What is Shaken Baby Syndrome?

Each year in the United States alone, medical treatment is sought for an estimated 1,400-1,600 babies who have been shaken. Don’t let your child become just another statistic! Tell everyone who cares for your child “Never shake a baby!”

Wednesday, October 28, 2009

Blog from Trevors mom

Hey guys I just wanted to let ya'll know that I went and saw Trevor this weekend (no news on the big C scare yet) and he was sooo funny. Taylor and I went tio the nusing home to visit and she lookeds at his finger and toe nails and thought that he needed some grooming. I had her go and get some nail clippers from the nurses station. Well I woke him up. Don't you know ... he rolled his eyes at me. Hump the nerve of me I woke him up. Well sorry Trev, Mommy is here to visit let me see the eyes. Well I went and started to cut the finger nails and got to the last finger where he had the pulsox tape on and ok I needed his nail so I untaped it, don't you know bells and whistles ... 2/3 nurses come running in. I told them just cutting his nails so they leftme alone and let it go. Don't you know that it took me 45 minutes to get the darn little thing to start reading right again since his fingers are so darn cold and skinny. CRAZY. I couldn't even tell you how many times I had Taylor hit the mute button. Well it was feet time. I went and pushed his pillow shoes back and his little legs just went flailing, (must have been ticklish), I joking told Taylor to sit on Trev so that I could get his toes done and she said "no mom, his brains is already scrambled up." I didn't want to get mad at her or cry so I let it go and told her no and said "No, on his legs" she said "I will break his legs", "but hsi one leg is all metal he will be all good." we both had a chuckle and she went and brushed his crazy hair while I continued to work. She looked at his nails adn said, "they're alive run for your life befiore they eat us." It was a laugh riot. His toesnails were really yucky and he does need to see a podiatrist but anyway. he just kept back moving his foot. I showed Taylor that he had tickley feet. .... So to the end of the visit. (The really funny part) We went to leave and I went to tell him bye and give him a kiss and he gave me a grone like a growl, then Taylor kissed him and nothing, she kissed him again, and nothing again, then she gave him a big time kissey face barrage a kisses and still nothing. that does it. My son growls at me and does nothing to his sister. Well I giess no matter how handicapped kids may be. They still give their parents an attitude when they become a teenager. AAAAAHHHH! thought you would like to hear an uplifting story. It was a laugh riot to my therapist this morning. But I thought mom's of survivors would really get a kick out of it.

Lots of love.
Trevor's mom
Abigail Cameron

Monday, October 26, 2009


On Friday, my daughter underwent a procedure of Botox injections to help with the rigidness she has in some of her muscles as a result of her brain injury. The hope is that the Botox will help to numb some of the muscles causing the tightness, which will give Riley more use of her limbs. Long- term thought is that the brain will create new “pathways” relating to the muscles in a comfortable state, so she can be weaned off the Botox- retraining the brain to send messages to tell the muscles to stay relaxed …

I always have so many ideas about what to write for this blog- looking back, we’ve been through so much these past few years, I could write about every feeling and experience to exhaustion. I chose to share this information about Riley because this seemingly simple appointment brought me through so many emotions. This was the first procedure Riley has endured since she left the hospital two- years ago. It was very difficult for me to bring her back into a hospital, to put that gown on her, and to watch them wheel her away from me and into the operating room. I knew that this procedure wasn’t invasive at all, that they were only using the anesthesia to make Riley comfortable since she was receiving so many injections. There was no IV, no breathing tube. All logic aside, as much as I told myself it would be OK, it was still hard. I found the time moved extremely slowly during her only ½ hour procedure, and I kept watching the clock…

Riley’s procedure went well, and she recovered better then expected. She has been a trooper through this entire ordeal, and this time was no different. I tell myself that at her next appointment 4 months down the road that I will feel differently- it won’t be a big deal, that she will be fine. However, realistically I know that the moment we arrive at the hospital, I will feel the same way I did on Friday. And I think that’s OK. It’s the result of my experiences, and those cannot be changed. I love my daughter and will continue to be strong for her despite my own emotions. I must learn to embrace the fear because it is now a part of me…


Tuesday, October 20, 2009

Turning negative into positive

So as many of you know it has been 10 years since my son was assaulted. I have been thru many many different stages. And I go back and forth between the good stages and the bad stages.

