Tag Archives: sudden acute encephalitis

Mommy of a Miracle: “You are not Alone”

Kristin Olliney

Kristin Olliney

Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor. 

“To the memory of Giovanni (Gio) Cipriano”

When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries.  Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents.  I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury.  I needed that connection with other parents who could relate to having a child with a brain injury.  Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next.  At one point we all had a neurologically typical child, some of us longer than others.

I wanted to find an online support group.  I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home.  In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting.  I wanted a safe, non-judgmental place to go to at any given moment.  Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc.  While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.

When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.”   I had hoped to have at least a few parents join.  One-by-one as parents joined, I realized that I was no longer alone and neither were they.  We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury.  We all belong to that “club” that we never asked for or imagined we would belong to.  That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.”  Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred.  We are all at different places on this journey.  Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time.  “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.

Having a child with a brain injury has changed us all.  Our children are now faced with a very different life as are we.  Some of our survivors are being bullied because of those differences.  We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside.  We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury.  We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends.  We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies.  We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.

Two weeks ago, we had our first loss.  A new member joined and she had a child struggling to survive a brain injury.  Unfortunately that child did not make it.  Words cannot express the sadness that was felt.  I have never met this mother nor her child, and yet my heart ached just the same.  After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive.  The reality is that every five minutes someone dies from a brain injury.  That someone has a parent somewhere.

What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver.  I may never meet these amazing parents but I can’t imagine my life without them.  This group and our members have had such a profound impact on me.  I can’t express how much these parents have changed my life.  If you haven’t found a brain injury support group, I highly recommend it.  When you find the right one, you might wonder how you ever survived without them.

To locate a support group in Massachusetts, visit http://www.biama.org/groups.html and click on BIA-MA Support Group Listing. Or, click here.

Mommy of a Miracle: Second Chance

Kristin Olliney and her miracle, Isabella, making new milestones every single day.

Kristin Olliney and her miracle, Isabella, making new milestones every single day.

Today’s blog post is part of a bi-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 her greatest fears and joys of what she calls hers and Isabella’s “Second Chance.” To contact Kristin, tweet @KristinOlliney.

The day that Isabella came down with sudden acute encephalitis became the defining moment when our lives were forever altered. Prior to that day, I spent my entire life going through the motions and living as best I knew how.  Since Isabella’s ABI (Acquired Brain Injury), life is defined as “before she got sick” and “since she got sick.”  That one moment changed everything about us.   My world as I knew it came crashing down and I came so close to losing it all—Isabella is my life.  It is a miracle that she survived.  This second chance we were given gave me a new appreciation of life—one that most don’t understand unless they have been through something similar.

When Isabella was born, she didn’t cry like most babies.  Isabella wasn’t breathing and she was quickly whisked out of the room before I got to hold her.  Isabella was put under an oxygen hood and I didn’t get to meet her until the next day.  I had toxemia and I couldn’t get in the wheelchair to go down to see her.  I just physically couldn’t get up.  To this day I still beat myself up about it.  I think I should have tried harder or I should have done something different.  Parental guilt (“did I do enough, I should have done more”) started right from the beginning.  As my baby became a toddler and then a “big girl” she met all of her milestones.  Isabella often met them early.  Hitting milestones for the first time was exciting but also expected.  The first smile, the belly laugh, hearing “Momma,” sitting, standing, walking and eventually writing her name, starting school, playing soccer, riding a bike, etc., were all great moments.  I enjoyed the moments the way most mothers do.

As Isabella lay in a coma, fighting to survive, I thought about our life.  I wondered if she knew how much I loved her—did I tell her enough? Did I kiss and hug her enough?  Did I make her happy in life?  I couldn’t even allow myself to accept that Isabella wasn’t supposed to make it.  I couldn’t wrap my head around walking out of the hospital without her.  After several days in a coma Isabella started to breathe over the vent.  We decided that it was time to take Isabella off of the vent and see if she could breathe on her own.  As the vent was pulled out I heard Isabella’s little voice crying out, “Mommy, Mommy, Mommy,” and it was like she was born again.

Isabella was still in a coma but she was able to cry out for me.  I cried tears of joy.  I was able to lay in bed with Isabella and hold her.  I knew from that moment forward that this was a new beginning for us both.  I vowed to never take a single second for granted and to truly appreciate our lives.  When Isabella finally awoke from her coma she was in the state of a newborn, except a newborn could move his or her arms and legs and Isabella couldn’t.  Her fight and determination are like I have never seen before.  In those first days out of the coma, Isabella would lay in my arms trying to gain neck control so she could hold her head up.  When Isabella mastered that, she wanted to sit up in bed.  Every time Isabella tried to sit up she would fall over.  Isabella spent the entire day pushing herself up only to fall back down.  Her determination was such that, by the end of the day, she was sitting up.

