Charlie's Wish List

Hello Charlie fans! Charlie is about to embark on a big couple of months.  Starting next week, he'll be attending a 10 week session of the "Steps Program" at the UTD Callier Center. This class is designed to help Charlie move in the direction of doing some things on his own - mainly eating.  We're all very excited about this class!

In the past week, Charlie is displaying big desire to move. He is throwing his weight around and fearlessly trying to get from point A to point B. His motions are of course uncoordinated and sometimes a danger to himself, but we are actively finding ways to help him get where he wants to go. We can also see that he is frustrated with meal times. He wants to eat what his older brother is eating but lacks the ability to chew or process foods with more texture.  His communicates his frustration by screaming, squealing, hitting and arching his back.  It can be a little overwhelming to witness, but we find that if we stick with him and make multiple offers, we eventually come to a place of contentment.

Generally, Charlie is very upbeat and smiley. He loves to play with his brother, wrestle on the bed, pick up and drop toys and listen to songs.  His favorite is "row your boat" - he takes both of your hands and rocks back and forth while you sing.

Charlie has now been on his anti-seizure meds for 8 weeks and they seem to be a good fit for him. He recently had a small seizure but seems to be handling his Epilepsy with the Trileptal. We are so grateful for the medication because it has kept his little daily seizures at bay. 

We recently purchased two "Signing Time" DVDs for Charlie and our family. As you know, Charlie is in the midst of learning sign language. Charlie will not be able to speak for quite some time. Until then, we want to give him a clear and efficient way of communicating.  So far, sign language has been the most successful route.  We'd love to add the three DVDs below to our home library.

Volume 2  -  Volume 3  -  Volume 4

One of our favorite chairs for Charlie is a brand called Charries.  It was given to us second hand.  Charlie loves it, but it does not have the straps or the tray.  The one we currently have is a 9" chair.  Charlie is growing quickly and we'd LOVE to have the next size up with a tray for easy eating and play time. 

11" Charries Adaptive Seat with Premium Tray via Amazon

We'll be adding items throughout the month as we learn more about what Charlie needs.  He'll get his orthotic leg braces in September, and we'll know more about what he requires at that time!  If you have any questions about the items listed above, feel free to email us at charliesfund@gmail.com.  And as always thank you for your amazing continued support.  Charlie is so very lucky to have you in his life - and so are we.

Yours,

Sarah Greenman