Two Girls with Hemiplegia Meet at the Brookfield Zoo CHASA Pediatric Stroke Awareness Tree at the Brookfield Zoo December 2012 … [Read more...]
A Sister and a Brother and Disability – Film by Jennifer Siegel
September 24, 2012 By
As the parent of a child who has a disability, I don't know that words can describe the feelings that overwhelmed me as I watched this beautiful film created by Jennifer Siegel. Jennifer produced this short film for the Cinema Touching Disability Film Festival and in it, her parents and her brother Joshua share his story. Joshua has cerebral palsy, but that's not what this film is about. His life is much bigger than CP. … [Read more...]
Holly Escapes from Her Constraint Therapy Cast
August 10, 2012 By
My daughter, Holly, is a sweet 5-year old girl with a number of diagnoses - Left-Sided Hemiplegia, Cerebral Palsy, Epilepsy, PDD-NOS, Developmental Delays, Behavior and Sensory Issues. One day each month, we go to St. Louis Children's Hospital for all of Holly's medical appointments. Our day begins with Physical Therapy. Holly has fun about 70% of the time. There is so much there that she has a hard time staying focused. If she sees something she that looks like it is more fun, then she is off and racing to it. We normally go to lunch and enjoy relaxing while we watch the fish. Then its off to Occupational Therapy. In April, Holly received a bi-valve cast so we could begin doing some constraint therapy at home. I warned the therapist that Holly is VERY good at getting out of any arm/hand device. In the photo, you can see the variety of braces and hand splints Holly has worn in the past. Once she got strong enough the soft hand splints started getting lost. One-by-one they … [Read more...]
Baby Steps: Infant with Hemiplegia after Strokes Tackles Walking
July 31, 2012 By
By Joy Roberts At 28 weeks of pregnancy, my baby girl, Lily (nicknamed Lily Pad) had several strokes in the linings of her brain called Intraventricular Hemorrhages (IVH). Approximately five blood clots resulted because of the bleeding which resulted in loss of brain tissue and were blocked the flow of cerebral spinal fluid (CSF). She developed acquired hydrocephalus because of the blockages. Initially, my husband and I were told that, the prognosis was death or severe disabilities and we should consider abortion. Fortunately, we met a wonderful neurologist at Duke University Medical Center who offered Lily hope. He explained the amazing developmental power of the infant brain and that these strokes and hydrocephalus did not necessarily mean Lily would not recover. He could offer no promises as to her prognosis, but he did say that her suffering and death were not eminent. After much prayer, my husband and I decided to go through with the pregnancy, confident … [Read more...]
Gabi is Riding Again
June 19, 2012 By
On January 24th, 2011, Gabi grabbed her head and stumbled to the ground and started to go unresponsive. Fifteen hours later, at midnight in the PICU, we found out that Gabi had had a stroke. It was sudden to say the least! Two days after her stroke she had increased swelling to her brain and required emergency surgery to remove part of her skull to allow for her swelling brain to expand. Since Gabi's stroke, we have moved to a new state due to my husband's job and our life and world as we know it have changed...but change is good. Initially Gabi was unable to control her head, neck, trunk, etc and she also had no use of her right side. She also had a hard time speaking and could not remember most of the cognitive things that she had learned so long before. Through therapy, initially PT, OT and Speech and now PT and OT, she has overcame so much! She walked out of the inpatient rehab hospital with the ability to find her words. To this day she is starting to use her right shoulder and … [Read more...]
16 Years Later – A Story of Hope
May 22, 2012 By
Braden Kara was born by C-section after a long non productive labor. Her apgar scores were both 9 and looking back, the only indication that something may not have been "normal" was a lazy looking left eye. We started to notice that at about 4-5 months old that she wasn't grabbing for things with her left hand, or crossing mid-line to her left side. When she was just starting to sit up with support on her back she would always fall to the left. If you talked to her she would look at you with a head tilt and turn her head to the left also. I didn't mention these things to the doctor because I didn't want him to say, "Oh, it's developmental or you are a first time mom and just keep an eye on her." My mother in law, who is a physical therapy assistant, came over one Sunday and I shared some of this same information with her. I noticed she ran her fingernail up Braden's foot and then didn't say anything more. The very next day, she came over and gave us information about … [Read more...]
