October 28, 2012

October Update

Hello Charlie Fans,

It's been another big month for Charlie Fighting Bear.  Charlie is in a time of spectacular transition. He continues to attend classes at the S.T.E.P.S. program for feeding therapy. These sessions have proven to be instrumental in pushing Charlie towards a diet of solid foods.  Since I last posted, Charlie has learned to chew and clear some crunchy food items and even feeds himself every once in a while. Both of these are enormous mile stones for Charlie!

Additionally, Charlie is becoming more adept at mimicking sounds and vocal intonation. He'll even go so far as to make the first sound of a word: I say "down", Charlie says "duh".  Or I say "kick" and Charlie says, "kah".  Its a wonderful step in the right direction.  We continue to learn sign language and reinforce signs and pictures as part of our communication.  As of today, Charlie can make the sign for eat, up, more, bye bye, play, music, milk, swing and daddy. He also understands the words no, bed, water and food.  We're really pleased.

Charlie has also developed the unfortunate habit of screaming when trying to communicate. If he's excited, he screams. If he's upset, he screams. If he's frustrated or interested or hungry or needing any kind of attention, he screams.  Its an ear piercing shriek that arrests the attention of anyone within a mile radius. This, as you can imagine, makes it very difficult to be in public with him. It also rattles Jack, Walker and me to the bones when at home. We're trying to offer other ways of expressing his feelings, but Charlie is stuck on the screaming. His shriek-fest started in early September and has not abated. So if you drop by for a visit, don't be alarmed by the sounds emanating from behind the door. 

Charlie is still adjusting to life with orthotic braces. They are helping him bear weight through his feet and I think they've helped contribute to better over all posture. One thing that has become very clear this month is that Charlie's journey to walking is going to be a very long one.  Most of his therapists and doctors are suggesting that if Charlie walks, it will be in tandem with other assistive devices.  For instance, he'll probably be able to eventually walk in our home or in a class room, but will need a wheel chair for longer distances and public mobility.  So, we are beginning the process of procuring an adapted stroller or child's wheel chair for Charlie.  It's clear he'll need one. It's also clear that Jack and I cannot continue to carry him everywhere.  Charlie is 27 months old and over 30 pounds. He has driven us to seek weekly chiropractic care - oye!

Thank you to everyone who helped us stock Charlie's therapy closet!  Charlie's Aunt Jean sent a new chair and tray. His friend Gail sent an adapted wooden rocking horse. And many of you sent donations for Charlie's sign language video library.  We are so grateful to all of you!  Thank you so very much!

The photo below was taken two weeks ago - Charlie sat next to his brother on a bench for almost 3 whole minutes.  This kind of core strength and central control is astonishing for someone with his particular physical challenges and brain damage.  He loved every precarious second of it!

One of the first foods that Charlie fed himself, successfully chewed and swallowed was Cheetos.  Here is a video of Charlie feeding himself for the first time EVER!

I also caught this amazing moment on video... Katherine, our service coordinator, introduced a system of making choices where Charlie looks at a photo to communicate his desires.  We're starting small with words like eat, drink, bed, hug, read and play.  And we're hoping to expand as he comes to understand the meaning of the photos.  This video was taken only moments after introducing eat and drink:

Thanks, as always, for staying connected to Charlie through the blog and Facebook.  
It is with a grateful heart that I write these words... thank you, thank you, thank you!

Sarah Greenman