My little boy amazes me every single day. I love that when I look back at just a few weeks ago (let alone months ago), I can see all these incredible improvements. Many of which the "professionals" told us he may never be able to do. Abram has a serious knack for proving people wrong. We have Cannabis Oil to thank for much of it in addition to the hard work he puts in every single week at therapy with his Occupational, Feeding and Speech Therapists. We are lucky to have accumulated an amazing team of therapists and SCL/Respite providers who work with our family to give him the best life possible, as well. If you are reading this - Thank You.
When our Neurologist first told us about cannabidiol, it was in regards to how shocked he was at how well some of his other kids were doing. I remember him telling me specifically about one child who came in walking and talking when before they were unable to talk or willfully be examined. When I heard him say that cannabis helped a child gain the ability to talk on TOP of having the ability to gain control over his seizures - my heart got hopeful.
It took me months to decide on trying it, despite the numerous times that it was brought up. I was nervous. And scared. But if you know us or have read this Blog, you know how Abram has suffered. You know how many doctors have told us incorrect diagnoses including one Neurologist who told us he was "fine", an Orthopaedic Surgeon who told us he may never walk and a Pediatrician who missed absolutely everything about my son's health issues for the first 10 months of his life.
Before Cannabis Oil:
After Cannabis Oil:
He hasn't gained his words back (he had Mama, Papa and Cat before March), but he is making new sounds all the time and is working incredibly hard for his Speech Therapists. Seizures stole his words but they didn't steal his determination and his inane desire to prove everyone wrong and do all the things he sets his mind to.
It has officially been a year since Abram was officially diagnosed with Epilepsy. I had no idea what the next 365 days would bring us. But here we are! It only took five MRIs, five EEGs, four long hospital stays, four Neurologists, four Neurosurgeons, four world-reknown skull based surgeons, three Epileptologists, three VEEGs, three sleep medicine doctors, two Nephrologists, two Endocrinologists, two ENTs, two Genetic Counselors, two Pediatric Development Specialists, one Craniofacial Surgeon and one Ambulance Ride.
But today, I can say "My son is 127 days seizure free, today!" I realize that as he grows our need for stronger medicine will most likely rise - which is why I am fighting for changes in our laws.
If you live in Iowa and have been touched by our story, please write to our Legislators! I also encourage you to write to our US Congress by writing to your Senators and your Representatives! Help spread the positive message that Cannabis IS Medicine.
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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