Abram has been having a pretty great fall, so far. I can't believe that Halloween is right around the corner! Last weekend, we actually got to go on two different outings with Abram, which is basically unheard of! Saturday night, we went to the Palek Studio and Gallery's Annual Halloween Art Show. We didn't get to stay long because lights and people overwhelm Abe and he turns into something not unlike the Tasmanian Devil. If not removed from the situation - there would have been destruction, guaranteed!
Luckily, we can read him and his impulses so much better now and we know that when it's time to go - it's time to GO! I was shocked when he approached "the bride" in the photo above and shot right up in the seat next to her to wave and giggle at her. He was having so much fun saying Hello to all the people and flirting with all the ladies. This kid's got a mean game of peek-a-boo, people.
Sunday, we went to this great pumpkin patch called the Wills Family Orchard and Pumpkin Farm. It was fantastic and literally my idea of what an adventure to a pumpkin patch SHOULD be. It's a great little place secluded in the hills surrounded by beautiful fall colors. There were people there - but not TOO MANY and upon entering they give you some shears and a wagon to go pick out and cut your own pumpkin off the vine.
It was a bright and sunny day so Abram was a little crabby at first. We were actually able to get him to wear his sunglasses for a little bit but after a bumpy wagon ride down the hill, I did manage to get a photo of him smiling! (Nevermind that it involved his Papa holding up a phone with a firetruck siren blaring.) Regardless, he had fun and it makes for some great pictures.
We ended up getting five pumpkins and went home after that but their farm had so much more to offer including a hay rack ride, corn maze, corn pool as well as goats and chickens to pet. We figured we'd better leave while there were still smiles but we plan to make their place an annual family outing. It was just what I always thought it should be like to go to a pumpkin patch. My experiences with "pumpkin patches" prior to this involved grocery store parking lots. Hah!
Abram is also still doing his Intensive Neuro-motor therapy (aka MNRI) and he continues to improve in his fine and gross motor skills as well as making new sounds. That therapy ends about mid-November and then he will be in BOTH pre-school and therapy. So, we'll be spending a lot of time in the car traveling but for Abram - that's pretty much business as usual. So, he'll be in school Monday and Friday for just an hour and then Tuesday-Thursday he'll be in therapies including Speech, Feeding, Physical Therapy and Occupational Therapy.
We are adding Physical Therapy back into the mix because he still struggles with stairs, rough terrain and jumping. We luckily ruled out a visual depth perception issue at a specialty eye doctor last week so now we know that his issues with stairs have more to do with his brain telling his body what to do. We knew that he'd need more PT once he was school-aged anyhow - so this doesn't come as a big shock at all. Just something to add to our schedule.
The point is, things are going well for Abram health-wise. We have a follow-up with Neurology in less than two weeks to have another EEG and find out how Abram's brain is doing on the inside. This time, it's just a short 2 hour EEG and our Neurologist is on-board with doing cannabis oil ONLY as he will be 18 months seizure free by then. Talk about life-changing!
Things are going in the right direction. I couldn't be more thankful.
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.
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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