Little's Life

Little's Life

Monday, January 6, 2014

Adaptive Equipment Thus Far (and tips on how to procure your own)

Little Bit is in his last few days of the terrible, horrible, no good, very bad threes.  I have my fingers and toes crossed that the fours will be better.  In his short little life thus far, he hasn't needed too many pieces of adaptive equipment.  I thought I'd share them all here, along with how we went about procuring them, in the hopes that it helps someone else out in figuring out how to aide their special needs tot.

***Here is my mandatory disclaimer stating that I am not a physician or physical therapist and am in NO WAY qualified to diagnose or recommend treatment options for anyone's child!  I am simply putting out there what we have used and how it has helped Little for you to use as a reference or inspiration or completely ignore or to use however you see fit.***

1.  Hip Helpers:  spandex shorts with a sewn up seam in the center to tighten up hypotonic hip joints.   He wore these for a few months when he was just about a year old, at the suggestion of his physical therapist.  Andrew sat wide legged, with his legs out in a v and these helped to bring his legs together closer to regular hip distance.  They can also help with w sitting and hip rotation in babies with hip abduction.  I did not go through insurance for these, as they were only $16 per pair.  In this picture, Little is wearing them in a size C.  I still have them, if anyone needs a pair in that size.  Click the link above to make sure your baby needs a C and check with his/her pediatrician or physical therapist to see if these are a good fit for your child and let me know via e-mail ( or facebook (link on the right) or by leaving a comment below.

2.  Cascade 3.5 D.A.F.O:  He got fitted for these when he was about 13 or 14 months old.  We were able to get them through our insurance via primary care physician's referral to a pediatric orthopedist.  Cascade makes many different dafos and the 3.5 is the model that both his PT and his Ortho agreed was best for him due to his hypotonia and supination.   Vocabulary lesson time (HOORAY!);

hypotonia  hy·po·to·ni·a (hī'pō-tō'nē-ə)
 A condition in which there is diminution or loss of muscular tonicity, resulting in stretching of the muscles beyond their normal limits.

supination  su·pi·na·tion

1. rotation of the hand or forearm so that the palmar surface is facing upward (opposed to pronation ).
2. a comparable motion of the foot, consisting of abduction followed by inversion.
3. the position assumed as the result of this rotation.

 He began wearing them every time we wanted to try to get him to walk and  once or twice per day for an hour to stretch.     He no longer walks in them, but we are still using the 3.5s (in a larger size, of course) at home to stretch his calves and feet when they are particularly tight.

The casting process.  Look at that little squishy baby!!!!!

Unfortunately, they don't stop wee ones from tipping over.
Finding shoes to fit over these suckers can be difficult and expensive.  I think Little was in a size 4 shoe in these pictures but those New Balance were a size 6 double wide.  I got them at Sears.  You could also go the route of the Hatchback Shoe, which is a special order shoe that has a hinge in the middle.  The shoe bends open in the center so you can slide your AFO or DAFO in then pop the backside of the shoe up over it.  Pro - easy to get on over the orthotic.  Con:  ugly and expensive.  Unless of course, Hatchback wants to send me a pair for free to try out and review - then they're stylish and affordable!  ;)
3.   Potty Rail: 

Built for him by his Pappy.  I wanted a seat he could sit down on and raise himself off of without help and without falling.  This rail has been the perfect solution for him.  If your child has weak thighs or balance issues and is unable to use the adaptive potty seats that fit over a regular toilet (Little is unable to walk up the ladder type steps and then turn himself around on the skinny platform on the medical potty seats available), you might consider something like this.  Inexpensive and easy to make!  His school even had one made just like it to accommodate him in the bathroom located in his classroom. 
4.  Tiger Helmet:   to show off fierceness 
Kidding, of course.
5.  Baby Bjorn:  because they are an AMAZING company with an equally amazing product.  You can read about how we got our grubbies on this one by checking out the post I wrote at the time - ERGOmaniac
When Little outgrows it, I will be passing it along to another family in need.  I haven't decided how I'll choose - but I'm thinking some kind of contest.
6.  Handcuffs:  because, well, toddlers are jerks.

 Again, kidding.  Don't call CPS.

