Alternative Medicine – Mommy of a Miracle

When Isabella’s Acquired Brain Injury (ABI) occurred, I suddenly found myself thrust into an unknown medical world. Prior to Isabella’s ABI, we dealt with food allergies, reflux, asthma and an immune deficiency. Those were all areas that I had navigated and felt “comfortable” with. Brain injury was a totally different ball game. Everything that I thought I knew about medicine and treatments were wrong.  I was so closed-minded in regards to non-traditional medicine.  I thought traditional medicine was the only way to go. I refused to even consider alternatives until traditional medicine failed Isabella.  Well, I learned that I needed to be more open-minded.

When traditional medicine didn’t seem to help Isabella, I went online looking for alternatives. Hyperbaric Oxygen Treatment (HBOT) was one of the alternative treatments that I found.  As we started HBOT and it had such a profound life changing impact on Isabella, I started to have a more open mind about alternative medicine.  Prior to Isabella’s ABI, I thought alternative medicine was a hoax. I felt that people were believing in the “placebo effect” where you think it is helping so you buy into it.  I thought if it wasn’t traditional medicine or traditional therapy that it couldn’t possibly work.  I quickly found out that I was completely wrong.  I not only know that HBOT works for Isabella, I have the data to prove that it does.

As time has gone on and traditional medicine continues to be a struggle to aide Isabella, I have continued to research the alternative medical options. Whenever you are researching any sort of medical treatment, whether it be traditional or alternative, here are some guidelines to follow:

  1. Talk with others who have firsthand experience. When I was researching Omega 3s, the parents in my support group provided a wealth of knowledge. I felt that they gave me the best input because they has been down this road before.
  2. Talk with your pharmacist. Pharmacists are vital when it comes to possible interactions with current medication. They often times know the current research as well.
  3. Research as much as you can online. Read articles, blogs, consumer reports, anything and everything that you can find. The more information that you have, the better chance you have of making the right decision. Determine the source of the information you find so you know whether or not to trust it.
  4. Talk with your medical team (ie: doctors, therapists, etc) about the research you find. Not every provider is going to agree with you. However, you want to make sure that the treatment you are seeking isn’t going to cause harm. For example, Omega 3s can thin your blood so you need to make sure that this is not a risk for you.

In the end, we all do what we think is best for our survivors. Having an open mind to all possible treatment options can make all the difference.  I can’t imagine where our life would be had I not found HBOT.  Thankfully I do not have to wonder.  What alternative medical treatment has been effective for your survivor?

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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.

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.

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.

College Bound – Wishing our Ambassadors an Amazing Experience !

We have been so fortunate to know Sean Rowell and Madeline Uretsky at the BIA-MA. They are both amazing people and have been wonderful additions to our Ambassador Program. If you have not heard about our Ambassador Program it is comprised of  volunteer speakers who have either sustained a brain injury or have a loved one with a brain injury. The speakers vary in age and experience, but all share a desire to tell their stories to help others avoid this devastating tragedy. Sean and Madeline have both been part of our are program after they sustained their injuries.

If you would like to become an Ambassador please contact us at 508-475-0032 and ask to speak with our Ambassador Program Coordinator !

Sean Rowell_SlopesCongrats Sean Rowell !!

This spring Ambassador Sean Rowell graduated from St. John’s High School in Shrewsbury and will be attending Georgetown University.  Sean began speaking for our program in August of 2010.  Sean suffered his brain injury from a snowboarding accident at Loon Mountain.

Sean has made a number of speeches as an Ambassador.  This year, Sean was a panel presenter at our Annual Conference.  He has spoken to numerous clubs and organizations throughout the state, including,  the Worcester Rotary Club, Millis High School, Wilmington Rotary Club, Marlborough Rotary Club, Chelmsford Rotary Club, Stow Parent Teacher Organization and Fitchburg Rotary Club. The Wilmington Rotary Club invited Sean to also present to their High School Interact Program.

