Tag Archives: rehabilitation

Mommy of a Miracle – What I wish I knew

kristine & isabellaWhen Isabella was discharged from inpatient rehab we left on such a high.  I was thinking that the worst was behind us.  I was told that in six weeks life would be back to “normal”.  While I didn’t not fully believe that in six weeks all would be fine, I definitely did not imagine us to be over three years out and still so far away from the life we once had.  I didn’t fully understand that this journey was really just beginning.  Here are the top five things that I wish I knew when we left inpatient rehab:

1.)    This journey of recovering from a brain injury is just that, a journey.  It is not a race or a marathon because that implies that there is an end in sight.  With brain injury there isn’t a finish line where you can cheer that you made it to the end.  Brain injuries are lifelong injuries that forever change not only the survivor but it will also change you.

2.)    Many of us are told that recovering from a brain injury only happens in the first 12 months.  We are told that after 12 months you are stuck in that state for life.  This is absolutely false.  Isabella made the most recovery AFTER the 12 month mark.  There is no time limit or expiration on how long any survivor can improve.

3.)    There are so many great alternative treatments to look into.  I will admit that I never believed in alternative medicine.   That was until Hyperbaric Oxygen Treatment changed Isabella’s life.   It greatly improved her sleep, seizures, quality of life and much more.  Keep an open mind and know that you have options outside of traditional medicine.

4.)    It is ok to change medical providers and therapists.  As you go along this journey, you may find that your goals and those of a medical provider/therapist may not match.  Changing care is absolutely ok to do.  I actually encourage you to change therapists from time to time.  I have found that when Isabella plateau’s with one therapist that changing can make all the difference.

5.)    Find a support group that can help YOU through this journey.  In the beginning family and friends promise to stand by you.  As time goes on they will slowly fall to the wayside.  While our life has come to a screeching halt other’s lives move on and we lose that common ground.  Having support from a group of other’s on this journey is invaluable.

There are times on this journey where you can feel so alone.  Know that you are not alone.  There are many others just like you on this same journey.  To help those just beginning, what would you add to my list?

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.

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.

Mommy of a Miracle: Second Chance

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

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

Today’s blog post is part of a bi-monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares her greatest fears and joys of what she calls hers and Isabella’s “Second Chance.” To contact Kristin, tweet @KristinOlliney.

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

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

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

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

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

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

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

Celebrate the Journey with BIA-MA at Our 30th Anniversary Reception

Jim Braude (WGBH and NECN), Margery Eagan (WGBH and the Herald) and Robin Young (NPR), our honorary co-chairs, invite you to celebrate the 30th Anniversary of the Brain Injury Association of Massachusetts on October 9, 2013 from 6 to 8:30 p.m. at the John Joseph Moakley U.S. Courthouse in Boston. The festivities will begin with a reception and silent auction at 6 p.m. in the Atrium offering sweeping views of the Boston Harbor, followed by the awards presentation, live auction, and entertainment at 7 p.m. Our emcee is Mary Blake, a courageous survivor of brain injury, and an award-winning reporter and anchor at WBZ News Radio. Guest admission is $125 per person. A photo I.D. is required for admission.

Our celebration will honor four outstanding individuals who have made significant contributions to the field of brain injury. In 1980, Marilyn Price Spivack, the Neurotrauma Rehabilitation Outreach Coordinator at Spaulding Rehabilitation Network, founded the Brain Injury Association of America and Inta Hall was a co-founder of the Massachusetts Brain Injury Association, now BIA-MA. These two extraordinary women will be recognized with the Founder’s Award for creating these organizations that were the first of their kind and remain national leaders. State Senator Harriette Chandler (D-Worcester) will be recognized with the Legislative Advocacy Award for her support of public policy efforts to improve the lives of survivors, and the Compassionate Care Award will be given to Dr. Douglas I. Katz, Medical Director of the Brain Injury Program at Braintree Rehabilitation Hospital in Massachusetts for more than 25 years.

You, our supporters, our constituents, friends and fellow advocates for brain injury survivors, are invited and more than welcome to celebrate with us–this momentous occasion. If you are a survivor and are looking for accommodations, we have them! Contact development@biama.org for more information.

You can participate in our 30th Anniversary: Celebrate the Journey event in three ways! You can sponsor the event, attend the event, and put a two-line message or full-color advertisement in the evening’s program book. Celebrate a loved one who lives with brain injury, a caregiver or friend who has been instrumental in your recovery and rehabilitation, or a professional who has kept you motivated by placing an ad or message in the event program book by clicking here.

For more information, visit our website and see how the Brain Injury Association of Massachusetts Is Celebrating the Journey of 30 years of serving survivors of brain injury, their caregivers and family members and professionals in the field.

Meet Ryan: Q&A With Brain Injury Survivor Ryan Farrell


Ryan Farrell, a brain injury survivor and college student, who suffered a severe traumatic brain injury (TBI) during a  cheerleading exhibition in 2010. Ryan currently shares her story with teens through BIA-MA’s Gateway Program, often volunteers at BIA-MA events and writes blogs for us about her experiences post-injury. Today, Ryan sits down with BIA-MA and talks about how she stays so positive and what has kept her moving forward, even while dealing with challenges and setbacks.