It is very challenging to try and stay positive and not let the negative affect our lives.

Sometimes I get down in a slump, but eventually I do climb out of the slump and try to do what I can to be positive and to try and make an impact for the cause, and for our children.

What is it that keeps you positive, and looking forward to the days ahead?

Love to all


Monday, October 19, 2009

The Lonely Road

About a year ago, my good friend Kate was visiting from Chicago, and we were talking about Facebook. She had just started using it, but I wasn't sold, I had mixed feelings about it. While Riley was in the hospital, some friends had put together a website for us to use for the purpose of updating her progress and keeping everyone informed. The site started encountering problems, and eventually we stopped using it. People were still interested in Riley's recovery, so I decided to try Facebook, which would hopefully do the same thing. Coincidentally, it was at that time that one of Riley's former Early Intervention Teachers sent me an article about the Sarah Jane Brain Project. I was intrigued, and researched it on-line. I also searched and found information about the Foundation on Facebook, but I also gained so much more...

Two years into Riley's recovery, we were very alone. Don't get me wrong, we have a wonderful support system of family and friends, therapists, doctors, teachers, etc...but not one of them truly understood what we were going through. Everyone was so supportive and encouraging, but this was not happening to their child- it was our child. There was not one other child in the hospital suffering from SBS (thankfully) while Riley was there, and there were certainly no SBS support groups for parents available to us. It was a very lonely road...

I am so grateful to have found such a wonderful group of SBS parents through Facebook, and through the SBS Support Network. I have now connected with others who truly understand what we are going through. We share stories of our miracles and angels, cry for our losses, and rejoice over every triumph. Brad and I are no longer alone. We are understood. I hope that other SBS familes are lucky enough to stumble upon this blog. I share my daughter's story and write with the hope of helping someone else to avoid the loneliness...someone just like me.

Monday, October 12, 2009

Being thankful

Some days its hard to see the sunshine thru the clouds

Some days its hard to get out of bed

Some days are good, happy and bright

How do you handle the stresses, the hardship, the happiness?

What gets you through the hard times, and what makes the happy times even better?

Sometimes its hard to be thankful for everyone, for a family that has been thru such a traumatic time....how do you stay positive?

For me when I have my hardest moments, all I have to do to keep going, keep looking up, is to think of my special boy that beat the odds. And that I have to be strong for him.

No matter what happens in your life, I hope that you will continue to look for the silver lining, and be thankful for this day, the sun, the air.

Love to all


Meet Lisa and her little miracle, Riley

We would like to welcome Lisa, mother to Riley, whom suffered Traumatic Brain Injury at the age of 2. Lisa thank you for becoming a part of this blog team. :)

My daughter was a healthy, happy, energetic, beautiful, social, and bright child. She was just over 2- years- old, and was hitting all of her milestones early. There were so many things Riley enjoyed doing- dancing, swimming, coloring, playing with her stickers and play doh (i.e. her “colors”) with daddy. Riley loved her “guys” (little figurines she carried everywhere with her) and her Disney shows and movies. Riley loved to look at books, and could tell me what every picture was. She loved playing with other kids. She had even learned counting in Spanish and some sign language. She loved being outdoors, going for walks, and going to the park to play on the swings and slides. Riley was honestly the model child, I couldn’t have asked for a more perfect little girl.

On March 27, 2007 our lives were changed forever at the hands of our day care provider, and family friend. The day started out as any other- we awoke in the morning, got ourselves ready, said our goodbyes, exchanged our kisses and “I love you’s” with Riley’s dad, and left on our way to the babysitter’s home. Before I left that day, I said goodbye and I love you to my little angel and gave her a kiss, as I always did. She was all smiles, in her new purple Gap velour sweatsuit holding on to her yellow sippee cup filled with milk, playing with one of her friends- I’ll never forget that vision, because I will never see my little girl in the same way again.

