The Fish

I have been trying to get Cole into aqua therapy for over 8 months now. Turns out, it is hard to find a therapist in our area. Add that to finding someone who has an opening when Cole is not in school or not on Sunday and it makes it even more difficult. I can't even start on the Reader's Digest version of what it took to get into finding someone who takes our insurance and the process it was to actually try and get an "alternative therapy" approved!

SO, like other things that we have tried including homeopathy, neurofeedback, SPIO and other stuff that has been considered "alternative", aqua therapy is not seen from an insurance point of view as something that is useful (aka-should be covered). However, we took the plunge hehe. I think I might get it 60% covered...maybe. We'll wait and see.

Cole has not had formal therapy for a year now. In a Dravet kid's world, that is just crazy talk. WHAT?!! Just plain crazy. The majority of children Cole's age who have a Dravet diagnosis have global therapies (mainly physical, occupational and speech). He needs it, but with the move and starting school, Slugger and everything else that went on last year, adding dragging him around to various clinics to get maybe 30 minutes a week of therapy just didn't happen. So, I put the pedal to the metal at home and we did a lot of stuff that would qualify as therapy. Everything from fine motor to gross motor to speech, feeding, occupational, social...you name it. His left side is weaker than his right. He still runs sideways and leads with his head. He still toe-walks occasionally. Still needs deep pressure therapy. Still working on jumping, but man we have come a long way for just the two of us (and Slugger)! Still, Cole can only benefit from me so much. He has Occupational and Physical Therapy built into his IEP at school but let's be honest, it is not a real session. Remember when I went to school every day for 4 months? I saw the therapists and the time that they spent with my son. It was not really their fault, since they have to see an entire classroom of kids once a week for 30 minutes, but nothing they did with Cole could lead to progress.

That said, I have started dragging the boy an hour each way for 45 minutes of physical therapy, in the water. He loves it! Just like I knew he would. His seizure activity has dropped during the sessions now that he is used to his environment and his therapist. He really pushes himself because he is having so much fun. The car ride is hard on him. Add to that half a day of pre-school and he is one tired boy by the end of Tuesday.Aquatic Therapy is a good fit for Cole since it strengthens his core, hopefully slowing ataxia and the crouched gait that a lot of Dravet kids get. His limbs are also supported by the water, so he can work twice as hard, using the resistance and support of the water to exercise his muscles instead of just using weights-which he hates. It's also fun for him, so it keeps his attention a lot longer than traditional therapy.Things like having him crawl with weights in his hands would take a lot of cajoling from a therapist in a regular PT session.Slugger gets a lot of attention while we are there. You really don't expect to see a dog at an indoor pool! It is really hitting us hard in the financial department-over $100 a week out of pocket; but I know that it is really helping! I can already see him using his left side better. Plus, it is one of those things that gives me a "pinch-me" moment. Last year at this time, we could not even take him near chlorine. Let alone to an indoor pool that has other people in it! Talk about overstimulation :) temperature, new environment, light, noise, the works. We could not have spent two hours in the car, eaten a meal on the road (geez keto, I am glad you are gone!), or have therapy and school in the same day. We certainly did not have a nurse to help me drag everything around and keep an eye on Cole while we are in the car, and we did not have a hairy, lovable pooch to cart around. So yes, it is hard work. It costs a lot of money. But man is it worth it! Look at that smile :)I think he may even be ready for hippotherapy...and when that happens, I am going to break out bawling; I just know it.