1. You’ve been through so much as a result of your brain injury and come so far. Despite the challenges you’ve faced, how did you stay so positive and how do you continue to do so even on days that might be really difficult?

 From the moment I was actually able to grasp what had happened to me, my main commentary was basically: “OK, so how can I ‘make it better’?” I can honestly say that I have never, nor do I ever plan to wallow through the “WHY ME?!” mentality – I don’t have time for it!

I have always been a “sunny-side-up,” “glass more than half full” kind of individual. Thinking negative thoughts would use up too much time and energy – time and energy I should be taking advantage of to get me closer to my dreams and aspirations.  

2. Do you have a support system behind you and how have they helped you?

I have the strongest, most amazing support system behind me! My family – immediate & extended – is the main reason why I am able to do all of the things I have done, and will continue to do post-injury. In the initial months of rehab, it was my family members – parents, sister, aunts, uncles and cousins – who were at Spaulding Rehab Hospital (where I received in-patient therapy for 11 weeks), every single day. Whether they were rooting me on in physical therapy when I was relearning how to sit-up in my chair, or during speech therapy when I was determined to try and remember lists of names or places to exercise my short-term memory, they were the “constant” that I had in my day-to-day life. When everything else in my life was so out-of-sorts, my family kept me determined and sane!

3. What was your greatest struggle post-injury and how did you overcome it?

My greatest struggle post-injury was not anything for which there was a specific “treatment.” My short-term memory was basically non-existent throughout the first months after my injury. I could not remember the most trivial things, such as what I had eaten for breakfast, even if I was asked five minutes after finishing! My short-term memory is still something that I struggle with at times, though not as severely as I did in those first months. I have to be extra-vigilant and make sure I am persistently paying attention to make sure I do not “miss something.”

4. What was your greatest success?

My greatest success, thus far, has been returning to college in fall 2011. To overcome one doctor’s prognosis of, “Your daughter is so severely injured, that at the very best she will only ever walk with a walker,” has been the biggest barrier that I have catapulted myself over!

This fall, I am entering my senior year, and will be enthusiastically concluding my undergraduate education in spring 2014. Like I said, my greatest success thus far has been returning. Ask me again, 10 months from now, and I will state, loudly and proudly, that my greatest success has been COMPLETING!!!

5. What do you want to tell other survivors?

I want to tell other survivors everything that I have believed, and that has been told to me throughout these past 39 ½ months. YOU CAN DO ANYTHING YOU SET YOUR MIND TO, and, the only person who can set limitations on you, is you!

6. You share your story as part of our Gateway Program. What is the best part about sharing your story with others?

Public speaking has always been “my thing.” The rush I experience when I am standing in front of a group, large or small, is inexplicable. Through the Gateway Program, I am able not only to fulfill my love of this, but I am also able to positively impact and influence the teens and young adults whom I’m speaking to. The absolute best part of sharing as a part of this program occurs after I’ve shared my story. At the end of my presentation, I always inform the teens and young adults that it is now their time to speak – they can ask me questions, make comments and they don’t even have to pertain to my story. When the brave, “ice-breaker” of the group asks the first question, it allows the other individuals in the room to feel comfortable asking a question, too!

For more information on brain injury, go to www.biama.org and to read more of Ryan’s posts, click here.

Keep Climbing

Ryan FarrellToday’s blog was written by Ryan Farrell, who suffered a severe traumatic brain injury in 2010 (exactly three years ago today) during a  cheerleading exhibition. Ryan currently shares her story with teens through BIA-MA’s Gateway Program.

1,096 days – 156 weeks – Time really does fly … THREE YEARS have gone by!

If anyone had ever told me 1,097 days ago  that I would suffer, survive  and THRIVE after a brain injury, my response would have been quite simple: “A BRAIN INJURY?!? Why would I have sustained a BRAIN INJURY?” Well, it has been three years since I suffered a TBI and although I never would have imagined something of that magnitude would have ever happened to me, it has made me a stronger, more steadfast, more determined woman. Every morning when my alarm clock goes off (no matter how early it starts to loudly chime), I pop out of bed, ready to take on the day!

My determination, in all that I do, has been strengthened even more than before my injury.  I have truly discovered who my true friends are – the ones who will always be there for me, no matter what.  Not only have I discovered my true friends, but I cannot reiterate enough how significant family is. My family – immediate, extended, and sorority – are the fabulous individuals who will be there for me, no matter what.

Even on the days when I get frustrated, when nothing seems to be going the way it should, I try my hardest to stay positive.  Do I think about the things which were taken from me on April 18, 2010? Of course I do. But, do I waste my time and energy getting frustrated and upset?  No, I do not.  I am HEALING, I am STRONG, and I am ALIVE!

As Winston Churchill once said: “Success is not final, failure is not fatal: it is the courage to continue that counts.”  Surviving, persisting, THRIVING – that’s the way to go through life!