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.
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
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