May is Pediatric Stroke Awareness month! And in honor of Charlie's continued recovery, we encourage you to visit the CHASA website to learn more about pediatric stroke. The Children’s Hemiplegia and Stroke Association, CHASA, is a nonprofit organization founded by parents of children with hemiplegia in 1996 to provide information and support to families of children who have hemiplegia, hemiparesis, or hemiplegic cerebral palsy.
As for Charlie, he is making amazing strides this month. He is starting to sit unassisted for more than a minute at a time, is using the sign for "up" to communicate with his family and therapists, is giving high fives and is just starting to drink from a cup. These are all huge milestones for Charlie and we're all encouraged and thrilled by his progress. Please share Charlie's story with friends and family in honor of Pediatric Stroke Awareness month. As always, thank you for your amazing support of the Greenman Family!
As most of you know, Charlie is one of the 2012 beneficiaries of Kenna's Kids, a non-profit organization in North Texas that assists families with children who have large medical expenses. The June Golf Tournament is almost full, but you can still participate! Please help Charlie heal by purchasing a ball for the Kenna Cup Ball Drop. Each ball gives you one chance to win 2 round trip airline tickets anywhere in the USA! Balls are only 10 dollars and are a GREAT way to support Kenna's Kids and Charlie. Please read about it HERE and get your balls HERE. If you have any questions about volunteering for the tournament, sponsorship or the Ball Drop don't hesitate to contact Jeremy Piggottt at JBP@kennaskids.org. Thank you all for your continued love and support!
This spring has seen quite an increase in therapy for Charlie. Some of it was spurred by our meetings with Dr. Dowling (Charlie's neurologist) after his winter MRI and some of it was spurred by assistance from Kenna's Kids. It's a brutal schedule for a 20 month old so we've started calling
his therapy sessions "Baby Olympics". The
amazing women that make up Charlie's therapy team have our deepest
gratitude and respect. They are making great strides with
Charlie and we see results each and every day.
One new development is that Charlie's physical therapist suggested we move forward with a
leg brace, which will help Charlie better support his weight in
modified standing positions. It will be a first step in teaching him
how to balance, shift weight and develop muscle control in his legs. So
Charlie will be getting fitted for that in the coming months.
Also, a few weeks ago, Charlie underwent a Modified Barium Swallow Study. This is a study which helped us to understand how the internal musculature of his mouth and throat work. Charlie was fed foods of various consistencies laced with Barium. Then we watched an X-ray video of Charlie masticating and swallowing the food. It was clear from the video that one side of his esophagus is weak and is less effective at swallowing. What usually takes you or me one clean swallow to clear, Charlie must take three to four swallows to clear.
We also found that his awareness of food in his mouth is very low. From what we can tell, his taste buds do not register mild foods and the surfaces of his mouth are desensitized to food textures. As you can imagine, this is very dangerous for Charlie. He knows that food has been spooned into his mouth and swallows as best he can. But if there is food left in his mouth, he cannot detect it. This leaves him vulnerable to aspirating, coughing and sometimes even choking. The good news is that Charlie is working with an AMAZING speech therapist at the Callier Center in Dallas to help him learn to eat more effectively.
Below are some photos and a video charting Charlie's progress.
Charlie in his favorite spot - his back yard swing!
Charlie and brother Walker playing at home in Charlie's new play chair.
Charlie using a crayon for the first time. The green hatch marks are his!
Charlie reaching out for his sleeping brother with his LEFT hand!
And below is a video of Charlie drinking from a straw for the very first time!
I was a thrilling moment and we're so glad to have caught it on video.
Thank you so much for your continued love and support for Charlie. We are so grateful that you stay in touch and follow along.
Its been a while since we updated you here on Charlie's progress and recent medical tests. Charlie has had a fantastic few weeks, connecting verbally and visually with family and friends, reaching out for objects with both his right and left hands, and using sign language to communicate with his family and therapists.
As many of you already know, Charlie's doctors are moving ahead with a general diagnosis of Cerebral Palsy as a result of his stroke. We've received lots of questions and emails about what this new diagnosis means for Charlie. We're still learning about it ourselves, but here is some information that might help you better understand what Charlie is looking at.
Cerebral palsy (CP) is an umbrella term for a disorder that affects muscle tone, movement,
and motor skills (the ability to move in a coordinated and purposeful
way). Cerebral palsy is a static condition, but can also lead to other health issues, including
vision, hearing, and speech problems, and learning disabilities. CP is
usually caused by brain damage that occurs before or during a
child's birth (as in Charlie's case), or during the first 3 to 5 years of a child's life. There
is no cure for CP. Charlie will never outgrow it. However, treatment, therapy, special equipment, and, in
some cases, surgery can help a child who is living with the condition.
