Sleep – Mommy of a Miracle

Sleep is so important for everyone especially those with a brain injury.  Isabella had always been a horrible sleeper.  Hyperbaric Oxygen Treatment greatly improved her sleep.  Prior to HBOT, Isabella was up every 10-15 minutes all night long.  The nights seemed never-ending and then the days were extremely hard because we were both exhausted.  In addition to HBOT, we have found some other things that help Isabella sleep.  Below are some of those things:

1. Noise reduction earmuffs and a white noise sound machine. Isabella sleeps with both of these every night because she says it helps her “sounds” (hallucinations). Isabella also has what I call “bionic ears”. Isabella can hear everything and the slightest noise is so loud to her. Both of these items help drown things out so that Isabella can fall asleep. The noise reduction earmuffs we purchased at a hardware store. The white noise sound machine can be found at any retail store.
2. Weighted blanket. The deep pressure from the blanket helps Isabella’s body stay calm so she can fall asleep. We were originally introduced to weighted blankets at Occupational Therapy. Several times Isabella wanted nothing to do with it. Every once and a while we would try again. One day Isabella loved it and she began to seek it out. Upon researching I found out that there are many benefits to sleeping with one. A friend had one custom made specifically for Isabella. You can find them on many specialty websites.
3. Bed side rail. Isabella had a bedside rail prior to her brain injury. She has never been able to sleep without one. Isabella recently outgrew the one that she had so I did some research to figure out what to buy. I purchased a bed side rail from an online medical supply company. This one has an adjustable frame to fit any mattress size. It also has a weight limit that far exceeds what she would need.

When you have a child with a brain injury simple things like going to bed at night require more than the typical items.  Having the right sleep aides in place can make all the difference.

“Let her sleep for when she wakes, she will move mountains” Napoléon Bonaparte

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-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.  Copyright 2015 BIA-MA.

Katie Atchue – Giving Back on #GivingTuesday

Tuesday, December 1, 2015 is #GivingTuesday. A global day dedicated to giving back. Charities, families, businesses, community centers, students, individuals and survivors will come together for one common purpose: to celebrate generosity and giving back.

It’s just one day out of the year, but the Brain Injury Association of Massachusetts celebrates our generous donors and dedicated volunteers every day! We appreciate every cent, every second. We also know that there is so much more that you all do in support of your communities. You donate to other deserving non-profits; you give of your time and energy in so many ways.

Take, for example, Katie Atchue.

Katie suffered an arteriovenous malformation (AVM) hemorrhage when she was eight years old. The condition, which is present at birth, happens when arteries in the brain connect directly to veins without the necessary capillaries between them. This incident occurs in less than 1% of the population and the results can be devastating.

She lost her ability to speak and eat, her short term memory was affected, and she sometimes finds it difficult to focus. “I had to learn how to walk all over again, hold my head up by myself and how to use my communication device,” says Katie. “I had to learn to do a lot of things again.”

Katie uses a DynaVox machine and sign language to help her communicate and share her sense of humor with us all!

Six years ago Katie and her mother, Joan, were looking for a project they could do together that worked with Katie’s abilities. With an affinity for animals, they decided on pet beds. Katie picks out the fabric and coordinating ribbon and toy, Joan cuts out the fabric, and Katie does the sewing and stuffing. It’s truly a team effort that they enjoy doing together.

As a student at Cotting School in Lexington, Katie was volunteering for Buddy Dog in Sudbury. She decided to donate 12 pet beds to the animal shelter so the pets in need had a comfy place to sleep. This caught on. Over the years Katie has donated her beds to animal shelters and various fundraisers. Friends and family started purchasing the beds, and Katie now makes and sells her beds by request.

In addition to her donations in-kind, Katie established Team Katie’s Angels for the BIA-MA’s 1st Walk & Roll for Brain Injury in September. She donated proceeds from the sales of her beds and pillows to BIA-MA and Katie’s Angels was one of the largest teams at the event, fundraising over $1,700!

This is the true spirit of giving back! Thank you Katie (and the Atchue Family) for all of your support, not just to the brain injury community, but to YOUR community!

