something, to get off something, and often in the mornings she struggles to sit herself up.
our prayers were answered.
We had many many signs
Leading us to this SDR surgery that is done in St. Louis. It is known as a life changing surgery for kids with Spastic CP. I've even seen it referred to as "the cure" for this type of CP. Another girl said after the surgery it was like she had new legs, a lot of people are saying that actually.
Her Pain Management Specialist
Told us at our last visit in Febraury that he thinks Finley would be an excellent candidate for this procedure. Really? An opportunity for new legs for Finley?!
Her Spasticity is already high and can become tighter as she grows. Often people experience joints popping out of place due to their spasticity, as well as spasms and severe muscle aches, which are all extremely painful. There are medications, but a lifetime of strong painmeds and muscle relaxers filtering through her little liver isn't what we want for her. This surgery is a permanent spasticity reducer and is best performed at the young age of 3.
well, Fifi HAD just turned 3
We went through the application process
We know this is just the beginning to the next chapter of her young life. This surgery cost $50k and traditionally insurance does not cover it. We traveled across the country and stayed in a nearby hotel- they worked out a great rate with us (they do for all of Dr. Park’s patients). There was greater risk of "blood clots" if we chose to fly a week after surgery, so we hoped to raise enough to afford renting an RV so we could keep her comfortable during the 25 hour drive. That and we missed work, my husband and I both work on commission only, so being gone almost half of a month is a very scary thing for us, it was incredible to not have to add financial stress.
Dare to Dance Challenge
My girlfriend, Britty, came up with the idea to fundraise using a Dare to Dance Challenge Campaign. (Think ALS ice bucket challenge.) We hit the ground running with it, and it was extremely successful! It led us to raise $45k in two weeks! I still cry when I think about it, which is often. Strangers helped us, they HELPED FINLEY! We've seen amazing videos, even some from the Kings, Lakers, Perez Hilton, the KTLA news crew, and the famous twins from ABC's The Bachelor, and hundreds of entries from all over the world. We have had to pinch ourselves that everyone was dancing for our girl!
WE FUNDRAISED over 60k.
Because of you.
THANK YOU!!!
Finley had her SDR SURGERY on October 25, 2016 in St. Louis with Dr. Park.
It has changed our life and opened MANY DOORS.
Finley has also been the recipient of Stem Cells through RejuvaYou in Pasadena, CA. with Dr. John Shieh. We have been tracking all of her progress and to date she’s taken about 40 independent steps.
The IMPACT of her story is not lost on us, we are BEYOND grateful for every supporter and every opportunity we’re presented with.
We are currently working on our INCLUSION efforts in the media and documenting Finley’s progress along the way!
Finley is currently in mainstream Kindergarten, therapy a few times a week, and she wants to start dancing again. We are VERY proud of the little woman she is becoming and she is also very very excited to be a big sister soon!
(We’re adopting again!)
