Abe has spent the last 7 weeks (we've got 5 more to go) in a very intensive form of Occupational Therapy called Masgutova Neurosensorimotor Reflex Integration (MNRI). It's a type of therapy that is hard to explain but it looks a lot like reflexology and acupuncture combined with regular OT "play". It involves three hours a week of hard work in the therapy setting plus "homework" to do at home working on the stretches/reflexes while not in therapy as well.
The results have been nothing short of AMAZING! The first night, he was able to suck from a straw - a feat we'd been working on for months and after one day of MNRI - he was able to do this! We were actually out for dinner and got a few odd looks as my family were excitedly screeching "You sucked! YOU SUCKED!!" and high-fiving Abram.
His Speech and Language Pathologist noted a large improvement in the sounds he's making and his ability to use his mouth a little better without gagging. Abram currently still cannot stick his tongue out our open his mouth without gagging. No one knows why.... but I'm hoping with more intensive MNRI on the face/head in his upcoming Feeding Therapy that we are trying (again!) will help him immensely. I am officially a full believer in MNRI and the power it has in healing/reworking the brain/body to do the right thing!
Abram is now making sounds like: "sssss", "E!", "FFFF" and "T". This is a broad change to his usual "Uh" sound and with his Klonopin finally being weaned off next month - I am hopeful that we will slowly gain some of the speech he had back before that drug was introduced.
But the BIGGEST DEAL of MNRI is the video below. Abram has been working on riding a trike for YEARS. This week was the first week he's been able to push the pedals and allow the trike to go for a short distance.
It's literally the coolest thing, ever.
I'm a proud mama.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
MOST POPULAR BlOG ENTRY