BIG feeding update for Robbie coming right around his 2 year Feeding Tube-iversary...
Two weeks ago he had a swallow study done to see what progress he has made in the last 1.5 years since the last one. You guys, he made MINIMAL progress and was not cleared to eat any additional food consistencies. Just the same naturally thickened liquids. It was a gut punch after working with him for so long to find out he is still silently aspirating and not coughing afterwards to protect himself and alert us there is a problem. It’s also a battle lately to even get him to eat a tiny bit of things he likes, like yogurt and smoothies.
So we went to a feeding therapy evaluation and they recommended 4 WEEKS (24 hours a day) of Intensive Inpatient Therapy at a hospital in Dallas!!! He would get:
-1 hour ST/feeding therapy AND 1 hour of OT Mon-Fri
-4 structured meals 7 days per week using behavior protocol
-Dietitian 3-4 times per week to track intake and help safely replace a percentage of his tube feeds with oral feedings...weaning baby steps!
-Physician every day
Feeding Therapy would address diet tolerance, Neuromuscular Electrical Stimulation (NMES), dysphagia (oral phase and pharyngeal phase), oral sensory, and parent education.
OT would address the following underlying impairments which impact mealtime: tactile processing, core strength, self-feeding, fine motor skills, regulation for mealtime participation, regulation for sleep, regulation for activities of daily living, self-care, and visual motor.
The psychologist would help address oral-motor and sensory processing deficits as well as avoidant/adverse responses that are interfering with oral intake.
They had an opening in July (2 days after getting home from Utah) until Dylan and Colton’s 1st day of school so I took it! We are still figuring out what to do with Dylan and Colton since Autrey has to work but I’m confident we can figure it out.
The catch is they can't verify insurance benefits until 3 weeks before, which is when I will be in New Mexico visiting family. I am praying they will cover it because it is about $100,000, which we obviously couldn't do and would be forced to do a less intense outpatient program that would eat ALL of our allotted SLP outpatient visits for the year in a month. But right now we are proceeding as if it is truly happening. I’m nervous but mostly really excited about the prospect of finally making some progress toward tube weaning. Keep your fingers crossed for us!!!
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