Libby's Story

In the past several weeks we have met two new doctors, two new therapists, and Libby has attracted several admirers.  She seems to gather people to her and each one, whether new professional or random passerby wants to know her story.  It used to feel like a bite was being taken out of me every time I told the story.  Now, it is a review process that allows me the chance to remember and remind myself of how far we have come.

Libby was born on her due date perfectly normal.  She had RSV a couple of times as was going around in 1999, other than that no problems.

She met every cognitive and physical measure early including crawling out of her crib at 9 months.  She was so adventurous that she could have been hurt many times.  Libby loved to climb and hide. She would climb up anything she could, including bookcases, weight racks, and later tops of cars and trees.  She earned the nick name "Eagle Eye" as she is able to see things others miss. 

If there was a way to push the boundary, she would find it. She is the personification of her name in every way.  She didn't care about rules and hated being told to speak to people on command, and Lord help you if you wanted her to hug someone.  Liberty didn't perform on command.  Now, let her listen to a song once or twice and she would memorize it.  By four I could challenge her to see if she could memorize a song faster than me.   I could begin a song lyric and she would finish it.

We were outside people. We camped, hiked, worked in Palo Duro Canyon, and Geo-cached everywhere we could.   It was no big deal for us to play in the water in the Canyon, or return from hiking, and then check each other for bites.  It's awkward, but it is what you do, especially when the grasses are taller than your kid.  This is the Texas Panhandle and if the heat and cold don't kill you, then there are plenty of things that'll bite you.

5th grade, Libby was Commended in her Reading, was rocking her trumpeting skills in band, singing in front of everyone every week at church, and working on her basketball skills. The math and physical coordination genes did miss this kid.  Math and coordination did not come naturally. Socially, she preferred animals to people and would rather play than play girly stuff.  She is my little wolf.  

The night we returned from our last big camping trip, where we had been to Southern Utah in 2007 and Libby had what we believe was a seizure.   Mariah woke us up and seeing Libby mid-seize on the top bunk changed everything.  We headed to the nearest hospital by ambulance and our testing trials began.  Even though there was blood taken, there was little analysis and we were only given advice to get her seen by someone who deals with seizures.  We brought up several times the long camping trip and the land, lakes, and streams we had been swimming, fishing, and hiking in.  

The next morning we were sitting in our pediatrician's office and were then sent with referrals to get the EEG and EKG to see if there was anything neurologically wrong.  Over the next year Libby had visited hospitals in Amarillo and Lubbock had three more seizures, many EKG and EEG's, MRI's, sleep studies, and lots of blood work.  Nothing.  Everything came back normal.  We carried paperwork that stated she had an Undiagnosed Seizure disorder.

In November of 2007, Libby's Grandpa Collins left us.  She didn't cry for months.   She stopped drawing and writing her stories.

The next year, 2008-2009, 6th grade seemed fairly normal. August, 2008, we lost her Grandfather Jennings. Her big sister, Mariah, was a senior and the world was changing, so normal may be the wrong term.  Looking back there were many signs that something was affecting Liberty neurologically.  You don't know what you don't know. Her speech showed some weirdness, where she would drop off parts of words.  Interestingly, her singing remained outstanding.  Her ability to play her trumpet at the high level she had before remained the static, except for sometimes she showed an inability to sustain the breath needed.    Her handwriting got weird, really weird.    But this is the kid who invented her own writing that was only to be read by animals with paws when she was three or four, so weird handwriting- eh.  She started sneaking spoons to school in her lunch box instead of forks.  She also started using bendy straws, we call them "sick straws" as well.  Her shirts had some weird stains and I would find them hidden in weird places. She tried to shave her legs for the first time and called me crying because she had cut her leg, also not unusual.  Now, when she decided to use a razor to trim her eyebrow and called me with a thug looking brown into the bathroom, I took the razor away from the kid who was shaking.  Once we made it through Mariah's graduation and summer hit, we got Libby into singing lessons.  We did elocution practice at home, as well as some handwriting review.  We spent that summer building up Libby's self-esteem.  (I thought she was acting out because of the loss of her Grandpa and her sister graduating.)

I noticed a tremor in her hands and started watching her blood sugars and eating patterns.  Diabetes runs in my family. I noticed that she spilled food a lot and had trouble drinking unless she used a straw.   She had probably been having hand tremors for a while and had hid it.

In July, 2009, she started her menstrual cycle.  In August she passed her yearly Pediatric check-up and we were reminded to keep an eye on her emotions as she may be depressed and reacting to Mariah and many changes.  She also passed her athletic physical to play basketball and tennis.

We went on a regular hike, a long hot hike, and I basically had to carry Libby back.  She said her left leg hurt and didn't feel right.  I thought she was being a princess butt and was tired.

7th grade started and her teachers began contacting us about changes they were noticing in Libby.  She was referred to a local psychiatrist.  I made an appointment for the middle of October to check in with our Pediatrician. The school's diagnostician did some cognitive tests and called me on October 2, 2009, my 39th birthday.  She said that she thought that what was going on with Libby was biological and that she thought something was wrong.

By the end of the first six weeks of her 7th grade year, 2009-2010, Libby was falling a lot, her left arm was curling in whenever she ran, she couldn't get a spoon to her mouth, she couldn't rinse out her hair, her handwriting was illegible, her speech was disintegrating and she collapsed one day on the way home from school.  An ambulance brought her to the nearest clinic, her Pediatrician's clinic and all tests showed nothing.  She must be very tired.

