Tag Archives: caregiver

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.

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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.

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.

Anniversaries: To Celebrate or Not to Celebrate?

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Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor. 

On November 25th, 2010, it was a regular Thanksgiving.  We visited with our family and friends.  Isabella and I planned our Thanksgiving weekend.  We were so excited to have 4 days off and we couldn’t wait to decorate for Christmas.  My best friend lived next door so we stopped by before going to our home.  We arrived at 7pm.  By 7:10pm Isabella was screaming that her head hurt, her throat burned and seconds later the vomiting started.  I brought her home, cleaned her up and laid her down beside me.  By 10:35pm Isabella was confused, disoriented, dehydrated and she said “I just want to go home Mommy”- we were home.  I knew at that moment that something was not right.  I called her pediatrician and we were off to the emergency room.  I had to pull over several times to help her because she was vomiting so much.  We walked into the emergency room at 11:58pm.  I did not know that our lives were about to change forever.  That is how our journey began.

It was eventually figured out that Isabella had sudden acute encephalitis.  Words cannot express the horror that I saw happen to my baby.  I held her in my arms at one point and she was stiff as a board.  Her body was distorted, she made these awful sounds (that still haunt me) and I remember thinking, God she doesn’t deserve this.  I remember pleading to God that this is not how I wanted my baby to live.  I watched Isabella crash before my eyes.    There were tubes going everywhere, she was hooked up to 19 machines and a ventilator.  I was told that I needed to prepare myself that I probably wouldn’t be walking out the door with Isabella.  I was told that Isabella was gravely ill and I needed to understand she wasn’t going to make it.  I couldn’t even process what was happening.  There are sections of the first few days that I don’t even remember.  I want to remember them but I am told that it’s my brain blocking it out because it’s so traumatic.  It could also be that I didn’t sleep for 74 hours and I eventually collapsed outside the MRI.  How could I sleep knowing that I only had a precious few hours with Isabella?  I didn’t want to waste one single second sleeping.

The days went on and Isabella was still fighting.  Isabella eventually woke up and it was the happiest day of my entire life.  See the picture below.  I was told that Isabella is that one in a million to survive what she did.  Prayers, our special angels and a miracle saved my baby.  Little did I know that the next few weeks, months and years would never ever be the same.  We were now on a different journey, one that was unknown and at times scary.

Everything in our life is defined by that one day “before Isabella got sick” and “since Isabella got sick”.  It is that one moment where everything changed.  That first anniversary was a sad one.  It was hard reliving every single moment over again.  Isabella and I snuggled, watched movies and played.  I decided that I would allow myself that first year to be sad.  After that I couldn’t anymore.  I decided that instead we would celebrate Isabella.  Isabella knows that she has a “boo-boo” in her brain.  I have been very honest (in an age/cognitively appropriate way) about what has happened.

As the second year approached I planned “Celebrate Isabella Day”.  She quickly changed the name to “Mommy and Isabella Day”.  I asked her therapists, providers and others that love her to send her a card (to be opened on 11/25) with well wishes and words of encouragement.  Isabella and I planned the day out.  Crafts, movies, snuggling, make a cake and have balloons with party hats.  Anyone that knows Isabella knows how important party hats are to her.  We sang “Happy Mommy and Isabella Day” and we made wishes on the candles.  We also opened the cards that were sent.  Isabella looks forward to this day every year now.

You are probably wondering what most people do, why celebrate such an awful day?  I choose to celebrate this day because I have to.  This day forever changed our lives.  Instead of looking at it as the day I lost my old Isabella, I choose to look at it as the day my Isabella was born again.  She is a miracle and she amazes me every day.  Isabella is my hero and I want to celebrate all that she has accomplished.  After all this was a child who wasn’t supposed to make it through the night never mind reach 3 years post Acquired Brain Injury (ABI).  When I look back on the last three years, we have had many highs and lows.  Isabella’s strength, bravery, determination, courage and fight have gotten us through this.  I don’t want to mourn who she was and what was lost, I want to celebrate the amazing person she is.

With each anniversary we have the power to choose how that day will be remembered.  We can long for what once was and be filled with sadness or we can chose to celebrate the survivor that is here with us.  I chose to celebrate my amazing survivor Isabella.  Happy Mommy and Isabella Day!

“Nobody said it would be easy they just promised it would be worth it” Anonymous

Mommy of a Miracle: “You are not Alone”

Kristin Olliney

Kristin Olliney

Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor. 