At about 12:20 PM, I received a phone call from our babysitter stating that something was wrong with my daughter, that she had been put down for a nap, and she wouldn’t wake up. My stomach dropped. I asked if she had called 9-1-1- she had not. I instructed her to do so and I immediately gathered my things and ran out of the building.

Riley was air lifted to Albany Medical Center that afternoon. It was in the ER that we learned Riley had suffered a traumatic brain injury- we were in shock. She was fine when we dropped her off. They informed us that she needed to be rushed into surgery to save her life, and we immediately gave permission to do so without another thought, anything to save our little girl.

The first of many miracles to come over the next year, Riley had made it through surgery- but she was not expected to survive much longer- her chances were slim. If she did survive, there was no way of knowing how she would be, but most likely, she would never be the same child again. The neurosurgeon explained the severity of her head injury and prepared us for the worst- we hoped for the best. We just wanted her to survive. Riley would be fighting for her life over the next few days.

We were living every parent’s worst nightmare. Riley was hooked up to a respirator, her little chest jerking up and down in an unnatural way. She had tubes coming out of her nose, mouth, chest and arms. She had bandages around her head where there were endless staples from her surgery- they had removed her left bone plate to allow her brain to swell, and they had shaved half of her hair off. There were monitors next to her bed that showed her heart rate, blood pressure, respiratory rates, and the amount of pressure in her head- the numbers appeared to be constantly changing. There were two poles behind her bed filled with medication delivery devices, at least 5 on each. She had two nurses assigned just to her, sitting right outside her door at all times, monitoring her care. Her little face was so swollen, her eyes were bruised and swelled shut and there was dried blood on her face. I couldn’t do anything other than stand there helplessly, hold her hand, pray and cry. We didn’t speak because the doctors said that she would try to hear us and it would strain her too much to try and focus on anything- they wanted her to rest. The room was dark and quiet except for the beeping of all those machines and the noise of the respirator.

During the next 3 months in the PICU, Riley defied the odds and was so strong, she endured more then any child should have to. Her heart stopped beating and she coded twice while I stood by and watched helplessly as doctors worked to revive my daughter- pumping her chest, injecting her with drugs, shocking her little heart. The second time in May of 2007, they had to put her back on the ventilator to help her breathe – at that time they also found a blood clot and spent over a week trying different drugs to regulate her heart rate and blood pressure. She faced surgeries to clean an infection from her brain, to replace her skull plate, to clean up her incision from the initial operation, to have a ventricle drain put in, to have a permanent shunt placed, to insert a feeding tube in her stomach (she had this surgery twice and went to the ER three times to have it corrected), she faced multiple infections in her blood and in her cranial fluid and spent over a month on antibiotics, she spiked high fevers, suffered morphine withdrawal (twice), had tremors so severe they prevented her from sleeping, she was also placed on methadone to help with drug withdrawal. I’ve lost count of the number of CT Scans, EEG’s, MRI’s and other medical procedures and tests Riley has had to suffer through. I stayed at the hospital with Riley the entire time, I couldn’t bring myself to leave her side, I was terrified that I was going to lose my daughter.

After leaving the PICU in June of 2007, Riley was finally transferred to a rehabilitation hospital. The first two weeks Riley didn’t do much other than cry both in and out of therapy. There was nothing we could do to soothe her. She was able to get some physical, occupational, speech and recreational therapy but it was very stressful and exhausting for everyone. She couldn’t eat any solid foods, and wouldn’t open her mouth for months. Riley was unable to hold her head up after so many months lying in bed and had no control of her neck or torso. She would drool all the time because she couldn’t swallow properly. She had a condition known as “drop foot” from lying down. Her hands also needed braces and were often stuck in a fist-like position. She would often “tone” which is when she would hold her whole body rigid and then cry. It was difficult to break her of this, and she still does it occasionally, even on medication to control it.

