Today was a bittersweet day for me as I watched Abram walk to the car one last time with his sweet aide, who won't be with him next year. When people take your child in and treat them as your own and understand them and their needs perfectly, they become like family and you worry that the next 1:1 aide won't be as great or that they won't "get" him like she did. It stirs another whole world of anxiety for me but the lucky thing is - next year he will be in the 4-year old pre-school with the same kiddos he had in his class this year - so hopefully that makes it easier on him to transition to afternoon classes. He is such an early riser (up no later than 6am, daily) that I worry afternoon class will be hard on him with no nap - but we shall see how it goes when the time comes. In addition, next year we are going to try for four days a week for the full class time versus just the three days a week for 90 minutes. It will be an adjustment and he gets tired very quickly but I know it will be SO GOOD for him (and ME) to get some time away and do things for ourselves. He deserves to be around other kids and learn from other adults besides his immediate family!
Abe has come A LONG WAY this school year. He did (2) rounds of intensive MNRI therapy for (6) months out of the (9) months he was in school and has vastly improved in his ability to navigate different types of ground/terrain and can make several new sounds and is even saying "mama" every single day - WITH PURPOSE! This was something I worried I may never hear as his condition includes "absent speech".
Abram also made a sweet friend who helped keep him in line (literally, as they had to go wash hands for snacks) and included him in play-time. I approached her mother at the "muffins for moms" event they had for mother's day and weeped at her as I thanked her for raising a kind child and she told me that Abram was her favorite and she talked of him often. So, we exchanged numbers and I hope that we get to have some play dates this summer. I'm thrilled to see the look on Abram's face when he sees her for the first time after school has let out.
Abram has also grown taller, thinned out a bit and is SO FIESTY after we've officially been off of Klonopin for 6 months. I swear I've seen him gain more and more cognitively each month after we took away that nasty drug. He's come more and more alive and is nothing but a ball of energy from 6am - 9:30 or later but I will so take that over his days of being drugged up, sleeping and regressing on his skills. I will take my little tornado any day over what used to be our lives.
This summer is looking to be a pretty incredible one. He's got a sweet new bike, loves his new little kiddie pool in the back yard and is RUNNING down the hill in our back yard when last year he had to hold on to the fence to get down the hump in the very back of the yard. He never ceases to amaze me and BLOW MY MIND!
Abram is my little fearless warrior who is out to prove everyone wrong and I love him dearly. He's taught me so much about life and love that I can't even believe that I get to be his mommy.
Our follow-up with Neurology today went phenomenally. All is good - no seizures - no pharma. In another month it will be TWO YEARS since we started cannabis and changed Abe's life.
Endocrinology was a SHOCK. Abe was borderline failure to thrive as an infant. His lack of growth, global delays and short stature were a major concern to his Endocrinologist. She even recommended growth hormone injections last year -to which I declined.
Today.. He is ON THE CURVE. He grew over 4 inches. His height and weight are "normal". NORMAL.
I have no doubt that cannabis played its part in this part of his health, too. With healing the brain comes so much good - his cortical dysplasia be damned!!
The bad part?! Abe flipped out when the sweet nurse tried to measure his head. Too many EEGs and PTSD makes this kid lose his mind at the sight of a tape measure. In the struggle, she accidently knocked out his loose tooth. (see photo!)
He swallowed a lot of blood during the whole ordeal and after working himself so badly during the blood draw, he vomited multiple times all over blood lab. It was awful. The nurses took it like champs..... but at least it is the kind of awful I can handle with a little clean up.
We gotta focus on the positives and that is this: Abe is continuing to receive POSITIVE medical reports since we started cannabis when before - we had nothing but difficult appointments with bad news and worsening medical conditions.
Cannabis is Medicine!
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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