I've blogged the last couple days, but looking at how many new visitors we have, I wanted to compile our story into one updated Blog Post.
Here is Our story.
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 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.
When recalling the day that Finley was fitted for a wheel chair, two thoughts come to mind. First; that was the sweetest little chair I've ever seen. Second; this is a tough pill to swallow that this new piece of equipment will 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 than 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. Spasticity is her demon.
A few months ago, the magic happened.
An answer to our prayers.
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 Finley's 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 February 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 pain meds 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.
Guess who just turned 3.
We went through the application process and received our surgery date.
I am now sitting in the hospital writing up this blog. Yesterday Finley underwent her life-changing surgery. We traveled across the country, which still sounds crazy to me.
The Doctor said Finley's surgery went great, no complications.
The following afternoon, as my husband sat beside her, her little body had a grand mal seizure. It lasted about a minute and was the scariest thing he's ever experienced. We do not know what caused this seizure, or if she will have one again.
The doctor had also said his prognosis was that Finley would have independence to walk on her own, even exercise. Talk about a Miracle!
She has a history of infantile seizures, her last one occueed when she was just 5 months old, very scary.
Since she has gone almost 3 years seizure-free, I believed they were behind us. I pray they stay behind us and that this is an isolated occurrence.
I'm mentally exhausted and broken. I'm doing my best to be strong, but we can't always be the broom... Somedays we are the pieces.
We chose YouCaring for our fundraiser because- they care. They are a smaller company and have been incredible with us. They have gone to great lengths to make us feel important and I just could not be more grateful for our YouCaring Family. A donation of any size would help us greatly as insurance did not cover this procedure. Our food, travel, and medical expenses when all is said and done, will certainly exceed $60k. We are still collecting donations, as well as shares + prayers. We are extremely grateful to those continuing to spread awareness via Finley's story.
Right now we are exercising our Faith.
To watch our story : click here
To donate: click here
To read more about the SDR surgery: click here