“To the memory of Giovanni (Gio) Cipriano”

When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries.  Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents.  I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury.  I needed that connection with other parents who could relate to having a child with a brain injury.  Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next.  At one point we all had a neurologically typical child, some of us longer than others.

I wanted to find an online support group.  I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home.  In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting.  I wanted a safe, non-judgmental place to go to at any given moment.  Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc.  While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.

When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.”   I had hoped to have at least a few parents join.  One-by-one as parents joined, I realized that I was no longer alone and neither were they.  We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury.  We all belong to that “club” that we never asked for or imagined we would belong to.  That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.”  Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred.  We are all at different places on this journey.  Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time.  “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.

Having a child with a brain injury has changed us all.  Our children are now faced with a very different life as are we.  Some of our survivors are being bullied because of those differences.  We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside.  We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury.  We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends.  We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies.  We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.

Two weeks ago, we had our first loss.  A new member joined and she had a child struggling to survive a brain injury.  Unfortunately that child did not make it.  Words cannot express the sadness that was felt.  I have never met this mother nor her child, and yet my heart ached just the same.  After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive.  The reality is that every five minutes someone dies from a brain injury.  That someone has a parent somewhere.

What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver.  I may never meet these amazing parents but I can’t imagine my life without them.  This group and our members have had such a profound impact on me.  I can’t express how much these parents have changed my life.  If you haven’t found a brain injury support group, I highly recommend it.  When you find the right one, you might wonder how you ever survived without them.

To locate a support group in Massachusetts, visit http://www.biama.org/groups.html and click on BIA-MA Support Group Listing. Or, click here.

Get ready for BIA-MA’s 4th Caregiver Conference on November 2nd!

The 2010 Caregiver Conference

The Brain Injury Association of Massachusetts is hosting its 4th Caregiver Conference on Saturday November 2nd at The Canal Club, Trowbridge Tavern, 100 Trowbridge Road in Bourne, Mass. Boston Medical Center HealthNet Plan is the Headliner sponsor for the event and exhibitors from several organizations will be available with a variety of services geared toward the caregiver.

This conference is the only conference just for caregivers–designed to give support, advice and practical information to caregivers facing the many challenges of meeting the needs of those with brain injury. BIA-MA’s first Caregiver Conference, held on Cape Cod by BIA-MA’s Southeastern Regional office, was the inspiration of Donna Edson, mother of Robert Jordan, a survivor of brain injury who passed away in January 2008. Without the generous donations in Robert Jordan’s memory, the first conference would not have been possible. Since its inception, the conference has more than tripled the number of participants, attracting families and caregivers from across Massachusetts.

From 9:00 a.m. to 2:30 p.m., conference attendees will learn about survivor care and services, caregiver care and services as well as managing unwanted behavior. Here is our list of esteemed speakers:

Managing Unwanted Behavior

  • Tom Hall, Associate Division Director for Clinical Services at Riverside Community Care, has worked for more than 25 years with individuals recovering from brain injury. He is a Certified Brain Injury Specialist Trainer (CBIST).

Brain Injury Survivor Care and Services

  • Kenneth J. Smith, Director, Office of Long Term Services and Supports, Executive Office of Elder Affairs and MassHealth, Executive Office of Health and Human Services
  • Myles Marisseau, Information and Resources Senior Operations Manager, Brain Injury Association of Massachusetts
  • Marilyn P. Spivack, Founder, Brain Injury Association of America, parent of a brain injury survivor, and the mother of brain injury advocacy
  • Matt Dorian, Research Fellow, Spaulding Rehabilitation Hospital, TBI Model Systems
  • Juliane Soprano, Attorney, The Law Offices of Juliane Soprano. Juliane specializes in Worker’s Compensation and Social Security Disability Representation. She was named one of Best Lawyers® for the past four years.
  • Robert Ferris, Massachusetts Rehabilitation Commission and the Brain Injury & Statewide Specialized Community Services (formerly SHIP)

Caregiver Care and Services

  • Marie Bantram, Owner, All 4 Healing Wellness Center, Sagamore Beach
  • Adam Liss, Owner, Cape Stress Reduction & Optimal Health, Marstons Mills

Breakfast will be provided from the generous sponsorship of Fairlawn Rehabilitation Hospital in Worcester. Lunch will also be provided. If you need special accommodations, please submit them no later than October 15th. You can indicate this on the registration form.

