Noah received his Dymanic Movement Orthoses (DMO) almost a month ago. It looks really small - makes him look even smaller than he is when it's on. A compression suit with specialized panels that are designed to give his body positive feedback and encouragement not to move in certain ways (like scissoring his legs) and strengthen weekend areas like his trunk and core. It only took three weeks from the time of measurement to receive the suit from London. We ordered the nude color, but now I'm kind of wishing I had ordered a color so he could just hang out in it in public without clothes over it, especially since Noah isn't able to regulate temperature, he could easily overheat in it during summer months. And it makes him look naked with it on. But knowing growth will require a new suit in 6 months to a year, it's something I can always change next time.
For the most part it was easier to get Noah into the suit than I anticipated. Although it took me two days to stop having difficulties not zippering his skin in the inside leg seams. Which I feel terrible about. Noah, bless his heart was starting to grow fearful of this suit anticipating that I was going to be pinching the inside of his legs every time I put it on. The first day a child wears it 1 hour, the second day 2 hours, the 3rd day 4 hours and then thereafter 8 hours daily - or until bedtime. This is to measure pressure points and see if any marks disappear within 30 minutes. Any marks that stay longer than 30 minutes indicate a pressure problem that needs to be resolved and fixed with the suit. Thankfully Noah didn't have any significant marks that stayed for a long period of time. His is skin is incredibly sensitive, but the suit seems to do well, although the 8 hour mark is his limit - typically for him 7 hours is about all his body and skin can handle. And he doesn't appreciate it everyday, so I'd say we're up to about 4 times weekly.
He seems to have his normal range of movement while wearing it. He can still roll on the floor as he normally would from room to room. I see him crossing his legs much less with the panels build in and in fact am noticing on day two that his left leg (the one typically the one most likely to scissor) is remaining in a bent and upright position while laying supine. That's a positive for sure. Noah of course can't sit independently with or without the suit, but I can tell propped sitting (with holding one arm) that there is a significant difference in the amount of work it takes for me to hold him up and how he can center himself with the suit on as opposed to off.
I'm also noticing potentially a difference in his sensory gag (a bit early to tell yet) but I think it may be improvement. Self-calming seems to be a benefit, as he appears more relaxed in it. It could take a couple months for me to really know how big of an impact it is having on his sensory challenges. As they come and go frequently and different things set them off - mainly people he feels are invading his personal space, or those he feels will approach him for harm or to touch him. But he does have secondary sensory challenges like touch, and sounds - even dogs barking can set him off. And he hates the sensation of plastic or laying on plastic. Plastic medical chuxs will make him throw up within seconds. And he cannot handle the smells of his own bodily fluids and bowel movements. And sometimes just when I think I've learned all the triggers Noah comes up with something new that upsets him. He likes to keep me on my toes like that. It's not easy, but I am so patient with him, as I can only imagine how hard things are for him.
Overall I'm pleased with the suit. And think it's made very nicely and has a huge potential for Noah and children needing postural support. It's an expensive little gadget, and thankfully it went through Medicaid easily as it is billed under an Orthotic code, which are typically not denied. I'm thankful for the small miracles that come my way with the mounting battles that I have to deal with when it comes to Noah's Medicaid benefits. However, I know of a family in the UK that was recently denied their DMO suit, so it's not easy everywhere. I wish it was. There shouldn't be a child anywhere that gets denied their medical, equipment and therapy needs. There is just never enough help for all that is involved with parenting a severely disabled child. The costs when I think about them make me sick to my stomach, and make tears well in my eyes because I worry about how I'm going to figure out a way to help Noah with all that he needs with what little we have all the time.
Originally I had thought maybe this was a suit that could be passed onto another child when he outgrows it, but that isn't the case with DMO suits, they are so specialized and have so many specific measurements that you'd have to be Noah's twin likely for that to work. I'm hopeful that this will offer Noah more support in his daily activities. At least he doesn't object to it, so that's a huge step.
If you want to know where your heart is, look where your mind goes when it wanders.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.