Tag Archives: #Mommyofamiracle

Mommy of a Miracle – Tips for Successful Testing and Procedures

kristine & isabellaAs a parent to a child with a brain injury, medical testing and procedures are a well known part of life.  Whether it is an EEG, MRI, EKG, LP or something else, I have found that with Isabella planning ahead is essential.  Isabella has had an especially hard time with EEGs.  An EEG is a test that measures and records the electrical activity of your brain. She had many EEGs the first year post Acquired Brain Injury (ABI) and they were very traumatic for her.  Isabella still has the scars and bald spots from EEGs three years ago.  Isabella has had more EEGs than I care to count; I have learned how to help make them less traumatic and more successful.  The more prepared she is (and I am) the better it goes.  Below are some of the things that I did to help Isabella with her last EEG:

1.)    Social Stories are written to describe a specific situation or circumstance.  They are a page long and use familiar graphics and language.  Isabella does better when she knows the details.  The EEG social story included where we were going, what would happen and how long the “stickies” would be on for.  We reviewed it for several days prior to the appointment.  Social stories can help alleviate some anxiety.

2.)    Positive Reinforcement is acknowledging and praising the good behavior.  Whenever Isabella has an EEG I make her an “Isabella SuperStar Chart”.  This chart is something that I make on poster board (size depending on length of EEG) and it is filled with words of encouragement such as “Fantastic Work”, “Amazing”, “Great Job” etc.  It is decorated with stickers and colored all pretty.  I set the chart up so that every 2 boxes is a heart which symbolizes “Isabella’s Choice”.  That means that Isabella can choose the movie to watch or the game to be played.  Every 4 boxes is a star which symbolizes a prize.  The prizes are not anything extravagant more like crafts (which she loves), stampers, books, puzzles etc.  The day is focused on keeping Isabella occupied and happy.  Isabella loves her chart and it really helps to keep her safe.

3.)    Role Play the specific situation.  For several days before Isabella’s EEG we practice how the appointment will go.   We practice waiting for our name to be called.  Then we pretend to go into the room and sit down.  I part her hair like they would and I used a rounded crochet needle to “mark” her head (they use a red colored pencil).  After that we put the “stickies” on.   We talk about how we have to be safe when we come home with the “stickies”.  I explain that the “stickies” help us know more about her smart brain.  We talk about the “Isabella SuperStar Chart” and how much fun it will be.  I practice how the “stickies” will come off with warm water and her hair will be wiped down.  I let Isabella practice on me and I practice on her.

4.)    Ask for a Child Life Specialist.  Most hospitals have Child Life Specialists on staff.  They help distract your child while they are going through a procedure or other stress inducer.  Not all departments have them though.  The EEG department did not have Child Life.  However, I spoke with our Child Life from another department and she was able to help support Isabella in a similar manner.  Isabella knew as soon as we walked into the room that her “friend” (Child Life) had left her a surprise for when she was all done.  This helped Isabella greatly as it kept things consistent.  If a department does not have Child Life Specialist bring another person (someone your child is very familiar and comfortable with) to help distract by doing a special highly preferred activity such as watching a favorite movie, playing on an Ipad etc.

5.)    Request a specific person.  If you have a good experience with a provider, tech or nurse, ask for them.  The last person we had for Isabella’s EEG was so fantastic that we requested him again this past time.  We had to wait for him but he was worth the wait.  He had a movie player all ready to go.  He thought outside the box and that helped make it successful.

The key to these stressful appointments is to be prepared and do whatever is humanly possible to make it a success.  For Isabella, EEGs have been horrific.  However this last experience went so well that I am hopeful that the next one maybe a little less traumatic. Planning ahead is so important.  What do you do to help your loved one get through medical testing and procedures?

Guest Blogger, Kristin Olliney, is the mother of 8-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.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

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Mommy of a Miracle: My Challenge to You…

kristine & isabella

Before Isabella’s Acquired Brain Injury (ABI), I had no idea what a brain injury was.  I like many others never could have imaged the journey we were about to embark on.  I had heard about brain damage but didn’t know what it meant.  What I knew about comas came from television shows; however, I quickly found out that real life comas are completely different. Television comas are often portrayed as a person lying peacefully sleeping with a wrap on their head.  Real life comas are far from peaceful; there are machines everywhere, wires attached to every part of your body and the person is often thrashing around.  When Isabella was put on a ventilator I remember saying I didn’t understand because her lungs were fine.  I was then told that your brain controls breathing.  When Isabella woke up and couldn’t move I remember asking why because I knew she wasn’t paralyzed.  I was then told that your brain controls that too.  We were quickly thrown into this world of brain injuries with so many uncertainties.  I knew nothing about brain injuries.