Since Isabella’s ABI, she has hit so many milestones again.  She’s learned to stand, walk, run, kick a ball, throw a ball, ride a bike, talk in sentences, write her name, draw, etc.  This time around, milestones have been accomplished through hard work, determination, tears, sweat and a fight to keep on going.  When your child isn’t supposed to make it through the night and yet defies the odds, every milestone is an emotional moment—a happy victory on this journey to recovery.

Knowing firsthand how fragile and uncertain life is can be a blessing and a curse.  It is a blessing because I learned to appreciate the small moments in life that most people don’t know they are even missing out on.  I hug Isabella just a little bit tighter.  I make sure I tell Isabella how amazing she is and how much I love her.  Knowing what I do about the uncertainty in life is also a curse because I learned the hard way that in an instant it can all change and be over.  This knowledge can lead to guilt and fear that I didn’t do enough.  There are days where I wish I did more, played more, cuddled more and enjoyed every moment just a little more.  I try to remind myself that I am human and I can’t be perfect.  I have been given the biggest blessing of all: a second chance.  There will always be days when I wish I could do more.  I thank God every night that I was given another day with Isabella.  Before I close my eyes I pray that I will be blessed with another day tomorrow.

“We can only appreciate the miracle of a sunrise if we have waited in the darkness.”  ~Unknown

Mommy of a Miracle: It takes a team to recover

kristin

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. 042

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. 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. 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. 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. 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. 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.

Mommy of a Miracle: How Family Life Changes After Brain Injury

kristinToday’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 their family life has changed since Isabella’s brain injury. Read Isabella’s entire story on our website.

When Isabella suffered a brain injury, every aspect of our family life suddenly changed. While life is not perfect or the way I had planned, it still is great. Often, people do not understand why things are different because on the outside Isabella looks “fine.” Isabella’s ABI (acquired brain injury) is an invisible disability. Below are some of the ways that our family life has changed.

1.       Our day-to-day life is different:  As summer approaches, I think of how we spent our days prior to Isabella’s ABI.  We were either at the beach, swimming in the pool, going to cookouts and parties, taking day trips, going to the zoo or hiking. Prior to Isabella’s ABI, she was a lot more independent.  Since her ABI, our summer days are spent at speech therapy, occupational therapy, physical therapy, aquatics therapy, in-home behavioral therapy, hyperbaric oxygen treatment, infusions, meetings and doctors appointments. Isabella also requires help with daily tasks, such as getting dressed, brushing teeth, using the bathroom, etc. Our downtime has to be carefully planned out and revolves around Isabella and where she is mentally at any given moment. I have to consider her level of anxiety, aggression, mood, fatigue, etc when trying to plan an outing or activity.

2.       Others perceive us differently: Isabella looks like a typical seven-year-old child. She has an ABI, which is an invisible disability. Isabella is a completely different child than she was before her brain injury. She struggles on every level behaviorally, emotionally, psychiatrically, cognitively, verbally, etc. While others may be in denial that anything is wrong, I have come to terms with the fact that Isabella will never be who she once was. Accepting this early on has helped me tremendously. While Isabella was robbed of the life she was supposed to have, she is working really hard. Her future will be different, but she has a future I believe will still be bright – it just won’t be how I may have imagined it.

Kristin and her daughter Isabella participate in BIA-MA's #BrainInjuryAffects Campaign.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

3.       Isabella’s behavior can be unpredictable: Isabella gets out of control.  She can drop to the ground, kick, scream, hit and have a full out tantrum. Other times Isabella says and does the most inappropriate things. Isabella’s brain injury causes her do things that she can’t control. Having someone laugh, point, yell at either of us or add rude commentary does not help the situation. Isabella doesn’t need to be physically disciplined or ridiculed.  She needs support, understanding and positive reinforcement.  As a Mommy, I am doing everything that I can to help her and when we are judged, it makes us feel worse.

4.       Isolation occurs: As we continue on this journey, I have realized that everyone else’s lives are moving on and in many ways ours are not. Most of our family and friends have stopped inviting us to parties or events.  At first I was relieved because I didn’t have to explain why we couldn’t be there. It hurts when the invitations stop because it feels like family and friends have forgotten about us. It’s hard to hear about graduations, birthday parties, holidays and other get-togethers. While Isabella may not ready for those types of situations, there will be a day when she will. I am so thankful for those few people in our life that continue to invite us in hopes that one day soon things will change.

