2007-Liberty was normal and healthy through the age of nine. At this age, she had three seizures starting that summer and ending within that year. The first one was the night after we arrived home from a family camping trip to Southern Utah.
2007-2009 lots of tests in Amarillo, and then Lubbock, to verify and find the cause of these seizures. They simply went away as many undiagnosed seizure disorders do in preadolescents.
Life rolled on ebbing and flowing through her upper elementary years.
2011- In the spring we noticed Libby’s handwriting getting harder and harder to read. We also noticed that her speech was changing. We assumed that she was lacking confidence as her world was changing; the loss of her grandfather and her sister getting ready to graduate.
We got her into voice lessons and really started paying closer attention to our little one.
2011- In the fall she passed her physical fitness test and her yearly physical. She started her menstrual cycle. Life started our great.
She starting stumbling and falling. Was sneaking the bendy straws and spoons with her lunch. Her handwriting was mostly illegible, and her grades were low. Her locker and backpack were a complete mess. We requested testing for learning disabilities thinking that those seizures could have messed up her wiring. Or something else.
October 2, the diagnostician called on my way home. She had completed the testing and told me that she believed there was something medically wrong. We were encouraged to take Libby to a doctor. We did just that.
Libby collapsed walking home from school. Neighbors witnessed the fall; her legs quit working. Fastest drive from Caprock to Happy ever.
We went from a family doctor to NWTH, to Lubbock Children’s for lots of testing and no answers. The Lubbock doctor said he didn’t know what was happening, but it was severe. Libby’s motor skills were degenerating as if she had a traumatic brain injury. We were referred to Cook Children’s in Ft. Worth.
Libby was no longer feeding or bathing herself. We were helping her dress. She couldn’t be left sitting alone.
November- first visit and the first round of doctors scheduled a few basic tests and scheduled us to return in a week. We did. We drove home and decorated our house for Christmas. I didn’t want to return home and not have that tradition glowingly greeting us.
Libby was checked into the hospital and there we stayed for ten days. A few things they tested for were: MS, ALS, HIV, cancers, Huntington’s, Wilson’s, Cerebral Palsy, and Muscular Dystrophy. Tests done included lots of blood work, scans, lumbar punctures, and a liver biopsy.
Libby continued to lose more and more of her faculties. We were released with no answers about what was happening, but lots of info about what she didn’t have. The doctor told us to get her baptized and prepare our family as they didn’t know what was happening.
We drove home on Thanksgiving Day and shared chicken nuggets from Allsups.
We tried to keep her happy, but she is a little wolf girl in captivity. She does not flourish in the hospitals.
One test was completed in Amarillo on order from our new doctor: eye scans. It was the eye doctor who also tested for Cat Scratch Fever, Rocky Mountain Spotted Fever, and Lyme. The Lyme came back positive. That is and remains the only positive test result we have ever received. There was never a bulls-eye rash, nor any flu symptoms.
2021- January finds us celebrating our little one. She now has the neurological and muscular diagnoses of secondary Parkinson’s, Bladder sphincter dyssynergia,
dystonia, spasticity, ataxia, speech apraxia, and currently wasting.
She has been on a five pill-a-day schedule for years; her main one is the Parkinson’s drug. She has a baclofen pump, as of last Thanksgiving. And Deep Brain Stimulator which we charge every other day.
As of Thanksgiving 2019, she has a gastric feeding tube to combat her wasting. She can swallow some very soft foods, but chewing solid or crunchy foods, along with soupy foods doesn’t do well. Because of her spasticity and dystonia, she is burning many more calories than we can get into her by mouth, so we use the feeding tube several times a day. Her weight had been steady for almost a year.
We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water. At our doctor’s suggestion, we gave up on the Botox injections. She was getting such high doses without any discernible relief. Libby’s body continues to stiffen and struggle.
We now know that her conditions are all progressive and degenerative. Our biggest fights are wasting and spasticity. Her ability to say full words has dissipated. She can sometimes say one-syllable words like “hi” or “no,” or vocalize the beginning of words.
Yet, our songbird continues to hum along and somewhat sing to so many songs. Most of the time, she can squeal, laugh, and fuss. Grateful to have some communication with her.
Nothing is promised. Sometimes bad things happen for no reason. Every day we are blessed. This is our bonus time with her and ourselves. One day we may know exactly when she got the bite or where, but I doubt it. I won’t hang my hat on that kind of answer. Instead, I will focus on how well I’ve taken care of her and how happy she is.
Be blessed and realize your blessings. Love you all.