Over the last three years, I have come to realize just how often brain injuries occur and how little people know about them.  March isn’t a month that has the world covered in either green or blue for brain injury awareness.  There isn’t a professional sports team adding the colors to their uniforms like they do in other months.  Unless you have personally been affected by brain injury you probably wouldn’t even know it was brain injury awareness month. “Brain Injury is the leading cause of death and disability in persons under 45 years of age, occurring more frequently than breast cancer, AIDS, multiple sclerosis, and spinal cord injury combined.”  Why is brain injury still a silent epidemic when it is causing this much death and disability?  In my opinion it is because we aren’t loud enough.  Our voices are not being heard.

The month of March should not be the only time that we in the brain injury community raise awareness.  We are all affected by the lack of research in how to effectively prevent and treat brain injuries.  We are all affected by the lack of funding to help support those who survive a brain injury.   We are all affected by the lack of appropriate services especially long term care. We are all affected by the lack of understanding that while our survivor may look fine, brain injury is an invisible disability.  We are all affected by lack of appropriate educational programs for our child survivors.  It only takes one person to make a difference.  Imagine what the world would be like if everyone knew about brain injuries.

What can you do to raise awareness?  Talk with your family, friends and others about those things that we know can prevent brain injuries such as wearing a helmet and using a seatbelt.  Educate your children not to ever drive while under the influence of drugs or alcohol and to not text while driving.  Discuss resources that are available to parents and other child care providers to prevent a baby from being shaken.  Remind others to always have a buddy with when swimming.  Get others involved in looking out for the signs of a concussion or a stroke.  While not all brain injuries are preventable knowing how to best keep yourself and others safe can decrease your risks.

I challenge each one of you to not only raise awareness for the month of March but to raise awareness every day.  We are the voice of our brain injury survivors and the survivors to come.  It only takes one person to make a difference.  Let that difference start with you.

Are you up for the challenge?

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.

Lessons learned from Isabella

kristine & isabella
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. 

Sunday, February 23rd was Isabella’s 8th birthday.   Recently it occurred to me that when Isabella turned 8, she will have had a brain injury almost half of her life.  Another year older, we are still fighting to relearn everything and regain a sense of “normalcy”.  Let’s be honest. Brain injuries suck.  They rob you and your child of the simple joys in life like birthdays.  Isabella had been waiting for her birthday for a month.  We had the day planned for the three of us: her, myself and my fiancée.  We planned on presents, cake, decorations, piñata and her favorite meals.  What I didn’t take into account is that no matter how much you plan, brain injuries are unpredictable.  The after effects of a brain injury are long lasting and do not discriminate or care that something like a birthday is suppose to be happy.  Don’t get me wrong we had some great moments but as the day progressed things quickly went downhill.  It was heartbreaking to watch Isabella literally fall apart because something like a birthday was too overwhelming and too much.  She kicked, screamed, cried, hit and went hysterical until she would finally let me hold her.  My heart aches for Isabella.  I am choosing to hold on to the good moments that we had on her birthday and reflect on all that Isabella has taught me.

When Isabella was born I had no idea that this little person would become the bravest, strongest, most amazing human being that I would ever meet.  I had no idea that she would endure more in her short life then most in their entire lifetime.  You see Isabella’s brain injury has robbed her of many things in life, things that will never be ok ever again.  What Isabella’s brain injury didn’t rob was that will to fight, her unrelenting determination, her strength, her endurance, and the ability to change and amaze those around her.

Isabella has taught me heroes come in all shapes, sizes, genders and ages.  Isabella is my hero.  She has spent the last 3 + years fighting to regain her life and learn everything all over again.  Isabella lives in a scary world filled with anxiety, hallucinations, inability to express herself, loss of control over her body and mind.  Yet she tries so hard every single day.  To live in a world like Isabella’s and still have good moments that is bravery.  That is strength and endurance.

Isabella has given me the opportunity to appreciate the small things that we often take for granted.  We stop and smell the flowers.  She and I watch the sunset knowing Nana in heaven is making it beautiful for us.  We take the time to laugh, hug and just enjoy each other.  Isabella has slowed me down and made me see things that for years I never even noticed.  Life takes on a greater appreciation that most will never know unless faced with the same uncertainty of possibly losing it all.

I was already a determined person, seeing Isabella’s determination only makes me fight that much harder for her.  Isabella spent a day learning to sit up only to fall back over and then do it again.  I have watched her attempt to kick a soccer ball to lose her balance and fall.  Yet Isabella did it over and over again until she was able to kick the ball.  I have watched Isabella struggle to find the right words to read a sentence in a book.  Sometimes it takes 3 or 4 tries to get her brain to say the right word but she sticks with it until she reads the sentence correctly.  Isabella knows what she wants to say and she is determined to figure it out.  That determination is inspiring.

