The Power of Support Groups “To the Memory of Nicholas Fox” – Mommy of a Miracle

“Dedicated To the Memory of Nicholas Fox”

I started a support group for parents of children with brain injuries almost two years ago.  I desperately needed that connection with others who could understand and relate to this journey.  There is a comfort that can only be found when another parent says “me too”.  On a journey where you often feel so alone and like no one “gets it”, it is nice to have one place where others can understand and help. Some of the things I have learned are:

  1. Support groups have helped me learn about services that I otherwise never would have heard about. Doctors will tell you about the physical therapy, occupational therapy and speech therapy, however, there are so many other options in addition to those. One service that I learned about through my support group was aquatics therapy. Once I researched it, I quickly found a place for Isabella to get “swimming therapy”. She made huge strides with this therapy.
  2. Support groups have taught me about alternative treatments that I otherwise never would have heard about. Prior to my support group I didn’t know about Omega 3s for brain health. I had never heard of taking B2 for migraines. I researched them both and then got approval from Isabella’s doctor. Both have helped her.
  3. Support groups have taught me about “ins and outs” of insurance. Let’s face it, insurance companies aren’t going to offer to pay for something if they don’t have to. Often time’s things like transport strollers, car seats, formula and other medical items can be covered by insurance. It is about knowing what to ask from medical providers and how to submit it to insurance.
  4. Support groups have taught me about financial resources that can help offset the cost of certain items that are not covered by insurance. Prior to my support group I didn’t know about scholarships, organizations, grants and projects that will help pay or provide a service needed. When I was raising money for Isabella’s Hyperbaric Oxygen Chamber, I connected with quite a few that were able to help meet our goal.
  5. The most important thing that support groups have taught me is that I am not alone on this journey. I have other parents who “get it”. I can ask questions and get opinions knowing their answers are from the heart because they too are walking this journey. Having someone else say “me too”, the power of those words I can’t even begin to explain.

There are so many kinds of support groups out there.  You can join one that you can physically go to or there are many online.  It’s important to find the right support group for you.  No two groups are alike.  If you find a good one group support, you will wonder how you ever made it on this journey without them.

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. 

Enjoy the Moment – Mommy of a Miracle

A brain injury changes everything and everyone.  Isabella and I are both completely different people than before.  Isabella’s carefree, social, happy-go-lucky, outgoing personality has dramatically changed.  However, on this journey, I have been blessed with glimpses of “my Isabella” the person she was before her Acquired Brain Injury (ABI).  In these glimpses there is no brain injury – there is just Mommy and Isabella having an amazing moment.  I never know when or if another glimpse will happen, it could be in a few days, a few months or even longer.  I have learned to cherish these moments.  These are my reminder that Isabella is still in there and she is fighting like crazy to get out.

It is so easy to tell others to slow down and enjoy the moments, however, in my opinion you only grasp that concept if you have looked at the reality of losing it all.  Isabella is my life and my world.  I almost lost it all.  Each day that I wake up, I am blessed that I can get another day with her.

As Isabella gets ready to turn nine on February 23rd, I think back on how our life has changed so much in the course of the last nine years.  When your child is born you plan to enjoy and cherish every moment.  As time goes on, life steps in and the small things in life are often lost.  Then something tragic happens and it makes you stop and rethink everything.  As I sat in the pediatric intensive care unit (PICU) four years ago watching Isabella dying before my eyes, I made a promise. I promised that I would never take the small moments for granted it again.  I vowed that I would learn to truly live in the moment.

I encourage you to do the same.  Listen to the crickets, jump in puddles, laugh and be silly, watch the sunset, smell the flowers, catch snowflakes- enjoy the moments with your child.  You can’t ever get them back.  In an instant it can all change and never be the same.

“Enjoy the little things in life for one day you’ll look back and realize they were the big things” Anonymous

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. 

World Encephalitis Day: February 22, 2015 – Mommy of a Miracle

As we approach the second annual World Encephalitis Day on February 22nd, I wanted to talk about the viral infection that left Isabella with an Acquired Brain Injury.  It was Thanksgiving Day, November 25th, 2010 when Isabella came down with sudden acute encephalitis.  At the time I had no idea what encephalitis was.  I remember hearing something on the news about mosquitos having it but that was the extent of my knowledge.  I quickly learned more than I could have ever imaged possible.  Encephalitis is inflammation in the brain usually as a result of an infection whether it is bacterial or viral.   According to the University of Maryland Medical Center 10,000-20,000 cases of encephalitis happen every year in the United States.  Like a brain injury, encephalitis does not discriminate.  It can happen to anyone, any age, any race, and at any time.