 

Support BIA-MA: Sign up for AmazonSmile

It is shopping time!  Black Friday and Cyber Monday are just a few days away!  Amazon offers a simple and automatic way to help BIA-MA – at no cost to you!  Simply login to Amazon through smile.amazon.com, select BIA-MA as your charitable organization of choice, and .5% of your purchases will be donated to BIA-MA.

GO TO SMILE.AMAZON.COM NOW TO GET STARTED!

What is AmazonSmile?

AmazonSmile is a simple and automatic way for you to support your favorite charitable organization every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. You can choose from nearly one million organizations to support.

How do I shop at AmazonSmile?

To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device. You may also want to add a bookmark to smile.amazon.com to make it even easier to return and start your shopping at AmazonSmile.

Which products on AmazonSmile are eligible for charitable donations?

Tens of millions of products on AmazonSmile are eligible for donations. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages. Recurring Subscribe-and-Save purchases and subscription renewals are not currently eligible.

Can I use my existing Amazon.com account on AmazonSmile?

Yes, you use the same account on Amazon.com and AmazonSmile. Your shopping cart, Wish List, wedding or baby registry, and other account settings are also the same.

How do I select a charitable organization to support when shopping on AmazonSmile?

On your first visit to AmazonSmile (smile.amazon.com), you need to SELECT BIA-MA as your charitable organization to receive donations from eligible purchases before you begin shopping. We will remember your selection, and then every eligible purchase you make at smile.amazon.com will result in a donation.

How much of my purchase does Amazon donate?

The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. The purchase price is the amount paid for the item minus any rebates and excluding shipping & handling, gift-wrapping fees, taxes, or service charges. From time to time, we may offer special, limited time promotions that increase the donation amount on one or more products or services or provide for additional donations to charitable organizations. Special terms and restrictions may apply. Please see the relevant promotion for complete details.

 

Five Years Ago- Mommy of a Miracle

Five years ago I was just a typical mom to a 4.5 year old.  Isabella was a smart, beautiful, happy go lucky preschooler.  She loved soccer and made friends where ever we went.  Isabella was social to a fault.  We were adventurous and constantly on the go.

Five years ago on November 25^th, 2010 it was the first Thanksgiving that Isabella wasn’t sick.  All prior Thanksgivings were spent in the hospital or at home sick on the couch.  I was so excited that we would get to celebrate with family and friends.  Thanksgiving night at 7pm Isabella started screaming with a migraine.  By 7:10pm the vomiting started and by 10:38pm Isabella was confused and disoriented.  As I carried her to the car I had no idea the car ride would take so long as I had to keep pulling over to help her.  As the clock struck midnight, I carried my baby girl into the emergency room having no idea that our lives were about to change forever.

Five years ago I had only heard of encephalitis with regards to mosquitos.  I had no idea that it was this horrible condition that destroyed your brain.  I thought comas were like you see on tv where the person wakes up and they are fine.  I didn’t realize how precious our brain was.  I thought your heart was the center of your body keeping everything going.  I didn’t know that the brain is responsible for your heart, breathing, moving, talking and every other function in life.

Five years ago I didn’t have much faith in anything.  I had watched my Nana and one of my best friends die, horrible deaths due to horrible diseases.  I couldn’t wrap my mind around the fact that doctors were telling me that my baby wasn’t going to make it through the night.  I pleaded with God or anyone that was listening to please save my daughter and that I would handle whatever the consequences were of that choice.

Five years ago our journey began.  A journey that has been bittersweet.  I have seen some of the most horrible, heartbreaking things happen to my baby.  I have held her stiff, distorted body praying for her pain to end.  I have watched as she lay in a coma not knowing if she would ever wakeup and not wanting to sleep if it meant missing a precious moment with her.  I have also witnessed a miracle as I watched Isabella take her first breathe off the vent and eventually wake up.  I have watched my daughter become my hero and the person that I admire most.  I never knew how proud I could be as I watched her fight and determination shine through on some of our darkest days.  I didn’t know I could possibly love someone as much as I love Isabella.  Five years ago everything changed and nothing will ever be the same.