 7.  Special Tomato Height Right Chair:  This is a chair we use in the cafeteria at school. It took the place of old ratty booster seat that was tethered to a scoop back chair.  The Tomato allows Little to sit at the lunch table with the rest of his class and not feel like he is in a "baby seat" or high chair.  The padding all comes off if I need to wash it and the foot plate and seat are adjustable.  I was able to get this 100% paid for by my insurance through a referral from his PCM.  The referrals necessary to his insurance company were to a medical supply company (Pennyrile Home Medical in our case) who came out to the house and took his measurements, recommended products, and wrote their own referral paperwork.  That paperwork and a second referral from our PCM written out for this specific chair were sent into our insurance company who then approved the order.  After word of the approval, the medical store then places the order for the chair.  It only took about two weeks for it to arrive.

8. Ottobock Kiwi Pediatric Mobility Stroller:  This was procured the exact same way the Special Tomato Height Right Chair was.  Keep in mind that the sun canopy and under carriage storage bag are both considered unnecessary and optional, so many times insurance will not cover them. 
Andrew has outgrown our umbrella stroller, which doesn't have enough support for him anyway.  We went to BabiesRUs and tried out a few of their displays and he was too wide or long for all of them!  Little is TINY - so I'm not sure what the deal was there.  The ones I liked all had oval or rectangular style push bars instead of handles, so I was excited to see that option on most of the pediatric strollers.  I like this particular one because it looks like exactly what it is - a stroller.  Some of the other styles just looked so...medical.  We'll get to that one day, but for now, I wanted one that looked like a really nice stroller and that's exactly what I got. 

It is super smooth to push; even Andrew has no trouble with it. I think my favorite feature is the directional push bar - I can push him in the usual forward facing direction, or if I get backed into a corner or he falls asleep, with one quick push of a button, I can flip the handle bar over the seat to push him in the opposite direction (seat facing me). That will definitely come in handy exiting crowded elevators where there is no room to turn the stroller around! Plus if he is asleep, I can pull down the sun canopy to block people out and keep him facing me for privacy.

The front wheels swivel or I can lock them for going over gravel/cobblestone. There is a zippered pouch on the back plus an undercarriage bag. The only thing it is missing is a cup holder (which I've already added) and unfortunately it takes up my entire trunk some have to remember to leave it at home when I grocery shop. Anything requiring the stroller and luggage or purchases or anything else will mean I'll have to use my husband's car, which means switching over the car seat.

But I am so SO grateful and excited to have it!!!

9.  Cascade 4.0 D.A.F.O.:  this is the one we'll be getting shortly (as in the very next time we go to his PCM).  Andrew's rotation has switched from supination to pronation as his ankle muscles weaken. 


1. rotation of the hand or forearm so that the surface of the palm is facing downward or toward the back (opposed to supination ).
2. a comparable motion of the foot consisting of abduction followed by eversion.
3. the position assumed as the result of this rotation.
4. any similar motion of the limbs or feet of animals.
He will wear these while at school or whenever he will be doing any kind of extended walking.  I have no idea what size shoe he'll have to wear over them, but I can bet it'll be another double wide.   We'll be headed over the brace shop for yet another fitting in a few weeks.  He's an old pro at them by now. 
10.  Physical Therapy and Occupational Therapy:  really, I should have listed these first since he's been doing them since he was 13 months old.  We started off with our states free birth to three, early intervention program called Kentucky 1st Steps.  His PCM put in a referral and KY 1st did the rest.  They came out to my home for every evaluation and session from the time he was 13 months to 3 years old.  At 3, 1st Steps turns you over to the school system for services.  Andrew has been in preschool since Jan 2013, a few days after his third birthday.  He receives 30 minutes of PT and 15 minutes of OT each month.  That is not enough for him, but it is all the state can provide.  Because of that, our incredible therapists kept him on as a private client (again, try your insurance - the worst they can do is deny you.  You'll never know unless you submit a referral).  He now receives PT twice per week for 45 min each time and OT once per week for an hour on top of what the school can do for him. All four of his therapists are on the same page - I even brought his private PT to his IEP meeting at the school last month.  The referrals constantly have to be renewed, and evaluations resubmitted, but every bit of paperwork and waiting room time is worth it to have the services he needs.
And that's it so far!  I think we're incredibly fortunate in that we haven't needed a whole lot yet and that we've been able to get everything we have needed pretty easily.  I know how blessed we are to have this amazing insurance plan through the Army and I also know that we will not have it forever.  In fact, it may be coming to an end pretty soon, but that's a blog post for another time.  I hope I've helped some of you out a little bit, or given you a bit of  insight for what services and equipment you might consider for your son or daughter in the future.  I am always on the lookout for new products to make Little's life a bit easier ( I choose to be proactive) and as I come across them, I will continue to pass the info on to you.
I hope you all had a wonderful holiday season and I wish you a year full of blessings!  Put your faith in Him and God WILL provide!  Proverbs 3:5- "Trust in the LORD with all thy heart, and lean not on your own understanding: in all your ways acknowledge Him, and He shall direct your paths."
*thank you, Pintrest for the sweet tree/car idea*