Cerebral palsy affects muscle control and coordination, so even simple
movements like standing still — are difficult. Other vital functions
that also involve motor skills and muscles such as breathing, bladder
and bowel control, eating, and learning may also be affected when a
child has CP. The good news is that Cerebral palsy does not get worse over time.
Charlie's Cerebral Palsy has been narrowed to a condition called hemiparesis - a very common condition found in children who have suffered a stroke. Hemiparesis is muscle weakness on only one side of the
body. When
hemiparesis happens as a result of a stroke, it commonly involves
muscles in the face, arm, and leg as we've seen with Charlie. People
with hemiparesis often have difficulties maintaining their
balance due to limb weaknesses leading to an inability to properly shift
body weight. This makes performing everyday activities such as
dressing, eating, grabbing objects, or using the bathroom more
difficult. Left-sided hemiparesis, like Charlie has, involves injury to
the right side of a person's
brain, which controls learning processes, certain types of behavior,
and non-verbal communication. Injury to this area of a person's brain
may also cause them to talk excessively, have short attention spans,
and have problems with short-term memory.
So as you can tell, this is still very much a "wait and see" situation for Charlie. We are hopeful that through rigorous therapy and the use of adaptive equipment, we will be able to help Charlie live as full and as vibrant a life as possible. And by the looks of it, he's well on his way!
As always, thank you for your amazing support for Charlie!
It's hard to believe that two months have passed since we last checked in with Charlie Greenman. Charlie's life has changed quite a bit since his most recent MRI report on January 28th. The biggest change is his therapy schedule. In two short months Charlie has shifted from two weekly physical therapy appointments to five weekly appointments that include occupational therapy, speech therapy and time with a private service coordinator who is helping the Greenman Family navigate everything from adaptive equipment options to health care applications.
After the MRI in January, Charlie's neurologist ordered an EEG looking for seizure activity. In November of 2011, Charlie began presenting small physical ticks and autonomic twitches. His doctors wanted to see if the physical ticks were related to possible seizure activity. It was a difficult day and Charlie was very unhappy during the EEG. However, his doctors were able to say conclusively that Charlie is not currently having seizures. Unfortunately, Charlie presented signs during the EEG (little spikes that we don't pretend to understand), that indicate he is at high risk for future seizures or seizure disorders. Here are some photos of Charlie being prepped for the EEG.
Charlie's last EEG was in the NICU. Here he is below - 3 days old.
Charlie continues to grow in leaps and bounds unaffected by his inability to chew or swallow textured foods. He is still eating most foods in a pureed form and is recently tolerating some soft fruits and soft scrambled eggs. Now that Charlie is growing out of his baby chairs, the Greenman Family is starting to introduce some adaptive equipment into their home. The goal is to help Charlie find some new positions in which to play, eat, bathe and interact with his world. He is still not sitting up on his own, so he'll need lots of help supporting his weight in the months to come as he continues to strengthen his muscles and improve his balance.
Charlie is pictured below with his occupational therapist at Our Children's House.
Thank you to everyone who has signed up for the upcoming Kenna's Kids Golf Tournament in support of Charlie. Kenna's Kids has chosen Charlie to be one of their three 2012 beneficiaries and your support is vital to making this year's golf tournament a success! To learn more about getting involved, please click HERE.
Charlie pictured with the other Kenna's Kids beneficiaries, Makenna and Grayson.
We'll finish this update with some very exciting news: Charlie has just begun successfully using hand signs to communicate with his family. His first "word"? MORE! Charlie uses this sign whenever he wants to do more, have more or hear more. He signs for more food, more singing, more playing and more time on the swings. Now that he has mastered one clear sign, his therapists and family are implementing even more sign language. As you can imagine, this is thrilling for Charlie and the Greenman Family. "More" to come!
Thank you for your continued support of Charlie and his family.
Your good thoughts, prayers and contributions make all the difference!
As you know, Kenna's Kids has selected Charlie to be one of their three beneficiaries for 2012. The Kenna Cup golf tournament is their main fundraising event and if you are interested in playing, please register soon at kennaskids.org. You can also contact Jeremy Pigott at 972-342-1758 or at JBP@kennaskids.org.
