Jacob came into this world on October 17th, 2013 and his daddy (Kyle) couldn’t have been more excited about the birth of his son. There was a concern that he may have been born with an infection, so Jacob had to spend the first seven days of his life in the NICU. Once given the all clear, Jacob was discharged from the hospital and was finally able to go home. He was a beautiful, happy, and healthy baby! He dressed as a pirate to celebrate his first Halloween and as the weeks passed he was reaching all of his developmental milestones. He would smile and laugh, bring his hand to his mouth, coo, and hold his head up to look around this big new world.

 

     January 3rd, 2014 started out like any other day for Kyle, he got up early and got ready for work. He checked in on Jacob who was still sleeping and left around 5: 30 AM to get to work by 6 AM. Around 11:30 AM Kyle received a call informing him that Jacob wasn’t acting like normal and was pretty lethargic. Kyle immediately left work and rushed home where he found Jacob in his car seat set upon the dining room table. Immediately Kyle realized this situation was much more severe than what was initially indicated, Jacob was grey, cold to the touch, and unresponsive. Kyle grabbed his car seat and ran back to the car and rushed to the nearest emergency room. Once they arrived at the hospital, Jacob’s temperature was in the low 90’s and the hospital staff immediately began working to warm him up.  They attempted to place an IV in order to draw blood as well as hydrate him, which resulted in him being stuck 11 times until they were able to get the IV in place. They also performed a spinal tap on Jacob to run further tests, which to this day Kyle says is the hardest thing he has ever had to watch.

 

     It didn’t take long for the hospital to realize this case was better suited for the children’s hospital and they put in for a transfer to Arnold Palmer by ambulance. Once they arrived at Arnold Palmer the doctors reviewed the test results from the previous hospital and began performing their own. They tested Jacob for many different viruses and infections, but everything came back negative. The next morning, it appeared that Jacob was having seizures. As a result, an EEG scan was performed followed by a CT scan, and X-rays. Later on an ophthalmologist came in to check on Jacob. Kyle began noticing a shift in the atmosphere, specifically with this doctor because after evaluating Jacob he left without saying a single word. Shortly after this a hospital staff member came into the room and informed them that the police department and social services would be coming to speak with them. Kyle was an absolute wreck and asked what was wrong with Jacob and why they were coming but they just stated that it would all be explained when they arrived.

 

     About an hour later an agent from the Brevard County Sheriffs Office arrived at the hospital along with a social worker. They introduced themselves and then asked Jacob’s biological mother to go and speak with them in a separate room. After this interview was completed the Sheriffs Officer went back into the hallway and asked Kyle to follow her into another room. It was there that she informed Kyle that Jacob had been the victim of Shaken Baby Syndrome and that his biological mother had confessed to the abuse. A recording of the interview later revealed more details regarding that morning which indicated that around 9 AM while shaking a bottle to feed Jacob he was struck on the head. Jacob became upset and then would not eat his bottle. After becoming frustrated she picked him up with both hands around his mid-section and violently shook him causing his head to whip back and forth and then she threw him into his swing and walked away. After two hours she came back to try and feed him again. She skyped a family member to discuss how lethargic Jacob was, and that family member told her to take him to the hospital.

 

     Kyle was finally able to receive all of the results of Jacob’s testing and imaging which confirmed seizures, showed a left subdural hematoma, a broken collarbone (which was in a different stage of healing than the rest of his injuries), retinal hemorrhage, strabismus in the left eye, and right-side hemiplegia. He was informed that Jacob was not likely to survive his injuries and if he did, he would have permanent brain damage, developmental delays, and medical issues for the rest of his life. Once Jacob was released from the hospital he had a team of specialists for his medical care, and he began receiving early intervention services to aid in his development.  An MRI showed that the left side of Jacob’s brain had died due to the trauma and Kyle was given the option to have it removed in an attempt to stop Jacob’s seizures. At that time, Kyle did not feel this surgery was the best choice for Jacob and ultimately decided against it. After the trauma Jacob began missing all of his developmental milestones and he frequently became sick, even being hospitalized for RSV at one point. Eventually Jacob regained function on the right side of his body though it is weaker than his left side. He began smiling and cooing again and in early 2015 he even took his first steps! In 2015 he underwent the first of two surgeries to help correct the strabismus in his left eye. He has a scar on his left eye that has inhibited him from fully gaining control of his left eye, so even with the second surgery (in 2017) we were unable to correct it completely. He is severely far sighted but absolutely loves wearing his glasses. The very first time he put them on he looked at Madeline (Bonus Mom) and shouted “I can see!” He also had surgery in September 2015 to place ear tubes for the frequent ear infections he had been getting.

