Kaden's
Story

In 2018 when my son Kaden was 4 months old we noticed Kaden didn't have good head control and still wasn't enjoying tummy time. I decided to take Kaden to a pediatric physiotherapist to help us with tummy time and get better head control. When we had our first appointment with our pediatric physiotherapist, she was doing her assessments on Kaden and she suggested for us to get a pediatrician review to do an overall health check assessment on Kaden. 8 weeks later we had our first appointment with our pediatrician. While the pediatrician was doing his assessments on Kaden, he noticed Kaden had a large head circumference, which put him in the 95th percentile. The Pediatrician referred us to get an ultrasound sound done on his head. Few days later we went to get the ultrasound of Kaden's head done. The day after the ultrasound, our pediatrician called to say he has received the result from Kaden's ultrasound and there are some abnormalities around Kaden brain and Kaden needed to go for an MRI Brain for further investigation. We waited a couple of months for our MRI appointment, by this stage Kaden was 9 months old. Kaden had his MRI and we waited for 3 weeks for the result. Our pediatrician called to say that he has received the results of the MRI and asked us to come in that afternoon to see him. The results showed that Kaden had Periventricular White Matter Loss with Ventriculomegaly and thin corpus callosum. Our pediatrician referred us to a neurologist. February 2019 Kaden was 14 months and by this stage Kaden was still non mobile and had only learnt to roll. The same month we also had our first neurologist appointment. Neurologist sent us for further blood test and also diagnosed Kaden with Kyphosis. April 2019 Kaden has two episodes of suspected absence seizures that lasted 20 - 30 seconds each time. We informed our pediatrician who sent us for an EEG. We took Kaden to have an EEG and they came back all clear. July 2019 Kaden was 20 months old and just started to learn to sit unassisted and commando crawl. Kaden was still on a puree diet and he was having difficulties swallowing solid foods. August 2019 we went back to see the neurologist and said Kaden's blood all came back clear so she referred Kaden to have another MRI to see if there are any changes from his old MRI and also referred us to genetics. September 2019 we saw genetics for the first time, they did their assessment on Kaden, myself and my husband. Genetics also sent us genetic blood test. When the time came for Kaden to have his MRI time COVID-19 had hit and his MRI got delayed. March 2020 Kaden was 2 years old and 4 months. Kaden was able to say up to 20 single words. August 2020 we went to see our neurologist for a check and review, during that appointment we had received an email from Kaden's genetics specialist to say his genetic testing came back all clear. At this stage we were still waiting to have an MRI to see what our next steps were. March 2021 Kaden was 3 years and 4 months old, we finally got the call to say Kaden can come and have his MRI. The next week we went into hospital and Kaden had an MRI brain done. April 2021 we went back to see our Neurologist for the result of Kaden's MRI. Kaden's MRI result was stable and no changes from his previous MRI. Also by this stage Kaden was starting to say 3 - 4 sentences. April 2022 Kaden was 4 years and 4 months old, we went back to see Kaden's neurologist for an yearly check up and review. Our neurologist felt that Kaden's symptoms were more genetic and referred us back to genetics. May 2022 we saw a team of developmental pediatricians and clinical neuropsychologists conduct assessments on Kaden to see if he was ready to start school in 2023. During the assessments the team felt Kaden was not ready for school and could benefit from another year of intense therapy to help him be more prepared for school in 2024. The assessment also showed that Kaden was showing early signs of ASD but didn't want to formally diagnose him yet but for him to come back in a years time to do the reassessments again. We started the process of applying for exemption for Kaden to not start school in 2023 but instead 2024. September 2022 we went back and saw our genetic specialist who referred us to get the same genetic blood testing again. November 2022 we found out our application was successful to get an exemption for Kaden not to start school in 2023. March 2023 Kaden was 5 years old 4 months we went back to see a genetic specialist as she had our genetic results. The genetic testing result showed that Kaden has TUBB3 and also my husband has TUBB3. It took 5 years of appointments, tests, assessments to finally get a diagnosis for my son. The next month in April Kaden re-did his assessments for Autism and this time it was my clear for the team to diagnose Autism Spectrum Disorder - Level 2. Within 2 months we were given 2 diagnoses for him. February 2024 can start his first year of school in kindergarten. He goes to a mainstream but is in an Autism Support Unit class. Kaden is loving school. Kaden didn't start walking independently until he was 3 years old. At the aged on 2.5 when he could start to weight bear he was using a walking frame to help him walk and get around. Kaden also wear AFO's and SMO's to assist with him being my stabled when walking independently. This is our story, our story that still continues.