Pediatric Stroke Awareness 2012 Montage
May 18, 2012 By
Our Baby Had a Stroke This picture was taken less than two months after Christopher (in photo - far left) had his MRI which revealed that he had suffered a stroke in utero. The neurologist called us after hours and I remember feeling half paralyzed myself just listening to the words come out of her mouth. My husband and I both cried for hours that night. We kept going over all the different scenarios of how, why, and what does this mean for our precious little boy's future? We had so many questions and nobody had answers. Searching for Answers After learning of his stroke, we spent nearly a year alone in this journey that had only just begun. I spent many nights searching the internet just to find some support, someone to connect with who could truly relate to all the therapies, the unknowns, and all the emotions that were piling up. It wasn't until I looked up the diagnosis code on Christopher's AFO script that I realized his diagnosis was actually "hemiplegia." Up until that … [Read more...]
Watching and Waiting
May 14, 2012 By
James didn't come into this world screaming; he came into it blue, breathless and almost lifeless following a complete placental abruption. Five days later we found out that his little brain had been spared damage from the loss of oxygen, but that the MRI showed multiple ischemic infarctions -- strokes -- from the abruption. The largest was in the left parietal lobe and we were warned he could have difficulties using his right hand, could walk with a limp, could have language or learning disabilities, and could develop seizures. Knowing all of this was both a blessing and a curse, as we watched him obsessively to see which odds he would beat and what other surprises might be lurking. When James was 4 months old, we stopped watching and started therapy: PT, osteopathy, massage, early intervention. It was still too early to know what it all meant, but we were seeing those red flags they warned us of: holding his hand in a fist, mixed tone, not reaching against gravity with the right … [Read more...]
Brody Had a Stroke Before He was Born – He’s a survivor!
May 4, 2012 By
Our son, Brody, had a stroke before he was born. This is often called an in-utero stroke or a perinatal stroke. We're sharing our story to encourage other families and increase awareness of pediatric stroke. We're also running for the entire month of May and asking friends and family to make donations to CHASA in honor of Brody. - The Watts Family Challenges and Therapy Brody did not roll over until he was 10 months old. He laid like a lump on a log while his twin sister practically ran circles around him. It was hard, as parents, to watch & be happy with her progressing development and realize how fast he was falling behind. Throughout therapy we've worked on pulling to stand, standing alone, walking, jumping, stretching-stretching-and-more-stretching of his left arm/elbow/shoulder and right leg/ankle/toes. He wore braces on his feet from one to two years of age to help him learn to walk and we spent many many evenings outside with him dragging his feet along our sidewalks with … [Read more...]
Evans Loves to Swing – And She’s a Pediatric Stroke Survivor
April 30, 2012 By
Evans was born a happy (and we thought) healthy little girl. When Evans was 5 months old we discovered she had very limited use of her right side and immediately looked for answers. The pediatrician informed us that our daughter may have cerebral palsy and advised us to take her for testing and a CAT scan. We were shocked to learn our only daughter at 5 1/2 months old had suffered a massive stroke either in utero or shortly after birth occurring in the left middle cerebral artery of her brain (which controls the right side of your body). Our daughter was diagnosed with right hemiparesis or hemiplegic cerebral palsy (partial paralysis on her right side) . Evans is now 2 1/2 and loves to swing, sing, watch barney and Minnie mouse and play with her three brothers......a perfectly typical and very intelligent 2 year old. Although she has some speech and coginitive delays, she works daily to conquer them through her hard work and dedication. Learning to walk at 18 months with the use of … [Read more...]
