Good News for a change! Tyler does not need surgery. His mic button is way too short and has caused a constant pressure sore. The specialist took out the old one (24 French 2.0 cm) and replaced it with a 24 French 2.7 cm. We are hoping this easy fix will stop the problem. He wants us to try it out for a month and then let him know how it looks. We may have to move up to a 3.0cm. What a relief! We can take him off the antibiotics (yeah, cause it is causing nasty diarrhea) and hopefully the area under and the around the mic will heal. An easy fix!!!
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grandmother of Tyler (27): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change." -
Hooray!
((((((Tamie & Tyler)))))) ~
WONDERFUL NEWS!!!
Doing the Dance of Joy!!!
An EASY FIX!!! YAY!!!
I'm thinking this specialist should be your Go-To Guy from here on!
Sending lots of positive energy that the new mic does the trick!
Love & Light,
Rose
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.Comment
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