The last detailed update that I gave you all about C’s health was when he had an EEG done to look further into the brain activity that was picked up during his sleep study. I didn’t update you on the results because I was a little confused by them. The EEG was normal; however, I showed a few videos of C’s episodes to his pediatrician. The pediatrician said that if he didn’t have a normal EEG, he would order one based on the videos. He recommended waiting to see if these episodes continued or started to occur more frequently. If so, then we’d look into a longer-term EEG and he’d have to stay in the hospital for it. If not, then we can just move forward. I haven’t noticed any changes in the past month.
As for his occupational therapy (OT) and speech therapy for his sensory processing disorder, he was finally approved for individual OT and started last week. We’re still waiting on approval from our insurance for speech therapy. I am absolutely thrilled with the OT that he has, and I am confident that he will make fantastic progress. I’m sure it will be slow progress, but it will be progress nonetheless!
Things have become very stressful as far as dealing with his behavior. He’s very defiant, aggressive and sensory-seeking. We’re focusing on addressing his emotionality before we work on any feeding therapy because, quite frankly, I’m at my wit’s end! We’ve learned that C craves sensory input but runs away from it when he starts to feel it. When he’s swinging or jumping, he wants to stop just as he starts to really get that input he needs. We need to push him a little further for him to benefit from it.
We’re trying to address his emotionality through vestibular input. These headphones provide auditory processing therapy. Apparently, the vibration in the high frequency of this special music tricks the brain into thinking it’s getting vestibular input – the same type of input C would get from swinging. We just started using these headphones today. The goal is to get C to wear them for 20-30 minutes, 1-2 times per day. Working on his emotionality via this auditory processing therapy should help us avoid his intense aggression. We shall see!
As far as his g-tube feedings go, he is doing very well! He’s thriving on his blended diet. I blend whole foods for him and feed him via tube 3-4 times each day. He gets fruits, vegetables, nut butters, oils, milk, yogurt, meat, flax, chia seeds and more. If we have eggs and bacon for breakfast, so does he! I’ve found an excellent option for him for when we travel. Instead of bringing along our Blendtec*, I can buy Real Food Blends* and know that C is getting 100% real food without any preservatives without having to refrigerate it. With his real food diet, C has finally reached 30 pounds! I’ve been wanting to reach that threshold for about eight months and I am ecstatic about his progress!
That’s the latest on our little man. It’s a constant one step forward, two steps back process. I may be getting used to that process, but it is still such a challenge every time. If you have a child with sensory processing disorder or a gtube, I’d love to hear you share your story!
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