At the end of the day, do I wish things could be different for Isabella and our family? Yes, of course I do. I wish nobody had to suffer from a brain injury. That being said, the reality is a brain injury is not going to magically disappear. I am helping us embrace the life we now have and to make the best of what we have – it’s all in how you look at it. I am thankful for every moment and day I have with Isabella. The outcome could have been so much worse.  Brain injury changes every aspect of your family. It doesn’t mean your life is over, it means that you need to accept that a new life is about to begin.

Mommy of a Miracle: Caregiver, Parent and Me

kristin

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 challenges of balancing being a caregiver, mother and finding time for herself. Read Isabella’s entire story on our website.

As a parent to any child, we have many job titles: chauffeur, cook, maid, etc. When you have a child with a brain injury, you add therapist, advocate, teacher, nurse, caregiver, etc. to the list. The added pressure can be extremely overwhelming and it is easy to lose yourself in the process.

When Isabella’s acquired brain injury (ABI) occurred, I was so caught up in all of her needs that I forgot that I mattered too.  Every day was spent at therapies, doctor’s appointments, and meetings, having phone calls, researching and working on her treatment. I put everything I had into making sure that she got all that she needed. I completely put my life and needs on hold.

After the first year, I was a mess. Call it caregiver burnout, fatigue or just exhaustion, but I knew that things had to change. Isabella has a brain injury and if I am not on top of my game, I can’t help her. I hadn’t expected to be in a similar place a year later. I needed to find a balance.  I needed to still be me, Kristin, while also being a mommy and a caregiver. 042

We had missed out on so much since her ABI.  Isabella wasn’t in a place that she could visit with family, go outside, go to the store or do all the things we all take for granted. So in seeking balance for myself, I started to help both of us. I spent the first year being so happy that Isabella was here and alive that I sacrificed everything for her. If I had to do it over I would do it exactly the same way. After that first year though I needed to find balance for my own sanity and to help Isabella move forward in her recovery.

Find the balance by:

1.)  Getting organized. I have a medication chart so I can accurately keep track of what has been given and when. I have organized all the paperwork that goes along with being a caregiver and parent. A binder of all things related to school and IEP. A binder of all medical information, insurance paperwork, therapy notes, etc. When I need to pull paperwork for an appointment or meeting, it takes minutes rather than hours.

2.)  Set goals for the year, including ones for yourself and for your child.  The purpose of our goals is to start getting back to our lives and having a sense of some normalcy. Goals can be big or small, but make them achievable. Some of the goals we had last year were: being able to go successfully into a store, going outside for 30 minutes with minimal issues, getting Isabella into her own bed and eventually her own room.

3.) Finding a support group. If you are unable to attend one in person, find one online. Social networks have many different kinds of support groups. I have found these to be the right fit for me. I can talk about what I want, when I want from the comfort of my home and on my time.  Having other parents who are in similar situations has been so important to me.  I started an online support group for parents of children with brain injuries. I needed support from others who could relate to my life and were in similar situations.

4.) Find something that you are passionate about and do it. Brain injury has become that passion for me. I have learned so much along this journey. My goal is to be able to spread brain injury awareness through public speaking and advocacy. In the meantime, I am an active participant in a few support groups, sharing my experiences through this blog and working on a case study for hyperbaric oxygen treatment. Whatever your passion may be, find time for it.

5.) Be as social as you can. Isolation is something that we all find ourselves dealing with. Initially we isolate ourselves because we are completely caught up in being the caregiver during a crisis. As time goes on your relationships with friends and family change because we lose the common ground or our child is no longer in the same place to tolerate what they once could. I have always been a very social person. I am not a homebody. I crave being out and about. Isabella isn’t in a place to resume our previous life of constant socialization and be actively out and about. As a result, I have had to find the balance. I miss my family and friends terribly. While Isabella isn’t able to tolerate those situations, I can still enjoy them when she is in bed asleep. I have made nighttime my “me time” by talking on the phone, having visits from friends and family while my daughter sleeps or just enjoying the quiet. It has become incredibly important to me.

6.) Take everything one day at a time. Isabella and I are not victims. We are survivors. What happened to her was tragic, but our lives will not be a tragedy. I can’t go back and change it.  This is our everyday reality.  We take one day at a time. I have a sense of appreciation for life that I never knew was possible. Really, you can’t appreciate it until you are looking at the reality of losing it all. I have learned to enjoy the small things in life. I also allow myself to have my moments. We are parents and caregivers, but we are also human. I have to remind myself of that often. Allow yourself the time to grieve for what was lost. My daughter was robbed of her life. She will never have the life she should have. She will, however, have a life and my goal is for her to be a self-sufficient adult someday.

