Tag Archives: acquired brain injury

Hope – Mommy of a Miracle

Since Isabella’s Acquired Brain Injury (ABI), I have found hope to be crucial on this journey.  Hope that against all odds it would somehow work out.  Hope that things would turn around.  Hope that I was doing the right thing.  Hope that this medication or therapy or doctor etc.  would be just what is needed to move forward.  Without hope what is there left?  I always try to encourage others to sustain realistic hope.  As I watched Isabella continuing to regress and decline, I started to lose hope that we could turn this around.  Although every time I looked at Isabella I knew I had to continue fighting on.  She hadn’t given up hope so neither would I.

As I embarked on a path to raise twenty two thousand dollars for Isabella to have her own Hyperbaric Oxygen chamber at home I found the hope start to build.  I heard the doubt in others voices and I knew it was a lot of money, but I knew that we would raise the money somehow some way.  My husband and I reached out to anyone and everyone asking for their help.  We had our family, friends, my amazing support group and complete strangers helping us figure out a way to make it happen. The outpouring of love and support was incredible.  I spent my nights researching ways to raise money knowing full well that any fundraiser that was set I couldn’t physically be there.  I continued on because I knew HBOT provided hope that we could turn this around for Isabella.  I had hope that we could do this for her.

As the end of September approached, so did the fifth anniversary of my Nana’s death.  I truly believe she is always watching out for us.  That week things started to come together.  That hope that I had struggled to find again was starting to rebuild.  It is often said that it only takes one person to make a difference but I truly believe it is a lot of people doing what they can together.

With each person or company I reached out to it led us one step closer.  As Isabella’s story was shared, I received the most amazing email on the anniversary of my Nana’s death.  Guardian Angel Motorsports heard about Isabella.  After speaking with the founder, they agreed to donate the rest of the money needed to get Isabella her HBOT chamber.  It has been a few days and yet I am still in shock that this has really happened.  Isabella’s HBOT chamber has been ordered and it is in transit to us. I truly believe that my Nana placed this Earth Angel in our path because she saw that I kept pushing through knowing that for Isabella I would do anything.  My hope may have wavered but it was never truly lost.  What I want others to know is that when things seem impossible and the odds seemed stacked against you, remember to keep pushing forward.  “Once you choose hope, anything’s possible” – Christopher Reeves

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.


First Day of Second Grade – Mommy of a Miracle

One of the hardest decisions on Isabella’s journey has been the decision to homeschool her.  It was honestly something that I never even thought of or considered until her medical team recommended it last year. The decision to homeschool was one of the hardest I have ever made. I knew it was the right choice for Isabella.  When it comes to her I will do anything to help.

Last year, once Isabella realized that we were going to do “work” at home she excelled.  Isabella loves to learn and that smile just lights up the room.  As Isabella’s regression set in, the one thing that she was consistent in was her “work”.   I was so happy that Isabella continued to thrive academically.  When the Hyperbaric Oxygen Treatment (HBOT) stopped, Isabella quickly went from regressing to a downward spiral.  It was heartbreaking to watch Isabella lose skills that she had mastered and worked so hard to achieve.  It frustrated Isabella because she knew that she had already learned certain things and yet she was unable to remember.  As this past summer approached, Isabella and I worked every day to maintain what skills she still had in hopes of preventing further loss.  No matter how hard and challenging it was for Isabella, she was always excited to do her “work”.

As August approached, Isabella and I started talking about second grade “work”.  Isabella would ask with excitement about all the new things she would learn.  On Labor Day weekend we redid our “work” area in preparation for the “First Day of Second Grade”.   As I watched the excitement and joy in Isabella’s eyes, I thought this is how school is supposed to be for a second grader.  It is not supposed to be like last year- filled with terror, crying, screaming and aggression.  I always knew that I made the right decision but seeing that excitement in Isabella for second grade solidified my choice.