In minor cases of encephalitis the symptoms can mimic those of the flu.  These flu-like symptoms can be headache, fever, muscle aches and fatigue.   In major cases of encephalitis the symptoms are much more severe such as behavioral and personality changes, fever, headache, vomiting, lethargy, reduced or lost consciousness, disoriented, seizures, weakened muscles, light sensitivity, difficulty with speech vision or hearing, memory loss, coma and even death.  I initially brought Isabella to the emergency room because she was dehydrated from vomiting, she had a severe headache and she was confused/disoriented.  Within twenty four hours of being admitted, Isabella had a fever, seizures, increased vomiting, lethargy, light sensitivity, inconsolable pain from a headache and eventually she began to crash and die before my eyes.  Isabella became unresponsive, her sodium plummeted and her body started to shut down.

The key to surviving encephalitis is in seeking medical attention immediately upon the start of symptoms.  I was told had Isabella been at home she would have died.  Encephalitis can have many causes.  Some forms such as Eastern Equine Encephalitis, La Crosse Encephalitis, St Louis Encephalitis, West Nile Encephalitis are caused by viruses from insects such as mosquitoes.  Other forms of viral encephalitis include Herpes Simplex Virus, Varicella zoster virus, Epstein-Barr Virus, measles and mumps.  Sometimes encephalitis is caused by bacteria, fungus, parasites, toxins or autoimmune disease.  Proper diagnosis is essential in receiving appropriate treatment. Diagnosis is usually done through physical exam, CT scan, MRI, lumbar puncture, EEG and blood work.  Treatment varies depending on the type of encephalitis.  The source of Isabella’s encephalitis was never determined.  As a result Isabella was placed on antivirals, antibiotics and anything else that could possibly treat the encephalitis.  As tests ruled out potential causes, medications were discontinued.

Most people who have mild encephalitis, when treated appropriately have a great chance at fully recovering.  Those people like Isabella who are diagnosed with a severe case of encephalitis can have serious complications such as permanent damage to the brain.  Encephalitis led us on this journey to recovering from an ABI.  It is a miracle that Isabella survived.  As World Encephalitis Day approaches I encourage you to learn the symptoms and help raise awareness for this horrible condition.

#SHOWYOUKNOW #WED222

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. 

Football – Mommy of a Miracle

I grew up in Patriot Nation, where football is life.  I have loved football for as long as I can remember.  With the Super Bowl approaching, I wanted to share how football has changed for me since Isabella’s Acquired Brain Injury (ABI).  Prior to Isabella’s ABI I didn’t even know what a concussion was let alone the aftermath of one.  Quite honestly I didn’t even know what a brain injury was.  It is embarrassing to admit that.

When Isabella got sick with sudden acute encephalitis, the reality of life with a brain injury was overwhelming.  That naïve view I had on football was forever changed.  The realization of what a concussion is (a brain injury) and what that means to someone’s life made it difficult to enjoy the sport I grew up loving.  Those hits in football that looked bad before now had a new meaning.  I now know with each hit to the head that lives can be changed.  That innocence I once had about football is now gone.

The first two years of Isabella’s ABI, I struggled with my love of football.  How could I love a sport that puts others at great risk?  How could I stomach watching hit after hit knowing that all it takes is just one to change a life?  What I came to realize is that we all take risks in life.  We take a risk when we play a sport, when we drive, when we go on a plane etc.  Some people chose to take greater risks.  While I may not always agree with the risks they take at the end of the day it is always their choice.

I still love the sport of football.  I have a new found respect for those that leave the game injured and stay on the sidelines.  I admire those that walk away from the sport they love because of their health.  I cringe when I hear a professional athlete brag about playing with concussions and/or purposely deceiving the system.  I wonder what message that sends to our children.  Some will call for an end to football.  I don’t think that is necessary.  I think ensuring the right rules and guide lines are in place is the key.   The hard part is making sure that they are followed.

How has sports changed for you since your experience with brain injury?

Guest 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.

SAMSUNG CAMERA PICTURESLegal 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. 

Mommy of a Miracle – New Year

As a parent we tend to put ourselves on the backburner when it comes to our wants and/or needs.  As a parent to a child with a brain injury, we often don’t even make it on the stove never mind the back burner.  Each New Year, I make goals for our family and last year I decided that one of my goals would be to lose weight.  I decided that I was worth the $20/month to get healthy.  I had gained weight over the prior year and I had no idea how seeing as nothing had changed.  I joined a popular weight loss program.  I soon found out that if you eat really healthy (like we do) and you don’t eat enough it will cause you to gain weight.  What started out as a plan to lose weight, quickly became a life style change.