If you are a caregiver and you would like to attend the conference, it is $10 for one person, $20 for two people, and $25 for 3 or more (family). Click here to get all the details. If you’ve learned all you need to know and want to register right away, click here and submit your online registration form.  The registration deadline is October 29th. If you are a caregiver for a brain injury survivor, this conference is just for you, and you will finish the day with relaxation and stress relief. Take advantage of a conference designed just for you.

Mommy of a Miracle: It takes a team to recover

kristin

Today’s blog post is part of a 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 the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website. To contact Kristin, tweet @KristinOlliney.

Isabella’s journey post acquired brain injury (ABI) has been one filled with twists, turns and bumps along the way.  Having a team that stands by Isabella and I has been invaluable.  I have learned that it takes a variety of people all having the same vision to help move forward in recovery.  Every member of our team (both past and present) has taught me something. Trust is essential and everyone has to have the same vision. Isabella has so much fight and determination. I want a team that is willing to keep pushing her forward. 042

When Isabella first got sick with sudden acute encephalitis, we had a team that was given to us. We didn’t have the option to choose – it was whoever was in the PICU, relevant specialties and rehab.  As we progressed forward in recovery, I started to learn about the team approach. That first year of recovery, I felt like I was being asked to settle for Isabella.  She was over medicated, having difficulty walking and struggling to talk. I was told that this could be as good as it gets and that I needed to accept that. I refused to settle because I knew she could go further with the right team. I researched doctors, hospitals and therapists. I sought out second opinions, I met with rehab facilities and I talked with everyone about my vision for Isabella. I slowly was able to transition her care over to our existing team.

Our team consists of:

  1. 1.       A medical team, including a pediatrician, neurologist and immunologist.  I initially met with our neurologist for a second opinion. I was not looking for a miracle cure because let’s face it, there isn’t one.  However, I knew the life Isabella had of being over medicated, seizure-filled and out of control was not the life she deserved. The neurologist was able to help get Isabella back on track by taking a more conservative approach to medication and listening to what I saw for Isabella.  She was able to help me find an appropriate pediatrician, one that works with complex children like Isabella and referred me to an immunologist who has taken a proactive approach with her. These three members of Isabella’s team are key in keeping her medically stable.
  2. 2.       A therapy team, which consists of a physical therapist, occupational therapist and speech therapist. We have had many therapists and it takes a variety of them to keep Isabella moving forward.  Isabella initially woke up out of her coma unable to even lift her head never mind move her arms and legs.  Isabella could only put two to three words together and she was unable to even hold a crayon. Today, Isabella runs, hops, jumps and even rides a bike.  She has become a lot more verbal and puts together much longer sentences. She also gets herself dressed on most days and is great at drawing. It takes a lot of work in therapy and at home to ensure that she not only continues to gain new skills, but that she retains them as well.
  3. 3.       Our behavioral team, which consists of a behavior consultant and behavior monitor. They were able to help me help Isabella. When they first started, Isabella couldn’t even go outside without a panic attack and she was violent. I was at the end of my rope with what to do because nothing was working. Isabella has no control over her mood, behavior, emotions, etc., so the behavioral team helped me learn all the ways to help her before she escalates.  When Isabella loses control, there isn’t much I can do. However, we have put many tools in place to help us both.  Mine and Isabella’s relationship is so much stronger due to the work we have all put in.
  4. 4.       Our dog therapy team consists of an amazing woman and her little dog Charlie. They just recently moved away, but before that they came to visit every week.  In those visits, there was no brain injury. Isabella was just a little girl who loved “her” Charlie.  They helped Isabella learn how to be gentle, have empathy and Charlie helped Isabella through some tough times, including hospital stays.
  5. 5.       Our educational team consists of a fantastic special education attorney who is helping me navigate the school system. I know what Isabella needs and she knows the law. Together we are working on getting Isabella transitioned to school for the fall. It was important to have an advocate who was willing to help think outside the box because Isabella is so complex.  I am hopeful that together we can get Isabella the appropriate education.

In addition to these team members, we also have the many nurses who help Isabella get through hyperbaric oxygen therapy (HBOT) and child life specialists who help with infusions.  Isabella gets infusions every other week because she also has an immune deficiency. Every team member plays an important role in Isabella’s recovery whether it is keeping her medically stable, moving forward in recovery, getting the appropriate education or being able to get through medical procedures. To get the team we have I had to change doctors, therapists and hospitals. Change is scary, but it is necessary to keep moving forward. I have made major changes in Isabella’s care. These changes have made the difference between her recovery moving forward and standing still.