 

     In the Summer of 2016, he reached his two-year milestone of being seizure free. We opted to ween him off of his seizure medication (Topamax) to see if he had outgrown his seizures. Coming off of this medication was a huge turning point in Jacob’s development. He began talking almost immediately and his vocabulary surged! Where once we were only communicating by simple sign language, he was now able to verbally communicate, and we could hear his tiny little voice say so many new things. After a few weeks Jacob suffered a seizure and collapsed in Madeline’s arms and then slept for over 15 hours. He was quickly taken in for a one-hour EEG which showed quite a bit of seizure activity. We made the decision to put him back on seizure medication but wanted to try something other than Topamax since he had been making so much progress since coming off of it. We settled on Keppra, but unfortunately Jacob suffered some pretty bad side effects, and we made the switch to Trileptal.

 

     When he turned 4, he was one year behind developmentally, and we realized he would be better off in a VE Classroom instead of only receiving drop-in therapy at his previous school. He was placed in a special needs classroom to aid in his development in December of 2017. Once again, this change made a huge difference and his development began flourishing. In February of 2018 we noticed that Jacob was having staring spells and took him in for another EEG which once again showed seizure activity. This time however his seizures were happening on both sides of his brain instead of only the left side as they had been previously. Based on the change in seizures and the levels in his labs we decided to change his medication to Depakene. In 2018 Jacob’s last ear tube finally came out but the hole in his ear drum never healed. Due to this, Jacob had another surgery in October of 2018 to patch the hole left behind by the tube.

 

     By the time he entered Kindergarten in 2019 his developmental delay was less than 6 months behind a neurotypical child. Jacob was also diagnosed with Cerebral Palsy that year after being on the cusp of a diagnosis for several years. First grade proved to be difficult for Jacob and once again he started falling behind. We upped his services but when the pandemic hit and the schools shut down, he really began to struggle. Virtual learning was very difficult for him, by the time he even processed what was being asked they had already moved on to a different problem and he simply couldn’t keep up. His therapy services practically came to a complete halt and while we did our best to help him, it was apparent he was not getting the help that he needed. We also noticed some behavior issues starting to peak through and he continued to struggle with certain aspects of communication. Primarily, recalling things such as what he had for breakfast or what he did at school today. If he got hurt and we asked how he had gotten hurt, he was not able to tell us.

 

     In early 2020 Jacob once again reached the two-year seizure free milestone and we began discussions of weening him off his medication again. We were told if he failed this taper test that he would need medication for life. Due to the shutdown we decided to wait until after things had gone back to normal before doing the taper test. In November of 2020 Jacob underwent his yearly EEG and resumed discussions regarding weening him off of his medication. However, this EEG showed several spikes and activity resulting in a need to increase his medication. He has never had a clear EEG since. By the end of 2020 Jacob received a Psych Eval at school which showed that his IQ was incredibly low and aided in him receiving more services from the school. By the end of first grade Jacob had fallen pretty far behind in school and we opened the discussion of retention, however the district we were in had a mandatory retention in third grade and they did not want to double retain him, so they moved him up to second grade. Second grade proved to be even more challenging and even with an increase in services his delay continued to increase. His behavior issues also began to become more and more problematic. At this time, we decided to switch school districts and move back to Brevard County. At the end of second grade it was obvious that Jacob needed to be held back and we decided to pursue an evaluation for ADHD to address his behavior issues. In October of 2022 while being seen for an ADHD Evaluation it became clear to the doctor that there was something more going on and he instead began the process to evaluate Jacob for Autism. Two weeks later we returned to complete the ADHD Evaluation and after conducting those evaluations, receiving the questionnaire from us, and reviewing prior evaluations from Jacob’s school he received a formal Autism Diagnosis and ADHD Diagnosis. Since this is all so new, we are exploring options for ABA Therapy and the additional Occupational Therapy the doctors feel Jacob could benefit from. He will continue to receive Occupational Therapy, Physical Therapy, and Speech Therapy at school and has moved into a VE Classroom for the time being to assist in his learning delays. We will be happy to update this as our journey continues.

 

     We started Super Survivors Inc because we have always said that Jacob is so much more than what was done to him. He is not a victim; he is a survivor! He has fought so hard his entire life and we have always been right there fighting this battle alongside him, and we will continue to do so. The older he gets the more prominent his delays stand out and he has begun to realize that he is different from his neurotypical peers. He struggles to make friends and gravitates to adults more than children most of the time. We have found that music is a wonderful therapy to Jacob, and often state that it is his soul language. He loves to do arts and crafts and has recently began telling us that he wants to be an art teacher when he grows up. We work very hard to ensure Jacob has everything he needs and also try and create as many memories with him as possible. We don’t know what the future holds for him, but we know that we will face it together and that is what Super Survivors is all about.