  1. I love reading his progress, think about you guys often!!!

  2. Hey Kathy Jones! Lance directed me to your blog from a FB post of yours. What a handsome little guy you have. I have loved reading through your posts and looking back on your journey so far. The strength and determination for your boy show through your words and it's very inspiring for me to read. So glad to have an opportunity to peak into your world. Happy 2014!

    1. Well thanks! You are pretty inspiring yourself, Carmen. You show such strength in your writing about Crosby. Happy 2014 to you, too!

  3. Hello, I was hoping you could answer a few questions for me. I've been searching for info and your blog popped up, and I thought why, not? Lol. Anyway my name is Alexis. My brother passed away nearly 11 years ago from DMD. I never worried about my children having DMD. Well now I've got a son and I'm pretty much terrified. He will be 2 next month. I was just wondering when your little man started showing signs. My brother started showing signs before he was 2, but it's been so many years (he would be 33 this year) that my mom can't quite remember details. I had a ck test done when he was 2 months old and it was 3,000. I took him to the MD clinic, and they took some blood and basically it was inconclusive. However that didn't deter the doc from telling me he had it. He said the only way to know for sure was a muscle biopsy. I said no freaking way. Well here we are almost 2 years later. He isn't really showing any signs that I can tell. He crawled between 6 and 8 months. Starting walking around 15 months. I honestly have no idea what to look for. His pediatrician wants to do another ck just to see but I am on the fence. I was hoping maybe you could give me a little insight/encouragement. Thank you! By the way, your family is beautiful!

    1. Oh and my email is

    2. First - I am SO sorry that here it is 2 months later and I am just now responding to your comment! I have been busier than usual these past few months and have been a pretty poor blogger!
      Second - I am sorry for the loss of your brother and the fear you carry about your own son. My son started showing signs at just a few months old, but they were subtle. People kept telling me that he was just taking his time and babies develop at their own rate and and blah, blah, blah. I knew, though. I just knew. Not Duchenne, of course, as I had never heard that word before in my life, but I knew there was *something* off.
      At 6 months, he was not rolling over, not trying to hold his own bottle, still very rag doll-ish. At 9 months, he still had a head lag, could only roll one direction, still held his hands in the balled up position - that kind of thing. His ped put in neuro and genetic referals then. He didn't crawl on his own, he learned it through PT. He didn't walk until 5 weeks before his 2nd birthday, again through PT. I believe Andrew was/is on the weaker side of Duchenne.
      Third - Yes, you absolutely CAN diagnosis DMD without a muscle biopsy. Andrew hasn't had one. His geneticist sent a blood sample out to Emery Labs in Atlanta and they sequenced it for dystrophin. I have his exact mutatation mapped out just from that blood test. I won't put him through a muscle biopsy unless completely necessary. Go do the next CK check. If it is normal, then great! If not, then ask him to send blood to the lab. There is no point in walking around terrified when you can have your answer with a simple blood test.
      Fourth - Thanks for the compliment and for checking out my blog! I usually get back to people MUCH sooner than 2 months. I hope to be back to blogging very soon! Good luck with everything and I'll be praying for you two that your son is just fine and healthy!


  4. what a doll he his, that tiger helmet picture cracked me up.