My wish for Isabella in her 8th year is that she will start seeing how truly amazing and awe inspiring she is.  I want Isabella to know that it is ok to be scared; doing it anyway makes you brave.  I want her to know that strength isn’t only measured with how physically strong you are but also by the things in life that are suppose to stop you and yet you overcome.  I want Isabella to know how very proud of her I am.  I love Isabella more with each day; her brain injury makes me love her even more.

Brain injuries suck.  They are gut wrenching to watch.  As a parent it can be devastating to see your child struggle everyday with things that once were easy and done without second thought.  I encourage you to find the lessons that survivors offer to everyone they know.  Cherish the moments and recognize that in an instant it can all change.

“Most people never get to meet their hero. I was lucky enough to give birth to mine.”

Mommy of a Miracle: Why the shame?

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

Brain injury is known to increase the risk of some psychiatric disorders including but not limited to anxiety disorders, personality disorders, depression, substance abuse disorders, self injurious behaviors, obsessive compulsive disorders (OCD), rage, aggression, post traumatic stress disorder (PTSD) and the list goes on and on.  Both survivors and parents of children with brain injuries find themselves suffering from these psychiatric disorders as a result of brain injury.  These conditions and disorders are often hidden from others because nobody wants to look “crazy”.  Our society has taught us that having these disorders is bad.  We are often told to be strong or grateful for surviving.  Then we are shamed into feel like something is wrong with us for admitting that we need help.

As a result of Isabella’s Acquired Brain Injury (ABI), she now has severe anxiety.  The separation anxiety, social anxiety and general anxiety is debilitating not to mention completely heartbreaking.  Isabella wakes up every single morning screaming from a panic attack.  This is how our day starts.  Isabella doesn’t like to leave the house because there are “bad things out there” and she feels safer at home.  When we are home, the routine is familiar, the expectations are the same and it is pretty predictable but when you leave home there is a lot that can’t be structured or predicted.  If other people look at Isabella while we are out at an appointment, she immediately tries to hide in her stroller and she starts to panic.  Unfortunately, anxiety for both a brain injury survivor and the parent of that child is all too common.

Isabella suffers from auditory hallucinations and on occasion visual hallucinations.  Isabella has these constant “sounds” that she hears.    About a month post ABI, I found Isabella under our kitchen table rocking back and forth, shaking and screaming while covering her ears.  It was like right out of a horror movie.  Over time, she was able to verbalize what she was experiencing.  The “sounds” that Isabella experiences are similar to static, stomping, banging and often sound like Charlie Brown’s teacher (talking that you can’t understand).  They scare her.  Isabella hates to be alone because of the “sounds”.  The “sounds” are constantly there and at their worst when she is tired, sick, in the car, post seizure and at night.  During the day, I try to keep her distracted and we have set up noise machines to help drown the “sounds” out.

Isabella has no regulation of her mood, behavior or emotions.  When Isabella feels something (happy, mad, sad etc) she feels it very strongly.  Isabella can escalate to rage and aggression within a second.  It is like a switch goes off and everything changes.  Isabella has been said to appear to have the worst case of ADHD that most people have ever seen.   These symptoms are all too common for survivors of brain injury.   We have trialed many medications to try and help Isabella.  Unfortunately, medication has been unsuccessful.  Some medications cause Isabella to have a paradoxical reaction which means instead of helping her slow down it makes her race worse than she was before.  Some meds cause her breathing and heart rate to drop where she appears to be lifeless.  Other medications have no positive effect.  When you have a brain injury, medications react different than they would in a neurologically typical brain.  Isabella receives in home behavioral to help her learn coping and adapting skills.  While Isabella knows what she is suppose to do, applying the skills is where she can’t seem to connect.

Isabella has extremely low self esteem.  She can’t get her brain and body to work together.  As a result she feels stupid, dumb and sad.  Isabella tries so hard every single second of every single day.  It is heartbreaking to watch her continue to try and not succeed.   Isabella knows that before her ABI, things came much easier.  Now everything is a lot harder and as a result she feels negatively towards herself.   I use a lot of positive reinforcement with Isabella.  I ask others that work with her to use it as well.

When we hear of PTSD, we often think of members of the military.  However, PTSD is not limited to the military.  Some of the symptoms of PTSD include nightmares, flashbacks, difficulty eating or sleeping, etc.  Many brain injury survivors live with PTSD every day.  Many parents of children with a brain injury also suffer from PTSD.  When you see your child dying before your eyes, it changes you.  It changes your entire world and everything that you thought you knew.

Isabella, like many other survivors of brain injury suffers from psychiatric disorders as a result of a brain injury.  Parents of children with brain injuries can also suffer from psychiatric disorders because they have witnessed the unimaginable.  Often times people go without treatment because of the shame that often accompanies these disorders.  Brain injuries change not only the survivor’s life but also those directly involved.  It is ok to feel how you do.  It is ok to get the help that you need.  Let’s end the shame that is involved with these disorders.

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.