The “First Day of Second Grade” finally arrived.  Isabella was ready to do her “work” the moment her eyes opened.  I can’t express enough, how even though Isabella continues to regress in so many areas, it is a true blessing to see that her love for learning is still there. It continues to be our silver lining.  As we embark on another year of learning, I am excited to see how far Isabella will go.

Homeschooling was one of the hardest decisions on this journey and yet it has now become one of the best decisions.  In true Isabella fashion, she does things her way.  Isabella does not follow the path of everyone else, she is unique and likes to make her own path.  For that I am forever grateful.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

Grieving – Mommy of a Miracle

As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell.  The truth is we grieve and most people on the outside just don’t get it because after all our child is still here.  This is my attempt to explain something that is hard to “get” unless you live it.

When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins.  Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance.  When your child suffers a brain injury most  times you have a child who looks like they did before but they are an altogether different child.  Almost like a stranger was placed in their physical body.  We not only go through the grief cycle but are often times left with what has been called chronic sorrow.  Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.

Shock and denial is the first step of grieving.  According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled.  When that brain injury happens to your child, shock sets in fast.  I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast?  I was physically going through the motions but I was in complete shock.  There are chunks of time that I just don’t remember.  Denial is something that I never experienced and for that I am eternally grateful.  I think the fact that I was a single parent helped me a lot.  I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.

Anger is the second step of grieving. For me anger is such a foreign emotion.  I am not an angry person.  I can only remember two times in my life where I was angry.  Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to.  I was angry that my child was robbed of the life she was supposed to have.  Isabella was a 4.5 year old little girl who had the world waiting for her.  She was this happy-go-lucky, social, smart little girl who met friends everywhere we went.  She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember.  Yet my baby girl was hooked up to machines galore and fighting for her life.  I was angry and I have my moments were I still am.  It is ok to have those moments as long as you are able to move forward.

Sadness is the third step of grieving.  It is when the reality of your child having a brain injury actually starts to set in.  I was sad that the child I had for 4.5 years was gone.  Isabella looked exactly the same yet was replaced by what seemed to be a stranger.  I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc.  I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc.  Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the  frustration she felt because she knew she could once do it.  I was sad and I still have my moments were I am very sad.  I allow myself those moments because I am human and I know that I will keep moving forward.

Bargaining is the fourth step of grieving.  It is when you try to find the reason or explanation as to why.  It is asking “what if”, “should’ve, could’ve, would’ve” etc.  Often times bargaining is people thinking that they are paying for past mistakes.  I am fortunate that this is not something I went through.  Quite frankly I believe that sometimes bad things just happen.  There is not a rhyme or reason, it just is what it is.  I knew that I did everything that I possibly could to save my child.

Acceptance is the final step of grieving.  It occurs when you have come to the realization that what was is no longer and you start your new normal.  Acceptance doesn’t mean that what happened is ok.  It quite simply means that you are living in reality and have an understanding that life is different.  I will never be ok with what happened to Isabella.  She was robbed of her life.  I have come to the realization that the path Isabella was on prior to her ABI will not be.  However that doesn’t mean that Isabella can’t have a life.  Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability.  Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.

Chronic sorrow is how best to explain life with a child who has a brain injury.  You are repeatedly faced with a child who in most cases looks exactly like their old self.  However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world.  When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it.  What I have found is that I love my new Isabella more than I ever loved the prior one.  It is hard to imagine that possible.  The Isabella I have now has become my hero.  I admire her courage to face each day no matter how difficult it maybe.  I admire her determination and I hope she never loses that fight.

“The only people who think there’s a time limit for grief, have never lost a piece of their heart.  Take all the time you need.”  unknown

*taken from www.chronicsorrow.org

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

Think A-Head Redesigned and Revamped, Coming to a School Near You

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Students get ready for prom. Do they know the dangers of drinking or drugging and driving?

Did you know that the brain contains 100,000 miles worth of blood vessels–enough to circle the earth four times?  The brain contains 100 billion neurons, which are cells, known as gray matter, that process all of the information in your brain. Each neuron is connected to other neurons by up to 40,000 synapses. This means that the number of connections in the brain outnumbers the number of stars in the universe.