“And once the storm is over you won’t remember how you made it through, how you managed to survive.  You won’t even be sure, in fact, whether the storm is really over.  But one thing is certain.  When you come out of the storm you won’t be the same person who walked in.”  Unknown

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-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.  Copyright 2015 BIA-MA.

National Caregiver Month – Donna Bonia’s Story

Rob Bonia sits with his mother Donna behind him, who is also his caregiver since he was 14yrs old outside their Middleboro home.

My name is Donna Bonia and I am the mother of a fantastic son named Rob. When Rob was 14 years old, he was diagnosed with a rare form of brain cancer called CNS Lymphoma. At diagnosis he was only given 30 days to survive – chemotherapy and radiation helped him to beat those odds, but left him with cognitive and behavioral issues that we did not know how to manage. Rehabilitation services in 1992 were not as advanced as they are now. His high school was not equipped to either understand or handle his specialized learning needs. So, for several years we struggled, searching for whatever help we could find, but only getting as far as speech therapy.

Through a friend, we found out about a newly formed support group for survivors of brain injury and their caregivers. When Brilliant Buzzards group leader Vicki Carr contacted me it was like having a ray of sunshine penetrate our dark cloud. Finally, we found a group of folks who understood what we were going through.

At our first meeting, Rob and I felt right at home with all of the other survivors and their caregivers. That night I also met Sandy Topalian, the manager of the Southeastern Regional Office of the Brain Injury Association of Massachusetts. I shared with her my frustrations about the system. She gave us information about possible services and resources for survivors of brain injury. However, I continued to be frustrated over the lack of services and resources for caregivers. We needed a place where we could share our concerns, express ourselves, and celebrate our victories with people who understand.

After brainstorming with Sandy over possible ways of helping caregivers, I was “elected” as facilitator of the new Caregiver Support Group of East Wareham. My goal is to provide caregivers with an emotionally supportive environment guided by those with mutual understanding!

November is National Family Caregivers Month and I’m once again joining forces with BIA-MA to say thank you to all of the wonderful caregivers across the state. BIA-MA provides support groups and information resources for caregivers and educational workshops and conferences on a variety of topics geared to both survivors and caregivers. If you are frustrated or need resources, please don’t hesitate to contact someone in your region!

If you know a caregiver, show your appreciation – and share it with BIA-MA!

BIA-MA Regional Offices:

• Central Region (Westborough, MA) –                      (508) 475-0032
• Southeast Region (East Wareham, MA) –               (508) 743-0333
• Western Region (Pittsfield, MA) –                            (413) 443-0200

Share your Caregiver Story:

• Visit us on Facebook https://www.facebook.com/BrainInjuryMA/
• Or email your story to development@biama.org

November is National Caregivers Month!

CAREGIVERS!  THANK YOU FOR ALL YOU DO!

The Brain Injury Association of Massachusetts (BIA-MA) is recognizing the month of November as National Family Caregivers Awareness Month. More than 65 million people in the United States provide at-home care for a family member. Family caregivers assist with personal care, provide transportation, act as medical advocates, and offer emotional support for those who cannot live independently, and they do this while managing the demands of their personal lives, their jobs, and their families.

Do you know a caregiver? Do something to show your appreciation, support, and admiration:

• Make dinner – or send a card – or call – that’s all
• Donate your time – take over for a few hours so the caregiver can take some “me” time
• Run an errand – or two – or three
• Plan a project day to help with yard work, house work, or any other kind of work
• Stop by for a movie night; bring the movie and some popcorn
• The list is endless – bottom line; tell them you know how hard they are working!

Take a photo of your act of appreciation and send it to us – with your story – so we can spread the word about how awesome caregivers are!! Share it with us on Facebook or send to development@biama.org

Are you a caregiver? Send a photo of you and your loved one and tell us why you do what you do.

BIA-MA provides support groups and information resources for caregivers as well as educational workshops. If you or a loved one have questions or require support please visit www.biama.org or call 508-475-0032.

THANK YOU FOR ALL YOU DO!!  Family matters – and so do you!