After his accident, Sean became certified to teach for the New England Disabled Sports Program at Loon Mountain.  As a coach, Sean guides guests in the snow sport of their choice on the mountain.   Through his assistance, Sean enables the students to experience the thrills and independence of skiing.

BIA-MA would like to sincerely thank Sean for all his accomplishments and association with our organization.  We wish him the best of luck in his studies and would like him to continue to be a friend of the BIA-MA.

Madeline

Congrats Madeline Uretsky !!

This spring, Ambassador, Madeline Uretsky, graduated from Bishop Fenwick High School in Peabody and will be attending Simmons College.  Madeline became an Ambassador for BIA-MA in April of 2012.  Madeline’s brain injury happened from a car collision and then five months later a severe concussion while playing soccer.

Madeline has made numerous presentations for the Ambassador Program.  In April, she was a panel member at the Whitehead Institute’s 2014 Spring Lecture Series for High School Students.  She has also made numerous presentations at many Rotary Clubs across the state including; Lynn, Billerica, Swampscott, Billerica, Tyngsboro/Dunstable, and Manchester/ Essex.   Madeline has also presented at our Pediatric Conference and was a speaker at the 10th annual Boston Acquired Brain Injury Support (BABIS) Walk.

In 2013, Madeline’s story was featured in the Boston Globe in an article on concussions and her story is also featured in many internet sites focused on concussions.  Madeline also wrote a chapter in the book, Concussed! Sports-Related Head Injuries: Prevention.

BIA-MA would like to sincerely thank Madeline for all her accomplishments and her dedication to our organization.  We wish her the best of luck in her studies and would like her to continue to be a friend of the BIA-MA !

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.

“I do” – by Mommy of a Miracle

SAMSUNG CAMERA PICTURESI recently got married and the biggest question I get asked is “how did I do it with Isabella”?  Well it required some “out of the box” thinking. My husband, Joe and I knew each other from growing up in the same town.  He had read about Isabella’s Acquired Brain Injury (ABI) and reached out to me.  From the very beginning our relationship was not typical.  After all, we do not have a typical life.  Traditional dating was replaced with hanging out when Isabella was asleep.  We got engaged at home with Isabella.  When it came time to get married, we knew we had to be creative.

Isabella’s ABI has left her with debilitating anxiety.  She has no control over mood, behavior, emotions, coping etc.   Given the severity of Isabella’s condition, a traditional wedding was never going to work.  Truth be told, Joe and I didn’t even want that.  We decided from the very beginning that there was no way we would get married without her.  It was decided that it would be the three of us and a minister.  The ceremony was set up to be very short and simple.  We decided to record the ceremony because we wouldn’t have pictures other than those that the minister took at the end.

We decided to get married at a local secluded park.  We wanted to do it in the early morning on a weekday to ensure that the park would not have people in it.  I contacted the town, I explained my daughter’s ABI and the reason that I needed the park.  The town gave us a permit for an hour (we only needed a few minutes) and were offered a permit for a secondary location should it rain.  I started bringing Isabella to the park regularly so we could practice.  Each time I would put her in her stroller and walk the same route to the little pond where we would get married.

When our day finally arrived, we were all very excited.  Isabella and I wore the sundresses that we had picked out.  I had my sunflower and daisy bouquet; Isabella had her basket of rose petals to throw just like she wanted.  The weather was beautiful.  Our ceremony went as planned- short and to the point just like we had wanted.  We took a few pictures and it was done.  The rest of the day the three of us spent time doing the things that we love at home.  Our day had its ups and downs, but everyday does.  For us, the day was perfect.

