After months of testing, while Libby lost the ability to walk, talk, and feed herself, and many, many specialists we had a positive. She tested positive for a test that the eye doctor had ordered; positive for Lyme disease. That doctor's nurse was happy to tell me that after a round of antibiotics she should "be just fine". I called our Neurologist and told his nurse. We got an excited return call as Dr. Acosta believed that she would return to a new kind of normal if we could stop the brain atrophy from continuing.
We began massive amounts of research and queries into what we now know is the world of Lyme. Because the American Medical Association doesn't believe that Chronic Lyme exists, there aren't accessible treatments. In the eastern and south eastern parts of the U.S. Specialists exist that believe that even after Lyme has been attacking the body for years you can be "cured". Libby has had several regular rounds of antibiotics and IV antibiotics for 30 days. Nothing changed. You can't grow back part of the brain that has died.
**New research continues for Chronic Lyme.
Our reality is different. Lyme gave us a seriously atrophied brain and a greatly compromised neurological system. Then came the diagnosis' of Parkinson's, Dystonia, severe spasticity, ataxia and speech apraxia. Cycles of meds, tests, medical staffing, more tests and new meds have left us with a pretty good idea of where we stand.
Our most recent evil gift is Detrusor Sphincter Dyssynergia; Libby's brain and her bladder/colon do not communicate on a consistent basis. A bathroom, fluid/food schedule, and preparedness are our current method of defense. I have to admit that this part sucks on a whole new level.
She's had years of speech, physical and occupational therapies that have given me a love/hate relationship with these wonderful professionals. Mention "therapy" to Liberty and she will give you an ugly look.
Sometimes I wonder what our life would be like if we didn't get that initial diagnosis. Would she still be here? What treatments and meds would we have pumped her full of trying to keep her alive and going? Knowing your enemy is better than not.
The good news is that her brain has been stable and no new signs of atrophy since the last scans. Not willing to lose more of her.
The other news is that Parkinson's and Dystonia continue to ravage her body, but we have an every three month regimen of Botox, five time a day pill schedule, and her Deep Brain Stimulators that we check/charge daily.
In the future she may get a baclofen pump and maybe surgical relaxation of her hands.
Most importantly is that she is stil here. Her beautiful personality shines past everything. There are things that happen in life that truly aren't fair. Things happen that just suck and that aren't deserved. I have taken the blame for her infection and her illness in the eyes of many. I wish I could take her illness from her, but I can't. I would give anything to carry this for her, but I can't. I can only continue to be her voice, her muscle, and her advocate.
In the six years Libby graduated from high school, I completed two Master's Degrees, Rachael has almost completed her Doctorate, and after several changes in degree plans, Mariah is nearing the end of her college time. I can't say that I have regrets for the last six years as I believe we have done our very best for Liberty medically, socially, educationally, and emitionally. There are so many things that could have happened to this child and I am always grateful to have had the chance to fight for her.
We continue to be blessed and know that we make choices everyday to live the best life we possibly can and to not let our circumstances determine out outcomes. I believe in hope.
Happy diagnosi-versary.