We saw our regular doctor and then more test at the hospital in Amarillo, then on to Lubbock.  The Neurologist was in Lubbock, the same one that we had seen for the seizures. We were referred to Cook Children's in Ft. Worth.  We arrived on a Thursday evening in November, by now we are helping her shower, dress and feed herself.    That Friday, the first doctor we saw referred us to another and ordered tests.  We were to go home, pack, and return on Monday prepared for a long stay.

We were in the hospital for 14 days.  During that time every sort of test you can imagine was run. At first, they thought she had a very progressive form of early onset Multiple Sclerosis, or Huntington's, or a form of Palsy, maybe she had gone through multiple strokes, ALS, Wilson's, Meningitis, HIV, and more that we cannot even remember. Libby had blood tests, EKG, EEG, Lumbar puncture, Liver biopsy, more blood tests, and an MRI with and without resolution.

The MRI showed an area in her right frontal lobe the size of quarter which had undergone atrophy or necrosis.  Her brain was also smaller than it should be. Basically, that portion was dead and not working.  This area had been missed by all the other MRI machines she had been in.  The one at Cook Children's had more power or resolution.  What our doctor, Libby named him Dr. Hottie, said is that something had probably been killing that part of her brain for a long time and that she had slowly been losing her fine and major motor skills for all of that time.  It had finally reached a critical mass and that is why it seemed like she had fallen apart all at once.

Her Lumbar puncture showed something, a possible form of Encephalitis. He gathered a crew of specialists, including a Geneticist, who did all of the background testing possible.  Down to requesting the chemical results from our water system here at home in Happy.  They also had Carbon Dioxide detectors placed in our house just to make sure.  We asked again if she could have caught something during our outdoor exploits.

We were told at a staffing, think of the TV show "House", to start thinking about whether we wanted quality or quantity of life for Libby.  We were released on Thanksgiving Day, 2009, with two more referrals back home, therapy referrals, a prescription for a Parkinson's medication, Sinemet, and follow up appointments at Cook Children's.  We were told to get her baptized and prepare our family, at the rate her degeneration was progressing we didn't have much time.

The first appointment was a basic eye appointment further testing for Wilson's, or other genetic abnormalities.  Christmas happened.  New Years happened.  We were in shock and grateful to be home.  My little wolf cub doesn't do well in captivity.  On January 2, we saw an Opthmologist.  After going through the whole background, he performed his regular eye exams and asked if she had been tested for Lyme disease.  He ordered blood tests, didn't know eye doctor's could do that, for Cat Scratch Fever, Lyme, and Rocky Mountain Spotted Fever.

January 10, 2010 the results came back positive for Lyme through the ELISA Lyme test.  I called our doc at Cook Children's and left a message about the results.  He called back and said this could have been caused by Lyme. Our local Pediatric doc and Dr. Hottie agreed to a two week course of antibiotics to cure her of Lyme.  That is what the American Medical Association, AMA, recommends.

She wasn't cured.  We began researching immediately and found that there are cases world wide of terrible unexplained illnesses that have been traced back to Lyme. We also learned of governments' world-wide not treating Chronic or long term Lyme.   We also learned that there should have been a bulls-eye rash followed by flu like symptoms, although the bulls-eye rash does not appear in about half of the Lyme cases.  Libby never had a rash.  When camping, we showered in two's.  After hiking we checked each other.  Many, many cases of Lyme go unnoticed because there is no rash and no flu like symptoms.   We also learned that Lyme was rare in our area.  We also learned that many people die because Lyme likes to attack hearts.  Libby's heart is still good.  Her neurological state has been decimated.

We have continued to get our main treatments and testing done in Ft. Worth.  Each time there may be a new specialist to meet, different tests to be done, new meds to try, something.  In 2012, we met with a Pediatric Rheumatologist and an Immunologist.  They ordered a PIC line and a six week protocol of heavy duty antibiotics, since that was then what the American Medical Association recommended for tougher cases of Lyme.  She wasn't cured.

She has never tested positive for anything else.  Most gratefully she has not had any other seizures.

We have had our genes mapped and there is nothing genetically wrong with her.  She has been diagnosed with Secondary Parkinson's, Spasticity, Ataxia, Speech Apraxia, and my least favorite, Dystonia.   On medical paperwork she has Arthropod Borne Encephalitis.   Because her body has progressed in its muscular retraction and contraction, Libby now has Deep Brain Stimulator's.  We get the battery charge adjusted every three months, along with Botox injections.

She has had two sets of AFO leg braces, lots of hand braces and a neck brace.  We are on our second wheelchair and are looking into a third. we have gone through three different therapy places and are starting on our fourth.

She takes Sinemet, Baclofen, and Chlonazepam.  What started as a turned in left hand, has travelled to her left leg, then foot, then right hand, then right leg, the right foot, and her neck.  Parkinson's has given us an additional gift with swallowing issues that are made worse by the Botox that loosens up the rest of her body.

Libby's left foot has reached 90% Achille's contracture and we will be having bi-lateral tendon release in just over a week.   Then we can work on walking more.  We may also have a similar surgery done on her hands.  Anything to help her move better.

Before her DBS she wanted to dance at her prom and walk the stage, she's done both. 

Tomorrow we go for her required Department of Aging and Rehabilitative services Neuro Cognitive testing.  They have to prove whether or not she is employable in order to provide services.  We have to go through DARS to help get services for Libby and college.  DARS is the gatekeeper to many services for Libby.   We really still don't know how life after high school will look for her, but we do know that she will have a life.

Liberty wants to be an artist.  Her body is degenerating at a progressive rate and yet her mind and her personality are still there.  She has hopes and dreams and is the toughest person I know.  This is not my story to tell, this is hers.  We are still learning Liberty.