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.
I just wanted to share that today Abram had an awesome day at Therapy! He said "UP!" to his speech therapist and mimicked "Ohhhhhh" in the mirror for the FIRST TIME EVER! He's been seeing her for over six months and today was the day he actually said a word in front of her. Sadly, she told me that she is leaving and we'll have to start over with a new Speech Therapist but HE VERBALIZED today and that was huge. He'd gone months without making much noise or babbling so we were getting very concerned and then all of a sudden he was making "brrrrrrrr" noises all day yesterday. I'm excited about that.
He also actually pedaled the trike with his Occupational Therapist today as well! He wanted to keep going down the hall even! So, we need to get on the ball and get the adaptive pedals for his trike so we can do the same at home. Right now he's still a little too small to reach the pedals so he needs some adaptive equipment to add on to the pedals to make 'em taller and to also strap his feet to them since he has Hypotonia it's easier for him to be strapped on for ease of movement! His OT sent us a link to some pedals that should work so we need to get those ordered soon so we can get him some good 'ol fashioned toddler exercise.
I went through all of his medical records tonight and have everything ready to go for Minnesota next week. Even made the hotel reservation for Tuesday Night as I plan on going up a day early to try to have an afternoon of fun with him before we're confined to one floor of a hospital! This kid loves being outside so i need to get in as much outside time as possible before we are admitted!
Everything is coming together nicely. Thank you so much for your help and for sharing Abe's story. You are amazing.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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