Did you know that the brain is made up of 75% water, and uses 20% of the oxygen in your body at any given time?

What a powerful organ…one worthy of protecting, since it houses so much information and capability.  However, brain injuries are the leading cause of death and disability in young adults and teenagers. The recorded instance of concussion, car crashes and substance use by this group is increasing. So, what can be done to enlighten students and give them knowledge, allowing them to make better choices for their own safety?

The Brain Injury Association of Massachusetts has a solution. Think A-Head is a dynamic, school-based program that has been teaching students to avoid risk-taking behavior and develop healthy living habits for nearly 20 years. This curriculum is tailored to the age of the students and to the specific needs of the school and its community. The program offers a core curriculum with amendable activities based around the following issues:

  • Brain Injury: General knowledge of the brain, brain injury, high-risk groups and behaviors
  • Drugs and alcohol: Breaking down drugs to include depressants, stimulants, inhalants and prescription pills and the affect on the teenage body and brain
  • Impaired driving: How alcohol affects driving, the dangers of impaired driving and the increased risk of sustaining a traumatic brain injury (TBI)
  • Seatbelts: The benefits of using them and the detriments of not using them; statistics on usage and common misconceptions about seatbelts
  • Concussions: Focusing on sports concussions, signs and symptoms, and information on what to do in the case of a suspected concussion; the roles of coaches, student athletes, teachers and school systems in this process


You may have experienced this program in your school before. However, BIA-MA has completely revamped the program to be a more effective educational and preventative tool. Your students will experience new presentations with interactive question-and-answer sessions to make sure they are really consuming the information. In addition, a brain injury survivor speaker will be on hand to discuss their experiences with brain injury and to also pose situational questions to the students. When reality is standing before them, how do they respond?

Thanks to a generous gift from the Sarah W. Rollins Charitable Trust, BIA-MA is able to offer this redesigned Think A-Head program at a discounted fee of $75 for the first program and $25 for each additional program held at your school on the same day. Think A-Head aims to inform and engage students and supply them with applicable knowledge so that they can make more informed choices during a most impressionable time in their lives.

Science has proven that neurons continue to develop throughout an individual’s life, at least in some parts of the brain. In addition, fresh cells are actively involved in the formation of memory. This organ should be protected, as it serves as the “engine room” or “control room” for all of your body’s faculties. An individual’s choices affect the brain on a regular basis.

To bring the Think A-Head program to your school in Massachusetts, visit the webpage today to book a program (or more!) and learn more about how educating students about the risks and impact of brain injury helps them make better choices. To book your program immediately, click here.

Mommy of a Miracle: I learn something new every day

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. 

I have learned a lot in the past month about the public school system.  I learned that the public school system is like a wooden-shape puzzle.  Most pieces fit in the puzzle.  Some pieces require a little more effort to fit in than others.  With every puzzle there is always that one piece that no matter how hard you try to shove it into the mold, it just does not fit.  Isabella is that unique puzzle piece that does not fit.

As I mentioned in my previous blog about Isabella’s first day of school, I moved to our current town specifically for its school system.  It ranked very well on the state report card.  The special education program was known to be fantastic.  I had such high hopes and I honestly never expected it not to work out.  The first week of school was horrible.  Fighting, kicking, screaming, biting, panic attacks etc., just to walk out the door of our home.  Never mind the car ride, the 15 minutes of school and then the aftermath which consumed the rest of the day.  The second week of school is when the stress, anxiety, aggression and panic attacks took on a whole new level.  It was affecting her sleep, therapies, treatments and it became medically necessary for Isabella to have a home-based program.  School is not supposed to be this traumatic.  I quickly realized that just because a school system has a great ranking and a fantastic special needs program, that does not mean that it is the right or appropriate fit for Isabella.