7.) Don’t lose sight of being a parent. When you become a caregiver, it is easy to lose sight of being a parent also. Isabella and I have made weekends our “vacation.” On the weekends we are Isabella and Mommy. There are no phone calls, meetings, e-mails, research, etc. Those weekends have helped her and I so much.

Parenting, caregiving and your sense of yourself can easily be lost when your child suffers a brain injury. It is a difficult balance, but that balance can be achieved. I have learned that being a mommy to a child with a brain injury is the hardest and yet most rewarding job I have ever had. The pay is priceless as it comes in the form of small successes, pride on their faces and the sense of knowing you fought hard to help them achieve their goals. I am so glad that Isabella picked me to be her mommy.

Mommy of a Miracle: Parenting a Child With a Brain Injury

kristinToday’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 challenges of parenting a child with a brain injury. Read Isabella’s entire story on our website.

Parenting a child with a brain injury is completely different than parenting a child without a brain injury. Isabella is totally different since she suffered an acquired brain injury (ABI). Her brain has changed, so I had to change my parenting as well. Prior to Isabella’s ABI, she was your typical four-and-a-half year old child. I do not remember her ever being angry – she was a very happy child who had an infectious laugh.042

Since Isabella’s ABI, I have found that in-home behavioral (ABA – Applied Behavior Analysis) is making an enormous difference in our lives. We have had a behavioral team for over one-and-a-half years. I have been receiving ongoing parent training during that time.

Parent training has included identifying triggers, positive reinforcements, de-escalation strategies, effective instruction delivery, coping strategies, implementing rules and many other behavioral aspects. We have a behaviorist who works with me on training and program development. The behaviorist writes the programs that are taught to Isabella. The behavior monitor works directly with Isabella on the programming. Some of the programs we are working on are coping skills, identifying emotions and how she feels, average daily living skills, social skills and alternatives to destructive behavior. As Isabella masters a skill, another one is added. Progress is slow but it works. It requires consistency, patience, predictability, follow through and commitment. This is our life and I am willing to do whatever is necessary to help my daughter. These are some of the things that I have learned:

  1. Focus on safety at home. Our home is adapted to meet Isabella’s needs. This means placing any unnecessary items away to make it less stimulating and less overwhelming. Each room is childproof. For us this meant magnetic locks on the cabinets, sharp objects placed up high, glass items removed, outlets covered, additional locks on doors, closets locked, gates up, etc.  Isabella’s bedroom is a “safe” room where I can place her for time out.  It has a custom half door, furniture bolted to the wall, mattress on the floor and windows covered. When Isabella is raging, this is where she goes so I can safely maintain her.
  2. Pick and choose your battles. Allow choices whenever possible. Medication, bedtime, therapy and showering are all not negotiable. However, choices for meal and clothing are always presented. Relinquish control where appropriate and it can make a big difference.
  3. Schedules and routines are so important. This helps with transitions and allows for predictability. Mealtimes, showering, medication and bedtimes are all followed strictly.
  4. Find a support network. Family and friends are the natural supports. I have found having brain injury survivors, parents of children with brain injuries and parents of those with special needs to be the most accepting and understanding. Those are the people who can most relate to my everyday life.
  5. There is help out there, but you have to ask for it. I was ashamed, embarrassed, sad, scared and a ton of other emotions with how bad things had gotten. Isabella would rage for hours. For example, she’d throw chairs, bite, kick, hit, spit, go to the bathroom where she shouldn’t, flip furniture, destroy property, etc. Asking for help didn’t make me a bad parent. It made me a better parent and allowed me to give my daughter what she needed to be successful.

Right now, Isabella is going through a very challenging time for various reasons. What helps is having a home that is adapted to meet her needs, behavioral strategies in place, a support network and behavior team that is committed to Isabella. Parenting Isabella produces a lot of emotions for me. There are days where my heart breaks for her. I see her trying so hard to not be impulsive, to use her words, be safe and she just isn’t able to. Seeing her try so hard and not be successful is so sad. There are days where the aggression is nonstop. On those days I remind myself that this isn’t her fault or mine. This is her brain. On those days, I take a minute to just take deep breaths. There are some days when I see Isabella successfully using the skills she has been taught and those are the most rewarding times.