Sincerely,
Nicole Godaire
Executive Director

Coming Home – Mommy of a Miracle

As a parent to a child with a brain injury, we long for the day that we can finally take our survivor home from the hospital. I was terrified to bring Isabella home.  She was a different child than the one I walked into the emergency room with.  I was different too.  Life as we knew it had forever changed.  I had seen Isabella dying before my eyes and I watched her survive against all odds.  In the hospital I was constantly surrounded by doctors, nurses, therapists, someone was always there to help. Bringing her home meant I was going to be on my own to do it all and I was terrified.    I was afraid I would make a mistake or do something wrong.  I was afraid that I wouldn’t know what to do.

Looking back almost five years, these are a few of the things I wish I knew about prior to leaving the hospital:

1. Make sure outpatient services are set up before you leave the hospital. Ours were not and as a result Isabella went a month without any sort of physical therapy, occupational therapy or speech. I had a child that was physically a toddler just learning to walk. She had sensory needs that I didn’t know how to help with. Isabella struggled with being able to get her words out or even remember what things were called. Not having services for an entire month was challenging at best.
2. Safety proof your house. When Isabella got sick she was 4.5 years old. However when I brought her home, cognitively she was years younger. It was like having a baby all over again. There was no sense of safety awareness. Everything was mouthed. I quickly found that all plugs needed to be recovered, small toys needed to be put away, etc. Things I never even had to deal with when she was a baby were now a safety concern.
3. Find a medication system that works. When we came home from the hospital Isabella was on a ton of medication. I had to learn quickly how to organize it all and how to ensure all doses were taken. I started an excel spreadsheet listing each one, reason for taking, dosing amounts, and times to take. I also had a place to check it off as I went. I had the medicines lined up according to their dosing schedule in a cabinet so that I could have easy access.
4. Find a support group. You will need it. You will learn that people eventually go about their lives and move on from your child’s brain injury. While yours will seem at a standstill. Having a support group to help you cope with the changes will end up being your lifeline. This journey gets lonely really fast. I honestly have no idea how I managed the first two years without mine. Support groups can be online through social media or physically in person. Find one that fits with your needs.

Most importantly when you are bringing home your child, remember that you once felt overwhelmed about bringing home a newborn. You successfully brought them home.  Mistakes happened, adjustments were made and it was a lot of work.  However at the end of the day it was worth it.

“I’m not telling you it is going to be easy, I’m telling you it is going to be worth it”

The Notebook

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-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.  Copyright 2015 BIA-MA.

1st Cog-Rehab Bill Hearing – Nov 5, 1pm – State House

The 1st Cog-Rehab Bill Hearing will be at the Massachusetts State House on Nov 5, 2015 at 1pm.  Please help us get this bill passed!

Did you have a NIGHTMARE experience having or not having your cognitive rehabilitation covered by your commercial health insurance company?  Do you feel worse off today because of lack of or limited coverage for cognitive rehabilitation?  Were there financial implications, emotional, or employment implications?

How can you help:  Please come to the Cognitive Rehabilitation Bill (Cog-Rehab) Hearing and share your experiences at the State House. The hearing for the Cog-Rehab bill is tentatively scheduled to happen on Thursday, November 5, 2015 at 11:00 a.m. at the State House in Room A2.   Following the hearing, you will have the opportunity to meet with your State Senator and Representatives.

The Brain Injury Association of Massachusetts (BIA-MA) urges all brain injury professionals, survivors, caregivers and family members to come and testify in support of the bill.  This bill will ensure that commercial health insurance plans include of cognitive rehabilitation service for individuals with Acquired Brain Injury (ABI) or Traumatic Brain Injury (TBI).   Contact Kelly Buttiglieri at Kbuttiglieri@biama.org if you are planning to attend.

One Small Step for Man, One Giant Leap for TBI Survivors – Jeff Sebell

A   glorious  Sunday in September, September 27 to be exact, was marked by thousands of small steps and  rolls, made by hundreds of TBI survivors.

The occasion was the first annual Walk and  Roll for Brain Injury, put on by the Brain Injury Association of Massachusetts, on a track around a football field in Framingham, Massachusetts, a stone’s throw  from where the National Head Injury Foundation began.

For that lap or two or three, we were all in motion as one; united by the common language of Brain Injury. In fact, I would go so far as to say that it didn’t matter how we actually  made our way around that track; as we sang and walked that first lap, we were all floating on air.

