April 22, 2012

Support Kenna's Kids and Charlie Greenman

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!

Medical Tests, Adaptive Equipment and Therapy

Hello all!

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. 

All our love and gratitude,
Sarah, Jack, Charlie and Walker Greenman

What does Cerebral Palsy Mean for Charlie?

 Hello Dear Friends and Charlie fans,

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!