I am telling our wedding story for two reasons.  The first reason, when your child has a brain injury, your life as you once knew (and planned) is over but that doesn’t mean that you still can’t find happiness.  The happiness will be an altered version from what you may have originally thought but you can find it if you try.  Our life is far from perfect but we find happiness in the simple joys of everyday life.  On our wedding day we cherished the moments that we had.  It was the second happiest day of my life, the first being the day that Isabella woke up.  The second reason I am sharing our wedding story is because when your child has a brain injury over time most of the people that swore they would be there for you walk out.  As those people were leaving, my future husband was walking in.  Often times we get so focused on the losses that we miss the possible opportunities.  Alexander Graham Bell once said “When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.” I am so glad that I opened that door.

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.

Introducing our Newest Guest Blogger Tessa Venell

You Never Forget How to Ride a Bike

tvenell riding bikeFor Mother’s Day, my brother and I went home for the weekend to see my parents who live in Acton, a rural town in Southern Maine where I grew up. When I awoke on that Saturday, I went for a run around the three-mile loop I used to do when I was in high school, but had only run once since graduating from college. The loop starts on a dirt road at the end of my parent’s driveway and winds through the woods and past a hill overlooking the lake that I swam in as child.

After I ran, I had lunch and got in the car with my parents, my brother, and his girlfriend to drive to a trailhead nearby to go for a short hike. My mom wanted to go for a hike for Mother’s Day, continuing a tradition that started when I was in grade school. As I was hiking, I felt surer of my footing than I had during the first few hikes I had attempted, and I relied less on my dad’s arm for support. Jazzed up after the hike, I asked mom if she’d spot me on the bike. For the first time in eight years, I rode a bike all the way up and back down the hill.

It wasn’t the first time I had tried to ride my bike since suffering a traumatic brain injury eight years ago. In 2006, I was involved in a car accident that had left me in a coma and unresponsive for 3 weeks before being admitted to the “Slow to Recover” program for 100 days at Braintree Rehabilitation Hospital. However, it was the first time I actually enjoyed riding a bike since before the accident.

I had tried riding a bike a couple of times before, but my attempts always ended in frustration that boiled over and quickly led to yelling and hurt feelings for the person that was trying to help me. Those first attempts at riding a bike left a bad taste in my mouth and I didn’t think I would do it again. Riding a bike was not the most important activity to me, if I had to lose something; I was fine with this being the thing.

Those initial attempts at riding a bike were a stark reminder of the limitations I still face. At the time, I was just starting to get more confident, feeling like I could finally start to grasp my recovery and better manage my life with TBI. I didn’t like to be reminded of my limitations and not being able to successfully ride a bike left me feeling frustrated, and I didn’t like remembering what it felt like to have those limits. Memories of my recovery after the accident started to come flooding back, and the various obstacles I faced during the time I spent in three different hospitals over the course of nearly a year.

But that Saturday, the day before Mother’s Day, was the first time I had considered riding a bike for fun, even after running and hiking. Both the running and hiking felt easier that day and finally I was looking to be challenged again. Even after failing to ride a bike multiple times, I was feeling confident enough in my balance and strength to try again. And even though I had yelled in frustration during my first tries, on my way back down the hill my mom was waiting there for me, like she had been waiting to support me through my whole recovery.

My neurologist at Braintree, Dr. Douglas Katz, once told me that I would continue seeing changes in my recovery even five to six years after the accident. At the time, I looked at this with disappointment: I wanted to be recovered now, not in six years. Gradually, I began to see things from his perspective, and still notice even small changes with my memory, balance, and emotions. That progress, no matter how small, excited me, and propelled me to new stages in my recovery. Even eight years later, the confidence I was starting to feel with my body while running and hiking motivated me to get back on my bike.

And though I had questioned this initially, I found the old adage to be true: You never forget how to ride a bike. Sometimes you just need patience to remember.

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Guest Blogger, Tessa Venell, is an independent journalist and documentarian. Currently a grant writer at The Ivy Street School, she is writing a book about her recovery from a brain injury that she sustained when a severe car accident left her in a coma. You can see more of her work at tessavenell.com.


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.