Enjoying the hell out of #September as he has been all month! โค๏ธ #BaDeYa #RanchLosAmigos #Neuroplasticity #Robotics

#September

CHLA NICU Reunion happens every two years. Went to the one when he was 1. It was an emotional day. Skipped the one when he was 3. Came to this one feeling strong & looking forward to reconnecting with one particular, soulful doctor who gave me hope back then. Can’t find the doc & Mace is happily asleep. Guess I’ll consider the cotton candy & enjoy the band. ๐Ÿ˜Ž

Stand Withย Maceo- Trailer

I’m in the very beginning (I don’t know what I’m doing but I’m gonna do it anyway) stages of making a documentary about my son Maceo. Your support of him (and us) has been beyond heartwarming and also, I must say, surprising to me. I didn’t know there was so much love out there! ย I didn’t feel particularly jaded. It just didn’t occur to me that others would care the way that you do about Maceo & what he is working on. ย So, this is very rough, and just a first step toward arriving at telling the story that is unfolding at our house. But I thought you might like to see it.

Since we finished this trailer a few months ago, I’ve been weighing questions like, “What is the purpose of this film?”, “What’s the most helpful part of Maceo’s story for others to experience?”, “Why are non-verbal kids so sorely neglected in terms of literacy?” & “Whose minds do I have to change to fix this?”ย 

I think the only way that I will begin to answer those questions, is to begin to tell our actual story & to look for answers along the way. So there you go. Here’s where we’re at so far..

Maceo tried out a power wheelchair yesterday for the first time. We didn’t know what to expect but needed to try in case it might be an option for him. He took to it like a fish to water! He’s steering with his head, leaning to one side for turning & the other side for going straight. Hallelujah! Independent mobility, here we come. ๐Ÿ‘Š

Botox today to help loosen tight muscles in arms, legs & thumbs & now an overnight sleep study to see how his lungs are working. The kid doesn’t quit.

Maceo is in kindergarten! Can’t believe it. Working on sitting up today at PT. ๐Ÿ‘Š

Here Maceo & the Upper Extremity Robot are working together to create new pathways in his brain. Neuroplasticity is the name of the game. #rancholosamigos

Getting set up to use the robot today! #rancholosamigos #dontgiveup

Drive time. ๐ŸŒž