LJ had therapeutic riding this morning. He was not afraid to tell everyone how he'd rather be eating applesauce and graham crackers. Ms. V, our therapist, had to review the schedule with him multiple times. First ride Lee Roy the horse. Then snacktime. He got to feed this lovely 2,000 pound creature an apple at the end of his session. Big horse, Lee Roy, was really a gentle giant though. One of the exercises involved big yellow dice, that LJ would hold at midline with both hands and let drop to the ground. Whatever number it landed on, was how many steps he and Lee Roy could advance farther. LJ had to practice some speech by trying to give Lee Roy the "walk on" command when it was time. It really takes a lot of core strength, trunk control and neck control to keep from doing the head bob jello neck. His body, as you can see from the video, is trying to acclimate with each shift in weight from the horse's gait. Interestingly enough, he can keep his balance when he wants to tell me the sign for "eat". All 27 pounds of him...on a 2,000 pound animal. It's incredible.
Back in the Saddle_LJ August 2011 from Jenn S on Vimeo.
City Slicker_LJ (almost 3) and Lee Roy August 2011 from Jenn S on Vimeo.
It's also been awhile since I checked in. LJ had a weight check regarding his tube weaning. Despite the feeling that he eats enthusiastically, he hasn't gained any weight in 6 weeks. We're at a standstill at 12.22 kg and 91 cm. It sort of makes sense, since he was always being force fed, I mean tube fed, whatever the prescribed bolus amount was whether or not he had a full-feeling. I don't think he was ever at his natural weight. Another contributing factor is all his activity. He is a squirmy worm. He kicks a lot, he tries to wriggle out of my arms, he can fold himself over to touch his shoes, completely over his legs when seated in his wheelchair. So zero weight gain leaves us needing to supplement his oral intake with 200 extra calories a day. We've added extra butter, oil, protein powder, pediasure, avocadoes and the like to his list of preferred foods. We'll have another weight check in 6 weeks. We'll see.
We met with the neurologist. The doctor feels like LJ's main focus should be therapy. No MRI at this point is going to yield any actionable information. The area where LJ's brain suffered the most injury, is his basal ganglia. Its hard to tell from it's location just how significant his body was impacted but there are so many signals going through this bundle that effect his nervous system. We continue to intensify therapies and see whether he will have verbal output and the strength to walk or sit. So, in a nutshell. It wasn't a bad meeting. Just wasn't the clarification I was hoping for.
We also met with a really awesome speech therapist/technology consultant. She met LJ and I and worked with us on his iPad for communication. We're trying to tap into helping him communicate easier and more effectively. It was a productive meeting and she shared a lot of knowledge and cool cause and effect apps to work on with the lil man. We're meeting again soon so I will devote an entire post to it later.
School starts soon. We are still having meetings to discuss evaluations and do the early childhood intervention reviews before the transition to a new special needs program through the county. I'm trying to get a meeting to revise LJ's IEP for school. We need to add things like oral feeding goals since at the time, he hadn't been weaned from the feeding tube. Amongst many other things, we also need to allow for the assistive technology devices. I'm following up with the rehab equipment folks to check the status of the stander and chair we had fitted for LJ back in May. And nope, it's still not in. The orthotic body suit and glove to avoid another round of botox still isn't in either. And so it goes, we wait. We call. We follow up. We wait. We are spent but we are fighters. We are hopeful parents, grandparents, brothers and sisters, aunts, uncles and friends. We are hopeful.
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