As if we weren’t busy enough already, we now have therapies EVERY SINGLE day of the week. Gavin is restarting OT as well. Actually, Gavin started OT yesterday. Gavin used to be in speech, OT and PT until he was simply to violent. However, Gavin gets those every week at school anyway so all that happened was we were no longer doubling up. The problem is that Gavin is regressing in these areas and since school is out for the summer he would be without these therapies all together. So we had Gavin “re-evaluated”. Turns out Gavin’s muscle tone is actually worse then Emmett’s. Emmett’s is so bad that Eastgate says he needs braces on his lower legs and ankles. I think I forgot to mention that before (I’ll touch more on that in another post). I suspect that Elliott would benefit from OT/PT as well. He will need to be evaluated. Oh…and yesterday, Emmett was referred to a “feeding therapist” because, well, to be honest, I’m not really sure why. That referral came from the Developmental Neurologist.
So basically, this is what our week looks like for this summer (so far).
Elliott (Dr. Patti)
Gavin (Dr. Patti)
These are just the reoccurring weekly appointments. This doesn’t include ANYTHING else. This summer we have dozens of other appointments around Northeast Ohio. We will see the following at Akron Children’s Hospital: Gasto, Allergist, Triple P, Developmental Neurologist, Autism Clinic (Gavin and Elliott), Dentist, Nutrition, Feeding Clinic and the Sleep Clinic (Emmett). Then Gavin will be at the Cleveland Clinic for neurological follow ups. Lizze has her own laundry list of appointments this summer as well, pain management, psychologist, psychiatrist, neurologist and “hopefully” a second opinion at the Cleveland Clinic is we’re lucky.
So we have a VERY busy summer so far solely based on the health related appointments alone. My goal is to work back up to walking 30 miles per week. My blood pressure is high and my cholesterol is out of whack. The stress is taking it’s toll. I want to lose 50 lbs by the end of the year. That’s roughly 10 lbs a month and I think that’s pretty realistic considering all the walking I will be doing. You can join my Fit4Autism team on Endomondo.com. It’s free and we are racking up miles to raise awareness and improve our health. I lost a lot of weight last summer but then gained some of it back when I couldn’t escape long enough to walk and my eating habits were, we’ll just say, not the best. So that is my focus this summer. I want to get healthier for not only my kids but myself. 🙂
I should clarify..muscle tone can Be improved temporarily through using particular kinds of movement but the effect is not permanent..your boys are in good company though, I’m low tone & hypermobile myself 🙂
It clarifies things a little but it seems like a very extreme measure to me (particularly at his age). In toeing is quite common and often kids grow out if it. The other problem I have with this is that low muscle tone can’t be changed, it’s neurological. You can strengthen muscles but they will always have low tone. Which brings me back to the braces..if they restrict his movement in any way, he won’t be using his muscles correctly and therefore they won’t strengthen. Obviously I’ve never assessed Emmett but that’s just my 2 cents..from what I have seen and what you and Lizze describe he has a degree of postural insecurity and you may find that improving his pelvic/core stability will improve his gait.
I’d be really interested in the clinical reasoning behind using braces on Emmett’s legs…never, ever, ever heard of/considered braces to treat low muscle tone in the UK or Australia.
Ok, after clarifying things with my wife here\’s the explanation. His ankles are turned in. The front of his foot is to wide or something. The braces are supposed to hold his foot and ankle in place until is muscle tone improves. Does that make sense? I very interested in your feedback.