Sophia

Sophia began having medical problems at the age of six months and her entire life has been endless hospitalizations, testings, procedures, terrifying misdiagnoses, and almost always a statement that she would not live past one year.  Or probably not past two years old. Or probably not past three years old.   Or four years old. Endless doom scenarios. 

Her entire life has been spent in and out of emergency rooms, displaying symptoms and presenting behaviors that either baffled the doctors or led them to categorize her as a "special needs child"… 

Her medical problems have consisted of a wide spectrum of symptoms from physical difficulties, loss of milestones, speech, digestive, neurological, visual, and memory issues to name just a few.  However, the memory problems have been the most consistent.  We have been told that it is rare for a young child to have long-term memory loss but that didn't stop her from proving otherwise.  Because of  these issues, including  the memory loss, self-mutilation, and violent tendencies, we decided it was best I close my business and care for her full-time at home where I could homeschool her so she could receive my undivided attention and care. 

Sophia struggled with a myriad of medical issues and behavioral issues which could not be specifically identified. My husband and I made an agreement never to place her on medication if the doctors could not identify an actual specific disease, condition or confirm a diagnosis.  We did not want to just "drug her up" if the medication would not cure her. We agreed to try everything except prescription medications until a time came when we had no other choice or she was actually given a confirmed diagnosis. 

Unfortunately for years she was always placed in large vague categories medically.  Many doctors  would perform tests and always say they would know what it wasn't but didn't know what it was . Many generalized diagnoses were suggested to us such as pseudotumor cerebri, meningitis, progressive neurodegenerative process, autism, aspergers syndrome, mitochondrial disease, lupus, etc. never lead us to any solutions. ..

While in the ICU we were told by the doctors that the strokes were most likely the result of a blockage of blood flow in the brain, possibly a clot or tumor.  In order to gain further knowledge, Sophia would need to be sedated for an angiogram. 

The day of the procedure the doctor told me that it would be awhile before she was awake from the angiogram and we should just relax, get something to eat, and return to the room, but added "Unless something goes wrong, we could be done in five minutes.  But I'm sure it will be awhile for us to complete this." 

I was with her as they took her into the operating room and began her sedation.  When I left the room I met my husband and my son In the hallway. We sat in the waiting area near the operating room to discuss where we should go while we waited.  Within minutes the doctor came down the corridor and told us to stop.

Something had gone wrong.  They discovered at the start of the angiogram that there was no blockage, but her right carotid artery had completely closed and she appeared to have a very rare disease called MoyaMoya…

When we met with the neurosurgeon, he explained the typical treatment to help MoyaMoya patients was a surgery called revascularization…

From the moment we arrived we were assured we were in the place to get answers.  But as the teams of specialists studied her imaging for days they began to agree not to perform the brain surgery.  

Why? Because they were baffled.  Sophia's imaging showed severe damage to the right side of the brain.  These images revealed that the extensive damage done from the strokes would result in her permanent loss of use of her left side.  She would never walk again. Never use her left arm again. She wouldn't even be able to hold her own head up.

So why were they baffled?

As they observed the recent images of Sophia's brain, in comparison side by side, they showed her brain healing itself. 

As these doctors took repetitive images and compared the images side-by-side, they were baffled because Sophia began to revascularize her own brain without the surgery.

They were baffled because her brain began to show new blood vessels forming in the brain on the right side and they could not understand how. 

We were told that her brain was doing in days what only surgery can do and would take four to six months.

When Sophia and I arrived at the appointment with the neurologist he told Sophia "I heard about you. I've read about you and I've seen your images. Let me tell you something little girl, you're not doing the things that the medical books say you should be doing. So why don't you tell me how are you doing this. How are you holding your head up and moving when you shouldn't be able to?" 

Of course Sophia smiled and confidently said "Well, because I'm awesome that’s how!" 

He asked "I've been hearing a rumor Sophia, that you can stand on your own.  Is that true? Because I've seen your images and you shouldn't be able to do that, but I heard that you can." 

Sophia replied "You want to see what I can do? I'll show you what I can do." 

I told her to make safe choices as she locked her wheelchair and swung open the wheelchair legs. She stood up, took about 11 steps, turned around, and walked back to her wheelchair, sat down, raised her arms,  and said "Ta-da!"…

They have come to the conclusion that Sophia has MoyaMoya like symptoms but not actual MoyaMoya. The stroke team has concluded that Sophia has a "unknown genetic vasculopathy" which is another way of saying they don't know exactly what it is that she has, because it can't be identified. What they do know is that the blood vessels within her brain or slowly narrowing. They don't know why and they cannot stop it.

There is no cure for Sophia's condition. Sometimes the imaging shows that there is no more additional narrowing. Sometimes the images show that there has been an increase in the narrowing….

During the holidays in 2016, Sophia began suffering minor strokes again. New imaging showed that the left carotid artery artery and the right posterior artery were closing more.  The need for an alternative blood supply source outweighed the risk of surgery. 

The dural revascularization surgery was performed on February 6.  There was an chance that she would not survive the surgery without a stroke possibly killing or permanently paralyzing her. 

Once again this little girl came through miraculously. One of the neurosurgeons stated "This little girl has God on her side."

Sophia has been in the great hands of the stroke team at Cook Children’s Hospital for two and a half years now.  Our trust in these doctors and staff is immeasurable! …

When Dr. Stoic and Dr. Flower informed us that we would be needing to go to Boston Children’s Hospital for her next procedures, Sophia was apprehensive.  She said she didn’t know anyone in Boston and they didn’t know her, but her team helped her understand that she needed to go because Boston could perform a surgery they don’t do at Cook Children’s and she needed to know they were “on board” with her going and the time had come for her to put her trust and confidence in Boston Children’s Hospital and they would still be there for her for anything she or Boston needed…

On January 23, 2018 we will meet the staff at Boston Children’s Hospital for the first time.  BCH is known as the number one pediatric neurosurgery hospital In America.  We can’t imagine anyone better than Cook Children’s Hospital, so with that knowledge we are put  at ease a bit.  

Sophia will be undergoing more genetic testing soon and Cook’s will remain our support system after surgery when we return to Texas. 

God has steered us everywhere he has wanted us to be.  Next turn is to Boston.

https://ninjakittensophia.com/