My challenge to you, the caregiver, in this New Year is to set a goal for you.  In our lives there are so many things in life that we are not able to change such as our loved one’s brain injury but there are just as many things that we can change if we try.  The point of the goal is to have it be attainable and something to better your life.   You are worth it.  Whatever “it” is.  We need to take care of ourselves so that we can in turn best take care of our child.

When determining the goal, keep in mind that it doesn’t have to be this big lofty goal.  Some ideas:

  1. Take 5 minutes to yourself. Whether it is drinking coffee before everyone is awake or simply just enjoying the moment of quiet.
  2. Improve your health. Whether it is losing/gaining weight, exercising or treating the health issue that you keep putting off. Your health matters just as much as your loved ones does.
  3. Do what you love. That hobby that you enjoyed before your child’s brain injury, it may be the perfect outlet for times of stress. Consider adding it back into your life in small spurts.
  4. Get out of the house for something other than doctor’s appointments, therapy, treatments etc.

Caregiving is a very selfless act that we do.  We are overworked, overtired, emotionally drained and yet we continue to take each day as it comes often with a smile.  Truth is none of us chose this life. In an instant it all changed and life as we knew it would never be the same.  Yet we do this job because we have to and personally, I wouldn’t want it any other way.  Along this journey it is very easy to lose sight of ourselves.  My hope for you is that this is the year that you start to put yourself back on the stove.

Happy New Year!

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. 

Gifts – Mommy of a Miracle

Gifts

Since Isabella’s Acquired Brain Injury (ABI), gift giving has become such a challenge.  With the holidays approaching I have found myself struggling to find appropriate gifts.   While Isabella is 8.5 years old she is much younger developmentally and cognitively.  Isabella is unable to play independently and unstructured activities trigger her.  All activities need to have a clear beginning and a clear end.  So after much research and thought, these are the questions that I considered when purchasing gifts:

  1. What are Isabella’s interests? Isabella loves animals, dinosaurs, games, books and movies. So I started to research for ideas based on those interests. I found several new games that were animal or dinosaur based. I also came across books that included a ton of animal and dinosaur facts with real pictures. In addition there is a movie from the library that Isabella loves and I learned that there is a whole series of other animal stories just like it.
  2. What skill deficits can we work on? Isabella needs help with fine motor skills, balance and coordination etc. I looked for gifts that incorporated those skills through fun play. Isabella enjoys crafts so when I came across a pipe cleaner animal kit I knew it would be a hit. Doing crafts also works on fine motor skills. When I found a WII dance game that included many of Isabella’s favorite Disney movies I knew it would be a lot of fun while also helping with balance and coordination.
  3. What items can we use with homeschool? Having watched Isabella do therapy for four years, I have learned how to make “work” fun through play. As a result I am always on the lookout for new items that can help me teach. Reading is more fun when you have finger puppets so when I found animal ones I knew Isabella would love them. I also finally got a spy kit for Isabella which can be incorporated in so many ways. It is all about thinking outside the box.
  4. How can I improve ADLs (activities of daily living) skills? Cutting Isabella’s nails is such a process. Her tics and inability to sit still make it challenging at best. However when we have “Mommy and Isabella Salon”, it goes smoother. Isabella loves our “salon time” so having a foot spa, mani/pedi items and a fun printed bathrobe will make it that much more enjoyable.

Once I stopped focusing on what I couldn’t get Isabella and started focusing on what I could, the gift ideas got easier.  My thought is that by incorporating Isabella’s interests with her needs it will improve her condition.  I hope that these tips help you in finding gifts for the survivor in your life.

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. 

#GivingTuesday at BIA-MA: Brain Injury Affects All

 

Ryan and Courtney November 2014

Ryan and Courtney
November 2014

The mission of the Brain Injury Association of Massachusetts (BIA-MA) is to create a better future for brain injury survivors and their families through brain injury education, prevention, advocacy and support.

When a brain injury strikes, it does not affect just affect one person – it affects their entire family and community.  Hopes, goals and accomplishments for everyone involved are often sidelined indefinitely after a TBI.

In April 2010, Ryan was performing with her cheerleading squad at a fundraising exhibition and a flyer on the top of her stunt group fell and landed on her.  She did not receive immediate medical attention and was encouraged to keep performing.  A short time later, she collapsed and did not regain consciousness.  Ryan had sustained a traumatic brain injury (TBI), along with a collapsed lung and fractured vertebrae in her neck.  She had no idea what a brain injury was and then realized her life would not be the same.  Read more about Ryan on the BIA-MA website.