There was an energy and a spirit that levitated us, almost as if we were hovercraft, gliding seamlessly around that 1/4  mile track. For those moments together, not one of us was disabled. We were all doing the best we  could with the tools we had, yelling, “This is who we are,” being proud of what we could do; as individuals and together, as a group.

In a way  we  were going back to our roots,  back to the beginning, as Marilyn Spivack eloquently reminded us.  She brought with her the same good-hearted spirit, energy and determination she brought when she founded the  NHIF, and made Brain Injury a national issue.

Being there with all my people – all the survivors – was moving and empowering, and struck by the spirit, I reminisced on how things had  been, way  back when. Back then, 35 years ago, I was the only one the NHIF had to call for peer support.

The newly opened office  was small but  busy. Marilyn  reminded me I was the first visitor in that first office.

Look at where we are now

As much as we feel the  need  now to educate other  people about TBI, at least Brain Injury is in our current vocabulary. Thirty five years ago we called it Head Injury, and it was  a new frontier in medicine that not  many  people were aware of.

Walking around this track with all these brave survivors also brought me back to my own  journey around a track, forty years ago.

Back then,  when I  was in the rehabilitation hospital, they would let me  go home on weekends so  I could spend the time with my family and get some understanding of what the transition to home  would be like. Although I was in a wheelchair in the hospital, they would send me home with a cane so I could learn how to walk.

“Although I was in a wheelchair in the hospital, they would send me home with a cane so I could learn how to walk.”

Learning to walk  was challenging, and I was discouraged  at the stop/start, uneven movement of my attempts. I came up with a theory: if I moved as though I was running, I would have some fluidity to what I was doing. That meant being in motion, pumping my arms  and constantly  moving forward. My thought was that being  fluid would allow my instincts to take over and stop me from thinking and analyzing every little thing I tried to do. Following my instincts would allow my natural balance to take over and take me where I wanted to go: I was sure of it.

My eight year old  brother and my father and  I went to the  high school track, where I ceremoniously threw down my cane and,  with my  head down and my arms chugging, I began  my lap.  I felt as though I was  running at breakneck speed, but in reality I was only taking baby steps.  I did finish, and only fell once.

The pieces that made the walk so special this year was that the lap was done not only with all my fellow survivors and their supporters/caregivers, but also  with my now eighty-five year old father, my brother, and my daughter.

We re-enacted that lap made forty years ago.

Lagging behind at first, my daughter and I watched and smiled as my father made  his  way around the track, walking fluidly and with purpose, just as all those survivors were doing. I got choked up several times, as I sensed the power and determination of all the survivors, and also thought back to my own family and how  far we had all come.

Brain Injury is  no longer an unknown issue.  On  many  levels it may still  be a mystery, but it is something we are all  facing head on, some of us because we have to, and others because it is the right thing to do.

We still face many challenges as we  work to educate and live our lives, but look where we are now: instead of traveling on a dirt road, all rutted and bumpy, the road  has been paved  and we are all on our way  working to live a fulfilled life.

About Jeff Sebell

A long-time survivor, Jeff  is the author of “Learning to Live with Yourself after Brain Injury.” You can read  more about Jeff and his journey on his blog at www.TBISurvivor.com.  This article was reproduced with permission from Jeff Sebell and TBI Hope & Inspiration.

Watch the New PBS Series Premiere of “THE BRAIN” Tonight!

Watch the New PBS Series Premiere of “THE BRAIN” with David Eagleman

Airs Wednesdays, Oct. 14 – Nov. 18, 2015 at 10 p.m. EST

The Brain Injury Association of Massachusetts (BIA-MA) is a proud sponsor of THE BRAIN WITH DAVID EAGLEMAN, hosted by Dr. David Eagleman, neuroscientist, New York Times best-selling author and a Guggenheim Fellow.  This six-part series exposes the inner workings of the brain and takes viewers on a visually spectacular journey into why they feel and think the things they do. THE BRAIN WITH DAVID EAGLEMAN will air on Wednesday nights at 10 p.m., beginning October 14 through November 18th, as part of the PBS “Think Wednesday” lineup of science and nature programming.

Click on the brain image above to view a trailer of this series