No matter how good or bad the day, when Isabella was in the hospital dying before my eyes, I prayed to God (or whoever was listening) to save my baby at all costs. No matter what the consequences were of that decision. Isabella was saved. I stand by that every moment of every day.

What part of parenting a child with a brain injury is the hardest for you?

Mommy of A Miracle: Advocating for Your Loved One


kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by Kristin Olliney, our newest guest blogger and 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 discusses the importance of advocating for the survivor in your life. Read Isabella’s entire story on our website.

As a mother and sole caregiver to my daughter Isabella, I am also her biggest advocate. I am Isabella’s voice. Isabella’s journey has been a series of highs and lows. She and I are a team – I refuse to be a bystander. Isabella’s ongoing strength, courage and determination make me fight even harder for her.

Kristin and her daughter Isabella participate in BIA-MA's #BrainInjuryAffects Campaign.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

This past summer, Isabella had really regressed (behaviorally, emotionally, psychiatrically, and cognitively). It was heart wrenching to watch. I turned to the Internet on a mission to find something that could help Isabella. She already had physical, occupational, speech, in-home behavioral and dog therapy, as well as many other providers involved. I was looking for something else to help her get back on track.

I came across an article about hyperbaric oxygen treatments (HBOT). HBOT is a medical treatment that puts the entire body under increased atmospheric pressure. The patient breathes 100 percent oxygen as opposed to the 20 percent we normally breathe. The higher amount of oxygen promotes blood oxygen flow to damaged tissue, reduces swelling and infection, preserves tissue and increases the healing of wounds. This form of treatment is commonly used to treat diabetics with wounds that aren’t healing, burn victims, cancer patients with damage from radiation treatment, etc.  Recently, HBOT had been used to treat veterans with Traumatic Brain Injury. The results of the TBI study showed so much promise that I continued to research.

I couldn’t find any HBOT studies that involved children or anyone with an Acquired Brain Injury.  I couldn’t stop thinking about the promise these studies had shown, so I talked with Isabella’s neurologist.  We decided to try HBOT.  I was thrilled at the possibilities that this treatment could offer, but I had realistic expectations. My hope was that if it helped with just one symptom then it was worth it.

On the day of the first treatment, Isabella and I went into the chamber with a nurse. Once the chamber reached the correct pressure, Isabella put on a hood and breathed in the higher oxygen for an hour. During treatment Isabella could play, talk, move around and even watch a movie. She tolerated HBOT very well with no adverse reactions.  We went four times per week, an hour each time. Based on the few TBI case studies that were available, we decided to stop when we reached 40 treatments. There is no protocol for children or even adults with ABI.

The treatments helped Isabella in many ways. She started sleeping through the night which was something she hadn’t done before, and started showing sporadic compassion and empathy.  Music (which had been a trigger since the brain injury) was now something Isabella not only tolerated but enjoyed. As we approached 40 treatments, she had her biggest breakthrough. She started remembering things about her life before. The memories were random and not something that we would ever talk about (i.e.: playing video games with my cousins on the day she got sick with acute encephalitis). The brain injury had severely impaired Isabella’s memory. She didn’t remember anything about the first four-and-a-half years of her life. The two years since the brain injury had become a blur. I immediately started advocating for more HBOT. We decided to continue with another 40 treatments as long as Isabella continued to improve, which she did.

When we reached 80 treatments, we decided to take a break to see how she did.  After two weeks without HBOT, things were awful.  Isabella was no longer sleeping through the night. She was waking up multiple times and was awake way too early. Her tics were worse and anxiety was increased. She was having trouble talking, her OCD was at its worst and she literally couldn’t sit still. Isabella would complain that she couldn’t make her “brain stop.”  It was heartbreaking to watch.

HBOT had helped Isabella, but I had no idea how much until I was watching her slowly fall apart without it.  I advocated for her to get back into treatment so she could be maintained (one to two times per week).  Unfortunately, the insurance company didn’t feel the same way. I am appealing this decision.  HBOT is not a treatment that she can have for life.  However, there has to be a way to maintain Isabella. My hope is that someday HBOT will be available to all brain injury survivors.

Isabella’s brain injury requires a combination of many therapies, treatments, medication and a great team of medical professionals. It also requires that I be an active participant in Isabella’s care by advocating. I research, ask questions, talk with other families and won’t ever give up advocating for her. Advocating is an uphill battle but seeing improvements that I helped to accomplish makes it completely worthwhile. Whether you want the brain injury survivor in your life to have access to HBOT, another treatment you’ve researched, or new kind of medication, advocating for your loved one is absolutely one of the best things you can do for your loved one.