On top of all of Riley’s medical issues, my husband and I were considered suspects of this brutal crime, and were pulled from Riley’s bedside on countless occasions to be questioned and to make statements to police officers, social workers, attorneys, and Child Protective Service workers. We were forced to leave our daughter and endure reliving the most horrible experience of our lives over and over again, even on the stand at Grand Jury, Family Court, and finally, over a year later, at the Criminal Trial. Everything in our lives was put under a microscope- our parenting skills and style, our decisions, our family and friends, our pets, our love and care for our daughter. My husband and I eventually had to come to terms with the realization that our friend had in fact hurt our daughter. We’ve had to live with the guilt of leaving our daughter with someone we thought we trusted unconditionally, someone we loved, and someone we considered a friend. We went to trial in April 2008. Riley’s attacker was found guilty and sentenced to 18 years in state prison for the assault.

In over two years Riley hasn’t walked, fed herself, or sat up without assistance. She is finally able to say “hi” and “on”. She is legally blind and will face that challenge for the rest of her life. She must take seizure medication and muscle relaxers on a daily basis. She still cannot fully hold her head up for long periods of time, and she still needs to be held or be in a special chair or standing frame that holds her up. Riley is steadily making progress with her eating, and luckily the feeding tube is gone. We have purchased countless sets of braces for Riley’s legs, two special chairs for her to sit in, a special car seat, hand splints, endless medications, glasses and vision therapy. Riley has recently started potty training. She attends an integrated preschool program where she gets physical, occupational, speech, assistive technology and vision therapy. She has a one-on-one aide to assist her in every activity at pre-school. She still attends therapy at the hospital once per week to work on her walking, and is also enrolled in hippotherapy (horseback riding) and swim class. She has faced numerous dental appointments to correct oral issues sustained from months of breathing tubes and her tonic bite, by not allowing us to properly care for her teeth. Riley will have Botox treatments next month to help loosen some of her muscles.

Riley’s future is so uncertain, as is the nature of a traumatic brain injury. Every case is different. The brain controls everything, and the healing process is very slow. She faces years and years of continued therapy. My husband and I remain optimistic, because we love our daughter and refuse to believe that this is the way she will be forever. We want our daughter back. We will continue to provide Riley with everything she needs to work toward recovery, no matter what that entails. Every small accomplishment is huge for us. Her smile and laugh gets closer to the one we remember, a simple function that took Riley almost 8 months to gain back. We continue to hope. Riley has proven to be stronger then any other person I know, even at the age of 4. She is my inspiration. The doctors have prepared us for the worst case scenario- that Riley will stop improving, and that she will require assistance with everything for the remainder of her life. My husband and I realize that this may be Riley’s reality, but we choose to take each day as it comes, to be grateful that our daughter is still alive and with us, and to provide her with all of the love and support she deserves on this journey. We will deal with each issue as it comes and are still trying to pick up the pieces, focus on the future, and move on.

Saturday, October 10, 2009

We are family….. We are SBS family!

So I was sitting here thinking what should my blog today be about.

The last few days my thoughts have been with some of our SBS family. We all face challenging times, hard times, good times. All of us continue to fight against SBS and spread the word about the dangers of shaking a baby. We all go thru periods of more challenging and trying times.

We continue to speak out, to fight hard, and sometimes to pull back and take time to step back and take care our ourselves and our families. Then when we can, we step back out again and continue the fight that never comes to an end.

I guess I just wanted to say in my blog, that WE ARE FAMILY! We are here for each other, we are here for support, for crying, for anger, for understanding.

No matter what you may be facing on your own personal journey with shaken baby syndrome, whether it is an “up” time or a “down” time, we all go thru different phases, we all go thru a wide range of feelings and emotions.

