Zachary was born on July 24, 2013. He was born at 39 weeks. I was induced not due to health problems, but my OBGyn was going out of the country and wanted to make sure she was there for the delivery. We went in the morning of July 24th. I started on Potocin, and they broke my water about 8 am. Around noon or so, I started pushing. Zachary was sunny side up and wouldn’t stay flipped the right direction, They ended up using forceps to get him out.
Zachary was born tongue tied, so breast feeding was hard for him. At a month old, he had a Frenotomy. That was the first of many hospital visits. He was a good baby that never cried, only if he was hungry or dirty. At about six months old I noticed unusual activity with his eyes. They would bounce or move back and forth. I mentioned something to his Pediatrician, but at the time he was being treated for Torticollis. A month or so went by and he started to have unusual activity with his head and torso. He was trying to crawl and get up on his own and every time he would he would either fold or hit his head.
By this point his father and I were getting extremely frustrated feeling like the Pediatrician wasn’t listening. She finally did listen and sent us to see a Neurologist at Children’s Mercy when he was one year old. They diagnosed him with Epilepsy and he was started on Keppra. Once he was on seizure medicine, he started reaching milestones. He started walking around 15 months, but he was extremely clumsy and would fall a lot.
They ordered and MRI and an EEG. The MRI came back normal. The EEG showed seizures and abnormal activity coming from all over his brain. They also thought he had Transponder-D Deficiency and did a Spinal Tap. That also came back normal.
He still wasn’t meeting milestones like he should, so we started early intervention, first steps. He received Occupational Therapy, Physical Therapy, Speech Therapy, and a Special Education Therapist. He made progress, but extremely slow. At age 3, he aged out of First Steps and was referred to our local school district to start early childhood education.
He was extremely social, but still wasn’t talking and still was extremely delayed. So we started private therapy: Physical Therapy, Occupational Therapy and Speech Therapy. He still currently receives all 3. Zachary has an extremely high pain tolerance. He started having behavioral issues and we were referred to different clinics to try to get an Autism diagnosis. Two clinics said he didn’t have enough points to continue on with the evaluation, but one finally diagnosed him with Autism and ADHD. We started seeing a Psychologist to try to help with his behaviors. Then a Psychiatrist to start a medication regime to try to help him focus and stay a little calmer. Zachary is go-go-go from the time his little feet hit the floor till he gets his sleepy time medicine and goes to bed.
In July of 2019, Neurology suggested we do another genetic test . He had had a microarray and a full seizure panel, of which both came back normal. This time it would be a tri test. The results came back in October 2019 and showed a de novo KCNB1 mutation. We then started on this new journey; the journey of the unknown.
Zachary is currently in first grade at a public school with an amazing para professional that treats him like her own. He has met many accomplishments and hit many milestones. We were told he would never walk or talk. He runs, with an awkward gait, but he gets around and boy can he get after it when he wants to. He talks mostly one to two words, but he tries so hard and is trying to talk in sentences. We have added horse riding therapy as well as music therapy to his therapy schedule.
He still has behavioral issues that I hope to get to the bottom of soon. He has meltdowns, gets angry, and bangs his head and gets aggressive. I can only imagine how frustrating it is not to communicate the way he would like to.
Zachary is an amazing 6 year old boy. He is so loving and full of life. He loves animals and the outdoors. He loves to share and make people smile. He's definitely a lady’s man and he loves to flirt, especially with the nurses when we have our stays at the hospital. Everyone that has had the chance to get to know him and be around him falls in love with him. His smile and laugh will light up a room.
We have a long way to go, but I have faith he will accomplish a lot more in his life and he sure has taught this Momma a lot about love and compassion, to take life as it comes and to not expect too much at once. Patience is definitely something else I have learned. This life we live is busy with doctors and therapists and it’s no cake walk by far, but I wouldn’t rather be anywhere else than by my little guys side.
Zachary was born tongue tied, so breast feeding was hard for him. At a month old, he had a Frenotomy. That was the first of many hospital visits. He was a good baby that never cried, only if he was hungry or dirty. At about six months old I noticed unusual activity with his eyes. They would bounce or move back and forth. I mentioned something to his Pediatrician, but at the time he was being treated for Torticollis. A month or so went by and he started to have unusual activity with his head and torso. He was trying to crawl and get up on his own and every time he would he would either fold or hit his head.
By this point his father and I were getting extremely frustrated feeling like the Pediatrician wasn’t listening. She finally did listen and sent us to see a Neurologist at Children’s Mercy when he was one year old. They diagnosed him with Epilepsy and he was started on Keppra. Once he was on seizure medicine, he started reaching milestones. He started walking around 15 months, but he was extremely clumsy and would fall a lot.
They ordered and MRI and an EEG. The MRI came back normal. The EEG showed seizures and abnormal activity coming from all over his brain. They also thought he had Transponder-D Deficiency and did a Spinal Tap. That also came back normal.
He still wasn’t meeting milestones like he should, so we started early intervention, first steps. He received Occupational Therapy, Physical Therapy, Speech Therapy, and a Special Education Therapist. He made progress, but extremely slow. At age 3, he aged out of First Steps and was referred to our local school district to start early childhood education.
He was extremely social, but still wasn’t talking and still was extremely delayed. So we started private therapy: Physical Therapy, Occupational Therapy and Speech Therapy. He still currently receives all 3. Zachary has an extremely high pain tolerance. He started having behavioral issues and we were referred to different clinics to try to get an Autism diagnosis. Two clinics said he didn’t have enough points to continue on with the evaluation, but one finally diagnosed him with Autism and ADHD. We started seeing a Psychologist to try to help with his behaviors. Then a Psychiatrist to start a medication regime to try to help him focus and stay a little calmer. Zachary is go-go-go from the time his little feet hit the floor till he gets his sleepy time medicine and goes to bed.
In July of 2019, Neurology suggested we do another genetic test . He had had a microarray and a full seizure panel, of which both came back normal. This time it would be a tri test. The results came back in October 2019 and showed a de novo KCNB1 mutation. We then started on this new journey; the journey of the unknown.
Zachary is currently in first grade at a public school with an amazing para professional that treats him like her own. He has met many accomplishments and hit many milestones. We were told he would never walk or talk. He runs, with an awkward gait, but he gets around and boy can he get after it when he wants to. He talks mostly one to two words, but he tries so hard and is trying to talk in sentences. We have added horse riding therapy as well as music therapy to his therapy schedule.
He still has behavioral issues that I hope to get to the bottom of soon. He has meltdowns, gets angry, and bangs his head and gets aggressive. I can only imagine how frustrating it is not to communicate the way he would like to.
Zachary is an amazing 6 year old boy. He is so loving and full of life. He loves animals and the outdoors. He loves to share and make people smile. He's definitely a lady’s man and he loves to flirt, especially with the nurses when we have our stays at the hospital. Everyone that has had the chance to get to know him and be around him falls in love with him. His smile and laugh will light up a room.
We have a long way to go, but I have faith he will accomplish a lot more in his life and he sure has taught this Momma a lot about love and compassion, to take life as it comes and to not expect too much at once. Patience is definitely something else I have learned. This life we live is busy with doctors and therapists and it’s no cake walk by far, but I wouldn’t rather be anywhere else than by my little guys side.