I was left with a few options:

  1. In-home tutoring:  I was hesitant to go this route as we had already done that (with little success) in another town.  Isabella needs more than in-home tutoring can offer.  Also, with in-home tutoring the expectation is that the child will go back into the public school. I already knew that was not working.
  2. In-home tutoring until out of district placement could occur: I started calling and researching a variety of specialized schools.  The problem I ran into is that most programs were for emotional/behavioral conditions or cognitive conditions.  Isabella doesn’t fit into any one category because she has a brain injury.  While she has emotional/behavioral conditions, they are a result of a brain injury so therefore can’t be treated the same.  The few schools that do specialize in brain injury either do not accept Isabella’s age group or they accept her age group but currently do not have any attending.
  3. Home school: Several providers had mentioned home schooling to me.  I knew nothing about it.  I decided to research the laws, potential curricula, talked with other parents who home school and to find out as much as I possibly could.

I spent many stressful days and sleepless nights trying to figure out what to do.  I felt like I was between a rock and a hard place with not many good options.  The more I researched home school, the more I realized this was the best option for Isabella.  The laws, the policies, the application, finding and submitting a curriculum–it all overwhelmed me but I knew that she would thrive in a home school program.  I knew that I could teach Isabella because I would go to the end of the world for her if I had to.  After all, I know her better than anyone.

I started looking into therapeutic playgroups to get Isabella the socialization she needs.  I was referred to a facility that would offer Isabella the one-on-one that she requires.  They will help Isabella cope with her anxiety, teach her social skills and eventually be able to interact with another peer in a very structured environment.

I submitted my home school plan which included an online curriculum coupled with a few other programs to supplement it. Isabella already has existing outpatient therapies, in-home behavioral and soon a therapeutic playgroup.  I received an approval shortly after submitting.

I can honestly say this is the right decision for us.  Isabella loves “school at home.”  That twinkle in her eyes that I haven’t seen in years–that twinkle is there.  The excitement Isabella has every morning when she asks what we are going to learn today–that is how it is suppose to be.  Learning is not supposed to cause panic attacks, regression and aggression.  The public school experience has caused Isabella to regress so much.  It is going to take some time and a lot of work to get Isabella back on track to where she was prior to the start of the public school.  I know together we can get Isabella back to where she was and moving in the right direction.

I am not saying public schools are bad.  I live in a town that has a great public school.  I am saying that not every child fits into that cookie cutter mold.  It wasn’t appropriate for Isabella at this time.  Will I home school forever?  Honestly, I have no idea.  What I do know is that this is the right choice for us right now.  One day at a time.

“Two roads diverged in a wood, and I- I took the one less traveled by, And that has made all the difference.” Robert Frost

Mommy of a Miracle: What is Sensory Overload?

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. Today’s post talks about adjusting your surrounding to avoid sensory overload.

Imagine you are at a concert.  The music is so loud that you can’t think straight.  There are strobe lights and spotlights shining on you.  Everything seems “busy” with people, posters and signs.  The smell of perfume is so strong you can almost taste it.  Your clothes feel like they are covered in tags and you feel uncomfortable in your own skin.  You cover your ears, crawl up in a fetal position and scream for it to end… only it doesn’t.  This is life with sensory overload.  Sensory overload is common in survivors of brain injury.  Sensory overload is the brain’s inability to regulate and filter out the surroundings.

Since Isabella’s Acquired Brain Injury (ABI), she has suffered from sensory overload.  Simply things that we all take for granted, such as going into a store, are extremely stressful for Isabella.  The lights are too bright, the music is too loud, the aisles are visually overwhelming, smells of perfume and food, multiple people talking at any given time, the toys that go off as you walk by etc.  Isabella literally shuts down and by that I mean crying, screaming, shaking, hitting, kicking, biting, trying to run out of the store etc.  To the average person Isabella appears to be having a tantrum.  The reality is that her brain cannot filter out everything that it is experiencing.  This is sensory overload.

Below are some ways I have helped Isabella with sensory overload in our home:

1.)  De-clutter. 

