Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website. To contact Kristin, tweet @KristinOlliney.
Isabella’s journey post acquired brain injury (ABI) has been one filled with twists, turns and bumps along the way. Having a team that stands by Isabella and I has been invaluable. I have learned that it takes a variety of people all having the same vision to help move forward in recovery. Every member of our team (both past and present) has taught me something. Trust is essential and everyone has to have the same vision. Isabella has so much fight and determination. I want a team that is willing to keep pushing her forward.
When Isabella first got sick with sudden acute encephalitis, we had a team that was given to us. We didn’t have the option to choose – it was whoever was in the PICU, relevant specialties and rehab. As we progressed forward in recovery, I started to learn about the team approach. That first year of recovery, I felt like I was being asked to settle for Isabella. She was over medicated, having difficulty walking and struggling to talk. I was told that this could be as good as it gets and that I needed to accept that. I refused to settle because I knew she could go further with the right team. I researched doctors, hospitals and therapists. I sought out second opinions, I met with rehab facilities and I talked with everyone about my vision for Isabella. I slowly was able to transition her care over to our existing team.
Our team consists of:
- 1. A medical team, including a pediatrician, neurologist and immunologist. I initially met with our neurologist for a second opinion. I was not looking for a miracle cure because let’s face it, there isn’t one. However, I knew the life Isabella had of being over medicated, seizure-filled and out of control was not the life she deserved. The neurologist was able to help get Isabella back on track by taking a more conservative approach to medication and listening to what I saw for Isabella. She was able to help me find an appropriate pediatrician, one that works with complex children like Isabella and referred me to an immunologist who has taken a proactive approach with her. These three members of Isabella’s team are key in keeping her medically stable.
- 2. A therapy team, which consists of a physical therapist, occupational therapist and speech therapist. We have had many therapists and it takes a variety of them to keep Isabella moving forward. Isabella initially woke up out of her coma unable to even lift her head never mind move her arms and legs. Isabella could only put two to three words together and she was unable to even hold a crayon. Today, Isabella runs, hops, jumps and even rides a bike. She has become a lot more verbal and puts together much longer sentences. She also gets herself dressed on most days and is great at drawing. It takes a lot of work in therapy and at home to ensure that she not only continues to gain new skills, but that she retains them as well.
- 3. Our behavioral team, which consists of a behavior consultant and behavior monitor. They were able to help me help Isabella. When they first started, Isabella couldn’t even go outside without a panic attack and she was violent. I was at the end of my rope with what to do because nothing was working. Isabella has no control over her mood, behavior, emotions, etc., so the behavioral team helped me learn all the ways to help her before she escalates. When Isabella loses control, there isn’t much I can do. However, we have put many tools in place to help us both. Mine and Isabella’s relationship is so much stronger due to the work we have all put in.
- 4. Our dog therapy team consists of an amazing woman and her little dog Charlie. They just recently moved away, but before that they came to visit every week. In those visits, there was no brain injury. Isabella was just a little girl who loved “her” Charlie. They helped Isabella learn how to be gentle, have empathy and Charlie helped Isabella through some tough times, including hospital stays.
- 5. Our educational team consists of a fantastic special education attorney who is helping me navigate the school system. I know what Isabella needs and she knows the law. Together we are working on getting Isabella transitioned to school for the fall. It was important to have an advocate who was willing to help think outside the box because Isabella is so complex. I am hopeful that together we can get Isabella the appropriate education.
In addition to these team members, we also have the many nurses who help Isabella get through hyperbaric oxygen therapy (HBOT) and child life specialists who help with infusions. Isabella gets infusions every other week because she also has an immune deficiency. Every team member plays an important role in Isabella’s recovery whether it is keeping her medically stable, moving forward in recovery, getting the appropriate education or being able to get through medical procedures. To get the team we have I had to change doctors, therapists and hospitals. Change is scary, but it is necessary to keep moving forward. I have made major changes in Isabella’s care. These changes have made the difference between her recovery moving forward and standing still.