2019 Just for J DENVER Spring Recipient
Klohe was born on April 4, 2014 at 4am in the morning. What an angel already! A few hours after birth they took Klohe back to do her newborn screening and came back to tell me she failed her hearing test and that they would be back in a few hours to try again. They ran the test again and results were still the same so they sent us to a specialist. At 1 month of age, she was diagnosed with deafness, profound to severe. At 3 months of age, we were out on a small hike and Klohe slept the entire time. I thought it was normal, but as soon as we got home I knew something was wrong. I checked her temperature and sure enough it was 103 degrees. I rushed her to the hospital (which was an hour away) and by the time we got there her temp was 104.5. Klohe was admitted for 2 weeks as they were trying all tests. All tests came back negative, so they ruled it viral. About 2 weeks after being released, she started having episodes were she began blinking her eyes, then stretching out her limbs, and then her entire body would become extremely stiff. I, of course, jumped onto Google to start research to see if there was a cause for her "actions". Everything I read said these episodes were called infantile spasms. I knew I needed answers and I had the spasms tracked so that I knew when she would have them. I asked my mother to take Klohe and myself to the ER, so they could run the EEG during a spasm to get confirmation if these were seizures or something else.
They admitted Klohe into the hospital and started a 2 hour EEG. During the EEG I didn't see a single seizure. So I asked if we could run it longer. The doctor informed me that Klohe has been seizing the entire time and that I was correct. She was having infantile seizures.
She was put on a medication that they called the "moon face” drug. At the time, I did not understand what they meant. Then slowly throughout the first month of the medication her face swelled and got chunkier. She was on the Prednisone for 6 months and the moon face got worse. She was so swollen that she almost couldn't open her eyes. I was so happy when she was taken off of the Prednisone. They followed up the medication with another EEG. We found out that her infantile spasms had changed into myoclonic seizures and that her brain was smaller than average (Microcephaly). Klohe started losing muscle tone. She lost her ability to control her head as well as the strength in her arms, legs, and back. She was later diagnosed with Infantile Idiopathic Scoliosis. Watching her lose her muscle control was hard.
At 1 year of age, Klohe had an eye exam. This exam was only suppose to be 30 minutes but turned into 2 hours with a diagnoses of cortical visual impairment (CVI). CVI occurs due to brain injury, and it had left her legally blind. At this time, she also had a swallow study done where they found she was silently aspirating. Her pediatrician wanted her admitted immediately to have an nasojejunal (NJ) tube placed until we could have her surgery done for a G-Tube placement. She was hospitalized for 2 weeks as we waited. During this time, they ran a barium test to check and see if she was also having reflex. Sure enough she was. So, as her G-tube was placed, they also did a nissen fundoplication to treat her reflux. This means she has lost her ability to eat by mouth.
At 2 years of age, Klohe was diagnosed with Cerebral Palsy and Lennox Gastaut Syndrome (LGS). She was the youngest child to be diagnosed with LGS, as normally it's diagnosed around 4 years of age. Children affected by LGS experience several different types of seizures.
At 2 1/2 years old she was put on a diet called the Ketogenic diet. This is an all fatty diet where your body runs on ketosis. It is suppose to help with seizure control, however, you are suppose to be on it no longer than 2 years, as it will start deteriorating the bone slowly. Klohe was on it longer than 2 years, and it cause more damage than it should have. I asked multiple times to have her taken off, but it literally took her near death for them to agree. It was killing my child! Klohe was in and out of the hospital for days or weeks at a time for a year. At one point she was throwing up blood and was air lifted to Children's Hospital. That's when I said enough was enough. I'm not losing my baby and I almost did! This caused her to become anemic, have potassium issues, GI failure, and so on. Due to the GI failure, Klohe had to have a gastrostomy-jejunostomy tube (G-J Tube) placed, as the stomach had given up.
September 6th, 2018 was her last day in a hospital. She is off the keto and now onto an all natural healthy blended diet of Kate Farms formula! I can't say enough wonderful things about this! She is starting to show progress and getting a chance at life! Klohe is now 5 years old and plays in a baseball league with other special needs families called Challenger Baseball. She loves the zoo and all animals! We call her the animal whisperer as she has gotten the monkey's to come to the glass to play, a tiger to talk to her, and birds to sing (all caught on video)!
Everyday with Klohe is a blessing. Throughout her life she has endured many hospitalizations, thousands of tests, and a plethora of medical diagnoses affecting nearly every system in her body. She is in a medical study because her condition is very rare. 1 of 1 as they say. They don't exactly know how or what to call her full diagnoses.
No Diagnoses defines her. Klohe is Klohe a gift from God, a miracle in the making!
You can help support our Spring Honorary Families, Klohe and Kinnick, by registering for our Clay Shooting Event. Click the links below for more information about how you can get involved!!!