It's been years since we've last posted, and a lot has changed. Kayli is now 15 years old. She's around 50 lbs and 39" tall, wearing size 10/12 clothes (she's still small but mighty!). In the last 9 years she has endured more life threatening illness and was granted many more miracles of life. The last couple of years have been especially trying. In Jan of 2022 she was admitted to the PICU for observation with (minimal) internal bleeding. While inpatient, she caught Covid pneumonia, 3 other bacterial pneumonias, and the hospital accidentally broke her arm. She was on nitric oxide, maxed out on the ventilator, and maxed out on all medical support. She was not expected to live. Miraculously, defiant against scientific understanding, not only did she make it through the night, her prognosis did a 180 and she came back home with us! The covid meds given to her caused severe liver and kidney damage that she is still battling today, 2.5 years later. She came home with a central line for IV medications and frequent blood draws to monitor and care for the ongoing life threatening electrolyte embalances.
In 2023 Kayli had a single symptom of a body temperature of 94 degrees farenheit (an unsurvivalable feat). She was found to be septic with bacteria in her blood and organs. She contracted AARDS while inpatient, was in septic shock, and maxed out on all medical support. They could not get her oxygen saturations above the low 60's (normal is mid to high 90's) even with all the medical support. She was not expected to live through the night. The hospital recommended her brothers come in to say their goodbyes. Again, she miraculously and scientifically inexplictably healed and came back home to us. Nine months later, we noticed an abscess on her back. We found that while the septic bacteria cleared from her blood and organs, it found a safe haven to breed on her spinal rods (foreign objects in her body). The absecess was drained in Sept of 2023 and again in Oct 2023 and the spinal rods were removed in Oct 2023.
Kayli was found to be septic again in May of 2024, due to 4 gut bacteria that leaked through her intestines and into her bloodstream. Once again, Kayli survived and is thriving, back home with us.
With the illnesses, came new challenges in balancing her new baselines. Kayli is very sensitive to medications, so we try to limit her scripts and often opt a more holistic approach when available.
The neurological damage to her brain throughout the years has been significant, starting with the initial insult to her brain, loosing 75% brain matter as she survived 32 minutes without oxygen at 4 months old. While it's true brain matter doesn't grow back, new pathways can develop. New pathways give way to hope for communication, reflexes, motor functions, and other skills once lost. We continue to strive to find ways to help her build new pathways, regain innate reflexes, and develop a way for her to communicate with us.
Some services and non-prescribtion medications that have greatly helped her overall health and brain function include:
-Neuro Chiropractor sessions
-Occupational therapy
-Physical therapy
-Speech therapy
-Vision Behavioral Specialist
-Vision therapist
-Special one of a kind, wrap around, moisture enhancing (sponges in the rims), and color tinted eyeglasses
-Adjustments for CVI visually enhanced environment (dark room, spotlight objects, visual de-cluttering, etc)
-Hearing therapy
-Aquatic therapy
-Simple Spectrum brain supplement
-Coconut oil (via feeding tube)
-DHA Omega 3
-Colliodal Silver (via feeding tube)
-daily vitamins
-Vitamin C supplement
-Mary Ruth's respiratory supplement
-Reflex Integration Therapy
-Vestibular learning protocols
-Music (with vibrating speaker, guitar, etc)
This year we've noticed Kayli has gained the following skills:
*muscle and thought coordination
*improved response time
*tight hand grasp
*thumb dexterity and grasp
*seeing with eyes individually as well as together
*turning her head to find people and objects out of visual field
*push with hand/s
*pull with hand/s
*hold on with both hands
*kicking her legs
*Forearm rotation
*Holding objects of different size/texture in different hands
*Elbow bending
In addition to the aforementioned services and supplements, we recently started giving Kayli Lion's Mane (a mushroom with brain clarity properties). We've seen immediate results! Kayli has been communicating a preference to go on the toilet vs stooling/voiding in a diaper, and she's swinging her arms to let us know immediately after "accidents" that she wants her brief (diaper) changed. And as recently as today, when being tilted on the exercise ball, she reflexively tried to catch herself (self correct her balance)!!! She moved her ribs, arms, and legs to catch herself! This is the first she's done this in a VERY VERY long time! The therapists and her teacher have noticed Kayli needs less breaks, is more attentive, and is able to coordinate her muscles in ways they've never seen her do before!
Kayli is currently working on enhancing communication, and bending her arms at the elbow quickly in response to swat flies or mosquitoes that land on her face (she despises anything on her face).
While it takes Kayli much longer to hit a select few milestones, we are blessed to savior the milestones as the miracles they are. We are grateful for the amazing and dedicated team that is helping Kayli blossom where she is planted.