Courtney, Ryan’s sister, relays the impact of brain injury on a family member:

At the time of Ryan’s injury, I was a senior in college getting ready to graduate- I had come home for the weekend and was getting ready to go back up to school that afternoon when my mom got a phone call from the paramedics who had been first responders to the Ryan’s injury. They asked my mother “if she was Ryan Farrell’s mother and that she needed to come up to New York because her daughter was in the hospital”. At this point, we were not told anything about the severity of her injury. I decided to go up to New York with my mom and decided I would just return to school the following day (little did I know that I wouldn’t be returning to school until the end of that week to get a change of clothes).

Ryan’s college is 3.5 hours away from our house- while still in Western Mass on the Mass Pike, we received a call from the neurosurgeon who needed permission from my mother to operate on Ryan’s brain as she had suffered from a severe brain injury and needed immediate surgery to stop the bleeding on her brain. The surgeon assumed that my father had been driving the car. Upon hearing this, I started hyperventilating (we had just lost my grandmother to an aneurism in December of that year).  I kept telling myself that it would be okay and that she would be fine although we really had no idea how she was doing or if she was even going to live through the surgery. When we arrived at the hospital we were still not given clear information (usually seems to happen in times like this). I honestly don’t really remember what happened after that- my father was working in Albany at the time so he got to the hospital later that afternoon. The neurosurgeon met with us that afternoon and basically told us that it did not look good and that we should prepare for anything.

We were allowed to go see Ryan in the ICU that night- I almost vomited/fainted upon seeing my sister hooked up to every machine imaginable including a respirator. I remember thinking that it wasn’t real life, just a bad dream, this is something you see on Grey’s Anatomy not in real life and especially not to your sister. Other family members showed up that night and we all “slept” in the ICU waiting room on the floor. That night, one of the ICU nurses, Patty, told me something I would never forget- she said that “she could see in my sister’s eyes that she was still there and would come back”; that sentence was my driving force to keep strong for Ryan’s recovery. About a week later, the day after I had left (my mom made me go back to school) Ryan underwent an emergency craniotomy, due to too much pressure and swelling on her brain. I remember thinking of what the nurse had said to me on the first night she was there and I knew that she would be alright, and I still believe it is true to this day when I look at Ryan and see how far she has come.

I want to share my story and my sister Ryan’s story because I feel that it is important to show that a brain injury affects everyone in the survivor’s life, especially family. Although I did not go through what she went through mentally and physically as far as her recovery process- I felt helpless then and still feel helpless at times now because I can’t help her through her daily struggles. I went through a guilt phase where I constantly struggled with why it happened to her and not to me. To watch your best friend and sister struggle and have no power to help them is like being in a nightmare where you have absolutely no control. Throughout Ryan’s injury, I learned new ways to be supportive and sometimes the best support was just being there even if I had nothing to say. I have honestly never in my entire life met someone who is stronger or more of an inspiration to others than my younger sister (and I’m not just saying that because she is my sister!) She has honestly overcome more obstacles in the past four and a half years than most people will experience in their entire lifetime. Her injury was a life changing event and I can’t say that I would have been able to handle it with the same strength, grace, optimism, and will power as she has. Even with everything she has been through, I don’t think I know anyone who is more passionate about life and making others happy than she. She is always smiling and bringing positive energy to every person she encounters,- perfect stranger or best friend- and I don’t know many people who can say that they are capable of doing that.

Each year, there are 64,000 new cases of Traumatic Brain Injury reported in Massachusetts alone.  The Brain Injury Association of Massachusetts is committed to helping survivors, families and caregivers through the difficult healing process that follows a brain injury.

The Brain Injury Association of Massachusetts strives to ensure that your gift will make a real difference for the brain injury community in the Commonwealth.  Your generosity today will help us to continue to:

  • Advocate for practical legislation to prevent brain injury and for improved support for brain injury survivors.
  • Offer programs to raise awareness and prevent TBI’s with school-based programs as well as offer sports concussion safety information for coaches and parents to protect players on and off the field.
  • Educate caregivers, families and survivors about brain injury with annual conferences, workshops and provider trainings.
  • Increase the number of statewide support groups for survivors, families and caregivers as well as provide resources and information through our helpline.

Please give – Your gift has the power to create a better future for brain injury survivors and their community.  There are two easy ways to donate:

  • Call BIA-MA at 800-242-0030

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.