However, if you do not live in the Dallas / Fort Worth area, as most of you don't, please consider participating in the Kenna Cup Ball Drop. The ball drop will take place at the Frisco Lakes short-game / chipping green immediately following the Saturday afternoon tournament. You can purchase your balls online by clicking HERE. Each ball is ten dollars. YOU DO NOT HAVE TO BE PRESENT TO WIN.
The balls will be dropped from a fire truck above the green. The first ball that gets a hole-in-one wins two round trip tickets anywhere in the continental US. Please support Charlie and Kenna's kids by purchasing your ball for the drop! And you can always buy more than one. It's a wonderful way to show your support from afar! Here is a photo of last year's ball drop:
Sign Up Information:
To sign up for the tournament, to buy a golf ball for the ball drop or to find out more about sponsoring a hole or a beverage cart, please contact:
And here is the BEST part about participating in the Kenna Cup Ball Drop and tournament. You're not just helping the Greenman Family with Charlie's overwhelming medical expenses - you're also helping Grayson Hughes and Makenna Johnson. Grayson and Makenna have also been chosen as beneficiaries for 2012 and we'd like to introduce them to you.
Grayson Hughes
In September on 2011, Grayson Hughes was diagnosed with Acute Lympholblastic Leukemia. Before his diagnosis, Grayson was an energetic, fun-loving, football playing, break-dancing kindergartener. His new norm consists of several visits a week to the cancer clinic to endure high dose chemotherapy and other risky procedures.
He has had several hospital stays, two surgeries, countless spinal taps and bone marrow aspirations and has been so courageous throughout it all. He still has a long road ahead, but will continue to be the brave little fighter that he is!
Makenna Johnson
Makenna was born September 21, 2004. Throughout her short life, she has been through more than most people could ever imagine. She is seven right now and does not walk, talk or feed herself. She has been diagnosed with several things. The primary diagnosis for a long time was Cerebral Folate Deficiency (CFD). This causes seizures and developmental delay. She also has areas of Cortical Dysplasia in her brain. In other words, Makenna has areas of "dead brain". Her intractable epilepsy (seizures unable to be controlled by medicine) forced her doctors to take desperate measures to save her life. To date, she has had four craniotomies and now almost all of the right side of her brain is gone. Each new day with Makenna is a miracle. To read more about Makenna, please visit www.caringbridge.org/visit/makennajohnson.
PARTICIPATE NOW:
This is going to be an incredible event. Please sign up to play the Kenna Cup Golf Tournament or participate in the Kenna Cup Ball Drop. Your support will ensure a successful fundraiser and more importantly, it will help Charlie, Grayson and Makenna to meet their challenges with a greater sense of strength, grace and community support. Thank you so much!
As many of you know, Charlie had an appointment with his neurologist on Thursday to check in about results of his recent MRI. This was Charlie's first appointment with Dr. Dowling at Children's Hospital in Dallas. I have quite a bit of information to share with you, some good and some difficult. I will try my best to explain things clearly and to give you an accurate picture of Charlie's brain scan.
First the good news. Dr. Dowling was enthused by Charlie's ability to connect with him, smile, laugh and interact socially. Dowling explained to me (Sarah) that most of the patients he sees have neurological disorders and brain damage that prevent them from socially interacting with their family and others. Once again, I realized how lucky we are in Charlie's gregarious social nature, his desire to connect and his healthy smile.
This was Charlie's third MRI. His first was in the NICU - a haunting picture of his brain hemorrhage when it was new. It was like looking at a lake, below the surface of which there hid an underwater city. The second MRI was taken when Charlie was three months old. The images showed the bleed in the process of being absorbed by the body, very little scar tissue and a foggy field of brain matter surrounded by healthy brain. To continue with my metaphor, it was as if the flood waters had receded to reveal a water-logged city. At the time, Charlie's neurologist, Dr. Majeed, explained that we would have to wait and see which parts of the city survived the flood. On Thursday, the wait was over and I was able to take a peek inside Charlie's precious head.
I saw a beautifully clear photo of Charlie's brain. I could see that the previously foggy field of affected brain was no longer present. The affected area did not survive the bleed, but died away leaving a dark hole in the center of his brain's right hemisphere. Looking into the black space of Charlie's brain was very difficult and I'm still not sure how I feel about seeing this photo. I have created a little sketch to show you what I saw. (Hopefully I'll be able to replace these drawings in the near future with the actual MRI images. But until then, my silly cartoons will suffice.)
