CBD and AFOs

Jonah’s week has been a little less busy for him than usual. We did cancel some therapies this week so I could attend to a death in the family. If you don’t know I am a licensed mortician and while I am a stay-at-home mom 99% of the time, I will take cases of those I know or are close to, and on the occasions when the funeral home is shorthanded. With that said he got a pass on speech and swim this week. 

PT this week was working with him in his new AFOs (leg braces). He is tolerating them for about 4hrs at a time. Once I take them off to give him a break, he doesn’t want them back on. The goal is to get him to wear them as much as possible through the day. It’s a process to work up to that. He is having to learn some adaptive movements when he is wearing them. For example, his PT has worked with him for a year on going from standing to sitting and sitting to standing. That transition is not easy for him, and he has struggled to coordinate the body movement to bend and shift weight to do so. With the braces on he’s unable to pull his legs in to stand like you naturally would. The braces prevent his ankle from bending so his feet and legs are fixed at a 90-degree angle. Try standing up like that. It’s not easy. So, this is causing him some frustration and I can totally understand. On one hand he had just started to manage that skill with some efficiency and now it’s not working so he must learn to adapt. But on the other hand, the benefits of the braces are so important. You must pick your battles. I will share a picture of his legs to show just how misaligned and pronated (turned inward at the ankles) they are so you can better see the reason for the braces. 

I also wanted to talk a bit about his sleep. Autism and O’Donnell Luria Rodan Syndrome both has severe sleep disturbances and insomnia as an all-too-common symptom. Jonah will be 3 soon and only started sleeping through night in June. That is directly a result of CBD. It’s a bit controversial to have a toddler on CBD daily but I wanted to take a moment to explain how much improvements it has helped make. Jonah’s normal night as an infant was having 4 wakings a night for bottles, then as he grew those waking became longer and fewer. Meaning when he would wake, he was awake for a longer period of time and that got progressively worse, and when he did wake, it was in hysterics. This was a big issue for everyone in the house. It affected Jenny, and Eyla as well. We were all exhausted. Casey and I had to divide and concur. (We tag teamed it until Jenny was born and then it fell to Casey exclusively as I was now up nursing a baby through the night.) We had separate rooms and separate areas at night. He had Jonah’s monitor and I had Jenny’s. When Jonah would wake we would have to get him in the bath (baths calmed him) or down to the basement playroom before he woke anyone up. He would be up with him from 2-4 hours during the night. Every. Single. Night. And some night multiple times a night. We couldn’t be in the same room because between both Jenny and Jonah someone was up every hour and we would hear both monitors. By having separate sleeping areas, we were only awoken by one child and not two. It was awful. We would pass each other in the night as we are refilling bottles or grabbing snacks. Casey was a rock star during that, but some nights it still took both of us to put our heads together and figure out what we could do to help calm him or to relieve the other so that person could step away from the chaos and screaming for a moment. This took a toll not just on us and the girls but Jonah as well. He was chronically sleep deprived, tired and exhausted. His body was never getting into recovery sleep, and his brain was never resting nor was his body able to heal or repair itself like it should during deep sleep. Melatonin was not an option for him as it caused major nightmares. We tried everything from magnesium to chamomile tea, to lavender, warm baths, etc. Nothing helped. Until his doctor in Texas said to start CBD. We are so fortunate to have a family friend that grows and sells small batch, high quality, potent and 3rd party tested pure CBD oil. Frogtown Hemp out of Dahlonega. It’s been a game changer. Now that he sleeps the quality of life for him has improved as he is rested. Imagine going 2 years and never sleeping more than a couple hours at a time. He isn’t groggy or loopy when he has it. He is just calm and goes right to bed. I wish we had used it sooner. It’s such a safe remedy for anyone. We all basically got a part of our lives back. Casey and I were able to go back to one room and no one is screaming during the night and he is in bed by 8 every single night giving us time to catch up on laundry and each other’s day or watch a movie with Eyla. Sleep was a prayer we prayed for, for a long time and it was answered. Ain’t God good! The worst part of it, is that it’s a “medicine” he needs daily and another item not covered by insurances, so it has to be paid out of pocket and good quality CBD isn’t cheap. This isn’t gas station CBS folks. 

Ultimately, he will remain on CBD inevitably, and that’s perfectly fine for him to do so. So, while it may be controversial to some, when you know just how it’s working to help improve lives then there really is no controversy to it. 

Prayer requests:

-          Adapts to the leg braces and can adjust his body movements to better move with them

-          Speech, FULL CONVERSATIONAL SPEECH!

-          That he will walk away from the walker one day and no longer need it

-          Increase in foods he will eat. We are desperately trying to get him to try new foods.

 

Thank you for following Jonah’s Journey. He has the best little fan club supporting him. 

We love you all,

-The Mabes