So we didn't want to "jinx" our return to home, so sorry we've waited to post. Braden has not made the easiest transition. His past ability to adapt quickly seems to have diminished on some levels, but no explanation nor situation is ever simple. Mommy and Daddy have had to readjust their expectations from our bouncing baby boy who has always been so resilient. Progressive brain damage is something we are all learning to adjust to. We have had issues with the heated humidifier and the in-line humidifier that has taken him some time to adjust to. While we were wondering if we will ever be able to live outside the hospital again, Braden has turned the corner.
Last night and this morning, we have met the upgraded version of Braden, Braden 2.0. He is a spunky little mess who kicks his legs around like crazy (a new talent) when he is not content with position, hunger status, gas pain, vest therapy, etc. This new wiggle worm is harder to get dressed and change diapers on. It cracks us up to see him wiggle around like a "wild man". I will have to try to catch video of it.
He is wide-eyed the past 2 days, looking more alert than we've almost ever seen him. Maybe the energy he is getting from his "mito-cocktail" of vitamins is allowing him to find more energy to use:-) He has figured out how to move his left arm around with fervor and in all directions, and the right one he will stretch out to the side. These are all new post-trach developments.
We hope to have fun cutting hair this weekend, it's getting long on him again. Don't worry, the curls aren't going anywhere. Thanks for the patience as we try to readjust to life in the real world again.