The next image I was shown, highlighted the extensive scar tissue that surrounds Charlie's black space. As with any wound, the body creates scar tissue to secure and protect the body from further damage. Unfortunately, scar tissue in the brain creates impenetrable walls, which stop or stall messages from being sent and received in the brain and body. If the brain creates a descending message to the body and that message is stopped or stalled by scar tissue, then the brain will fire off another message. And another. And another. This creates shaking and twitching and palsy in the body. We have seen some of these signs in Charlie. The thick black lines in my sketch below represent the scar tissue on the right side of Charlie's brain.
As you can see, the scar tissue extends backwards and forwards into the frontal lobe. Dr. Dowling explained that this front portion of the brain doesn't develop until puberty and that we need to prepare ourselves for lots of neurological change when Charlie reaches Jr. High age. Most kids go a little nutty around that time, but Charlie may also have to contend with (if he hasn't already) late-onset epilepsy, depression, learning disorders, personality disorders, Autism and more. Again, these are not diagnoses, Charlie is simply at a much higher risk for these disorders.
One of the first things that Charlie's NICU doctors explained to me, was that his brain bleed had reached the Thalamus. This is still the case. Charlie's Thalamus, which is like the mother-board of the brain, is damaged. Most of the sensory signals, like auditory (sound), Visual, Somatosensory (from your skin and internal organs), go through this organ on their way to other parts of the brain for processing. It also plays a function in motor control. The other part of the brain that controls motor function is the Medulla Oblongata, a funny Mickey Mouse shaped thing at the base of the brain. Charlie's Medulla was also damaged by the bleed. It looked like the Medulla was a sweater that had been moth-eaten, left thread-bare and misshapen. Again, here is a cartoonish sketch of Charlie's Medulla.
The final photo that Dr. Dowling shared with me was of Charlie's Corpus Callosum. The Corpus Collosum is usually a thick bundle of connective tissue (like wires) that create a bridge of communication between the left and right hemispheres of the brain. It usually resembles bundled cables. Instead of being thick and full, Charlie's bridge started thick at the base and quickly thinned into a spindly string. As you can imagine, this presents huge obstacles for Charlie when trying to coordinate impulses, movement and thought. Here is my last drawing.
We did receive some good news. Charlie's Cerebellum (also known as the reptilian brain) is perfect and totally untouched by the bleed. The Cerebellum is the little fern-like mini-brain at the back of the head that hangs out near the brain stem. It is associated with the regulation and coordination of breathing, digestion, circulation, elimination, temperature, the fight or flight response, movement, posture and balance.
Dr. Dowling was very pleased to see that Charlie has free and easy movement of his left leg. It is not rigid or taught in the way that Charlie's left arm and hand tend to be. This freedom of movement in his "affected" leg and the in-tact Cerebellum are encouraging signs in Charlie's battle to crawl and walk. At this moment in Charlie's development, he is unable to sit up unassisted, crawl or walk. He is, however, and expert roller! And we are constantly pulling him out from under furniture. As you can imagine, Charlie is VERY determined.
I know that most of the information we shared here is difficult to read, much less comprehend. What does it all mean for our Wonder Boy? It means that he can look forward to a childhood filled with therapy and medical tests. It means that every physical, mental, emotional and educational stride he makes will be hard fought and hard won. It means that every impulse he ever has in his life will be translated and re-routed. It means that he will be delayed. It means he will be frustrated. It means that he may not do all the things we hope for him. And it means we have no idea what Charlie's future holds. To say that Jack and I are not completely terrified would be untrue. But in these moments when we're forced to face the realities of Charlie's extensive brain damage, we comfort ourselves by being present with Charlie. One look at our son soothes our fear of the unknown and reminds us how lucky we are to be here with him.
Speaking of the future, Dr. Dowling has ordered an EEG and lots of other tests for Charlie. He also encouraged us to stick with the therapies. The brain grows and changes through outside stimuli and therapy is all about stimulating Charlie in a variety of ways. We will continue seeing our wonderful physical therapist (Lori) and speech therapist (Michelle). We are also, with the amazing help of Kenna's Kids, beginning occupational therapy at Baylor's Our Children's House.
Congratulations! You've made it to the end of this immense post. Thank you for all your support and love. Charlie is thriving because of the incredible support of his community. Gratitude, gratitude - nothing but gratitude. We would like to leave you with this wonderful video we took of Charlie tonight. My hope is that it will soothe your fears and remind you that all we have is THIS moment. Sometimes, the only thing you can do is laugh...