A word of encouragement to all of you. Hang in there, be strong, lean on each other when you need, speak out when you can, be silent when you need to. And TAKE CARE OF YOU!

We are all passionate about Shaken Baby Syndrome, and want to see an end to this horrible crime! But take time to take care of you, so that you can do what you want to do in your journey. And most importantly, reach out if you need one of the SBS family, we are here.

All my love

~ Tara

Friday, October 9, 2009

Hello! From Mandy ~

Hey there everyone! I know it has been a little while since I last blogged. I apologize for my absence. This time of year is always a tough one as the anniversary of the day my little girl became an angel is right around the corner. As every Fall approaches we all see the beautiful leaves changing colors and falling off the trees. The summer heat slowly starts to fade away and we find ourselves wrapped up in blankets and coats. Each year we get our pumpkins together and we get busy baking in the kitchen. I live each day of my life with deep pain inside my heart that no matter what I do will never go away. I have this pain all the time, but everything about fall reminds me of all the horrible things that happened to my little girl. Each year I have taken this challenge just as I have with every other one. It’s never easy, but I manage to get through it.

OF course this year is the same thing with the exception that I have been faced with a new challenge. I now have a baby boy that l must continue to put a smile on my face and no matter how bad I am hurting stay positive and happy for him. I want to keep my blogging as positive as possible as this is a place for ALL of us to come for support. With the circumstances arising in my life I feel that is best for me to just take a step back right now. I will be back once I get through this and I will share with you my experiences through this part of the journey.

All my Love


Wednesday, October 7, 2009


I know some of you probably have these moments too. The come and go, and I havent really had them for years. I dont know if they are coming out now because there is other drama going on in my life, but the last few nights I have had nightmares of Kyle's assault. They are very detailed and I can see the faces so clearly. Which at least for me is not very normal. The are very upsetting, I hate having them. It has been 10 years since Kyle was assaulted. Why am I having these nightmares now. The child abuser could get out on parole next year... perhaps that is on the forfront of my mind, maybe its the challenges with stresses in life that is bringing them on. I dont know.... I just wish they would go away. I have woke up screaming the last few nights. It is a horrible feeling.

Does anyone else experience these nightmares of bad dreams?

~ Tara

Tuesday, October 6, 2009

SBS In the News - Oklahoma

KOKH FOX 25 :: Top Stories

Shared via AddThis

Hope for the future

I have many hopes for the future. For one day my son to be able to live a life where he is happy, and successful, however he determines that will be. The doctors have told me, that he will never be " a rocket scientist" but that we will teach him life skills so he can live on his own and have a productive life.

We will never know what Kyle could have or would have been, but he will be the best he can be, and we will be very happy that he is just even with us.

I hope he makes some friends, and we hope that he will find good people for his life as he grows, people that love him for who he is and are true friends.

I also have very high hopes for the future regarding Shaken Baby Syndrome. I hope that thru the work of many many dedicated people and organizations, that we see a decline in the number of babies that are killed or injured.

I hope to someday not hear a heart wretching story about another family that has to be on this journey. I know SBS will always exist, I only hope that we hear more about education and prevention and less about it happening to our babies.

~ Tara

Saturday, October 3, 2009

A Poem to Share...

Shared by Lyndsay Goodwin - mommy to Zach, SBS survivor

Remember that he is,first of all,my child.

Let me see him smiling in his sleep and let me think about how handsome he is and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations
I know that you care for my child and that you work hard with him.

I need your expertise to help him become all that he is capable of being.

You need my help in understanding who he really is and in following though at home with things that are important.

Remember,though that you send him home at night and have weekends off and paid vacations.

Let me have the luxury of having a vacation,sometimes physically, sometimes just emotionally,for a day,a week,a month,without your judging me.

I will be there for him when you are long gone.

I love my child with intensity that you can only imagine.

If on a given day I am tired or cross with him,listen to me,lighten my burden,but do not judge me.

Celebrate with me,rejoice in who he is and who he will become but forgive me if from time to time I shed a tear for who he might have been.