127 Seizure Free Days

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:

• We couldn't go out for dinner. The lights were too much. The noise was too much. If a fork hit a plate too loudly across the room our son would writhe in pain, scream-cry and we'd have to leave.
• We could rarely go to the grocery store or to places like Target. Once again - the lights and sounds were too much but so were the smells. I KNEW right away that he was sensitive to smells when as a newborn he would just start screaming and crying if someone had too much perfume on, they smelled too heavily of smoke, if I happened to walk too close to the Pharmacy or if I didn't run by the Detergent and Scented Candle aisle fast enough.
• I couldn't take him to the park with other moms and other kids. The shrill happy screams of other children would send him over the edge. Their noise (and one pitch in particular) would make him suffer actual physical pain and we would have to leave the park with a crying infant.
• I couldn't take him to any of the indoor play areas in the winter-time either. We live in Iowa, as a stay-at-home-mom in the winter here, you NEED to get out but we simply couldn't do that. Instead of meeting up with other moms and other children, we'd go out before the mall was open and let him roam the halls in with the mall-walkers who loved to see him tearing down the hall in  his golden walker.
• We couldn't go to splash pads or playgrounds. He didn't enjoy water or tolerate it at all when it was cold. If it hit his skin he actually acted as if it were physically hurting him. Baths were torture for him as well. EVERYTHING had to be room-temperature or it was just too much for him.
• His Sensory Processing Disorder was hard to manage. At his weekly therapies he couldn't handle the sensory bins. He'd literally fold his little body in half and wait for you to pull him right back out. He couldn't handle the gym at therapy either because it was still too much noise and too much going on that he'd just melt down. More than half of each 30-45 minute session was used up trying to calm him enough to do one task.
• Eating was a major issue. Textures could make him have violent reactions. If he touched applesauce or any other wet/squishy/soft food his hand would jerk away as if he touched something hot. Sometimes smells, sights and the feel of food would literally make him gag and/or vomit. He was failure-to-thrive as an infant due to his issues with food.

After Cannabis Oil:

• We can go out for dinner. He isn't overwhelmed by the lights or the noise or people hitting their plates with forks. We haven't had to excuse ourselves from a restaurant mid-meal in months.
• We DO go to the Grocery Store and places like Target. He actually wants to get down and explore. He wants to touch wrappers and inspect packaging. He will actually SMELL SCENTED CANDLES and sign "more" so he can sniff another one. 
• We can go to the park to play. Now not only does he enjoy the park, he wants to engage with other children. After meeting a family in the park last month, he climbed up the slide just like our friend's little boy had. He was watching.. and learning and saved it for later. I cried like an idiot at the top of the slide because I got to see him be a daring fearless boy for the first time.​
• We got to play at the beach, in the pool and at a splash pad! This summer was also the first summer that we got Abram to go to a splash pad (with a crowd of people), he got in his own pool on our patio AND he walked barefoot on a sandy beach IN the water. I also got to take him to a public splash pad for a picnic one day with some of my friends. Not only did he enjoy sitting on a towel and eating chips and salsa with our friends but he got in the water and had a blast going to all the pretty ladies and splashing water on their legs while giving them his ridiculously cute grin and evil giggle. We also took him to a birthday party at the beach with a lot of noise, a lot of people and he still took his shoes off and walked barefoot in the water and still wanted to swing on the very busy playground before we left!

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• Issues with his Sensory Processing Disorder notably improved. He started doing amazing things like: getting IN the sensory bins at Therapy and tolerating new textures, conquering new food textures and touching new and interesting foods (we still have A LOT of work to do in feeding but he sits still and participates now in Feeding Therapy), he is finally gaining his fine motor skills like isolating a finger to be able to push a button!!!! 

• He began reaching goals and initial milestones with his Fine Motor Skills. He has the fine motor skill to now be able to stack (3) blocks, use a pincher grasp to pull out puzzle pieces and he is working hard on being able to do the shape sorter, pop beads and peg boards. He also has proven he can isolate his pincer grasp to tug at that annoying werewolf fur on the hood of his costume. 

• Bathing is a fun thing for him now. He actually will tolerate water on his head and he is getting on his tummy in the tub and simulating swimming. He kicks and he splashes and it gets him in the face and he doesn't care. Baths are actually FUN! He also enjoys the shower, which was a huge step. He will stand under the water getting it on his face and will try to drink it while he stands there! He also likes to plug the drain with his rear and splash in the water that builds up in the shower basin. 

• He got to be a little boy. This is what the politicians don't get. Cannabis oil let my by get to be a little boy. We got to take him to the Zoo for the night set aside just for the Special Needs Kids in our city where he met some awesome Super Heros. We got to take him to my husband's work outing at Adventureland where he loved riding on the tea cups and he began to learn how to ride a tricycle. Before Cannabis - we would never have been able to do any of that. It would have all been too much.

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.