We all have clutter.  It is a fact of life.  With that said, clutter is visually overstimulating to a person with sensory overload.  When Isabella first came home from the hospital, we had too many things on the walls.  Her toys were mostly out even though they were organized in bins. To help Isabella, we put as much as we could into a closet.  Pictures and photos were taken down and/or limited to just a select few.  Less was definitely more for her.

2.)  Adjust the noise. 

White noise sound machines and “earmuffs” (noise reduction head phones) have been key with helping Isabella.  I joke with Isabella that she has “bionic ears.”  She hears every single little noise whether it is a far off weed whacker, a drop of water, strong wind or the tiniest thing falling to the floor.  Most of us don’t even notice half of what Isabella hears.  Her brain is unable to filter it out.  The white noise sound machine helps drown out some of it.  The opposite of that is that Isabella also hears things much louder than most.  The vacuum, blender, electric can opener or alarm clock all send Isabella running, screaming and covering her ears.  To help lessen the volume, we got her “earmuffs” from a local hardware store.  Isabella wears these when I have to use a loud appliance.  They have helped her deal with thunder and lightning as well.  Isabella has even started wearing them to bed so she falls asleep easier.Stress

3.)  Adapt the lighting.

Isabella is afraid of the dark but also can’t tolerate anything too bright.  To help with this we switched to softer light bulbs.  We also use light-blocking curtains and shades, which allows us to adjust how much sunlight comes in.  Isabella always has sunglasses and she uses them whenever something is too bright.

4.)  Decrease unnecessary odors.

Most smells are very offensive to Isabella because they are so strong.  I often joke that her sense of smell is stronger than any pregnant woman I have ever met.  I stopped wearing any kind of body spray because it was always too overpowering for Isabella even if I could barely smell it.  In the event we have to use candles, they are always unscented.  Ironically, Isabella has identified vanilla as a scent she likes.  Isabella has a little vanilla tea light candle that she carries around with her.  When odors are overwhelming, Isabella will take deep breathes with the vanilla scented candle.  This has helped her a lot.  When cooking or baking, I have our windows open, fan going and an air purifier running to help reduce any odor.  Even yummy things like cookies can become offensive when the smell is so strong.

5.)  Choose clothing carefully.

Isabella can only tolerate the least restrictive clothing in the most comfortable material possible. Isabella’s clothes are all tag-less. She will only wear cotton stretch pants, yoga pants or sweat pants.  The feeling of jeans or khakis is too rough on her skin. Isabella will say they “hurt.” The gentle soft fluffy material found in most sweatshirts aggravates her as well so shirts are always worn under them.  Isabella prefers clothes with minimal print or she says they are too “busy.”

Sensory overload symptoms are as unique as a brain injury survivor.  Some survivors are more sensitive than others.  While I can control most things in our home, I can’t change every environment for Isabella.  I have strategies in place to help her at home.   I work with Isabella on applying these strategies out in the world.   The reality is that at any given moment Isabella can have complete sensory overload.  When this happens, I just pray that the world is kind and that others do not make her feel worse then she already does.  Can you imagine living in a world that sounded like a loud concert–one that had strobe lights and spot lights shining on you; a world where everything seemed too “busy,” smelled really badly or made you feel uncomfortable in your own skin?  I can’t.  This is life for a person who suffers from sensory overload.

Study for Veterans with Mild TBI Needed for Clinical Research Study

Researchers at McLean Hospital are in the process of assessing  whether a dietary supplement called citicoline can reduce the symptoms associated with mild traumatic brain injury (TBI) and PTSD. If you’re interested in participating in a study and experience these symptoms, you could be paid up to $470 for your time and participation.

You may be eligible if you are:

1. 18-35 years old

2. Returned from active duty in the past 3-24 months

3. Are free of any serious medical problems

4. Are available for weekly visits for the next nine weeks (treatment period is eight weeks long)

If you are interested, please contact McLean Hospital at 617-855-3653 or at brainstudy@mclean.harvard.edu.