Day 667 - Halloween Costume & Speech Therapy Update

Friday, October 28th, 2022

So yesterday we had Speech therapy, whoops! These days are all running together. It was the first time James had used a Passy Muir Valve off the vent. Previously James was using an in-line PMV. Again, these are allowing James to inhale through his trach but only allowing him to exhale through his nose and mouth. Below are the consult notes that were sent by the Speech Therapist afterwards. This is a brief summary and definitely doesn't encompass all of what James can do, just mainly a required document for the program.

Successes:

James continues to make vocalizations, He will make signs for more and toy. James enjoys eating and will stick his tongue out to taste food. He is able to use an open cup when assisted. When he was tired he waved good-bye. He will independently transfer supine to sitting and rotate in sitting to get a toy.

Challenges:

James continues to reach instead of point with 1 finger. He is not waving goodbye consistently. After eating his food will frequently come out of his stomach through his g.tube opening. He continues to be resistant to prone positioning and quadruped. He demonstrates rounded spine in supine and sitting. He is unable to move forward in sitting or prone.

The team (family, caregivers, primary service provider and supporting providers) will continue or modify the following strategies to achieve goals:

Work on signs paired with words. Work on chewing exercises such as teethers to chew. Help him to identify body parts on himself and mom and start with just 1 body part until he gets it. Use just 1 word to associate waving goodbye. Continue letting him taste things. Make signs fun and like games. Demonstrate and use hand over hand to sign sleep when tired and to wave when saying goodbye.

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Today the plan was to go to an Early Steps Halloween Costume Party but we ended up deciding not to go. Many factors included that it was almost an hour away (during his trach care), being around sick kids during RSV season, and James is not able to participate or trick or treat yet. So we deciding it really wasn't worth it. Instead Mom did a photo shoot with James. He dressed as a bodybuilder, Mr. Trenton of 1961 aka Grandpa (Dad's Dad). Outfit created and designed by Aunt Robin! James will definitely be using this shirt again in other outfits it is too cute! 😂

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com