Luke wanted to do wagon stuff and have Daddy take him on rides. Dad always put special pillows behind him as 1/2 way through the walk he would slide down into the wagon and had zero trunk control to get himself up.
Again, Luke could sit up but he would eventually start slouching and have to be respositioned. We could never walk away from him at any moment besides flat on his back.
At this point, he could cry somewhat without suctioning.
Waking up and pulling his tube. (for us..this was a milestone)
Cognitive development was so there. He could hold his paci and figure out how to make things happen with his feet and hands.
We tried Horse therapy at this point but his weakness stopped us from going after a few weeks. He could not handle the crying on the horse without us having to stop after only 5 minutes. It was again....frustrating. We will try back this fall when it's cooler.
Luke loves stimulation --OT work, textures, balls, cloths, anything that has textile touch..he loved it. He was not averted to any type of toy...he just embraced all that came his way. We give credit to therapy early on for this. (And God of course!)
We finally got a Gait Trainer to help promote strength in his legs. He did not like it at all. This equipment constrained him and he missed the walker.
His fatigue showed again.Began Vital Stim therapy. I cannot tell you how much I believe this has helped us prior to medication. We saw radical results in his 'managing of secretions' with Vital Stim therapy.
Video of Luke doing Vital Stim:
We were still asked...."is he sleepy" all the time. The time of day here is 4:00pm (after a 3 hour nap)
His special needs wheelchair was a Godsend. Literally. Luke would 'slide' and 'slip' out of regular strollers. So, this really helped as you can see below.
Easter picture ---of course!