Made of Gray

Adaptive Products

How To Keep A Cast Dry In The Shower

Adaptive ProductsHolly D. GrayComment

As soon as we found out that Caleigh was going to have fiberglass leg casts; I knew that we had to simplify her already time consuming shower time. I have fond memories of my brother's arm cast. It stunk in the general six year old boy kind of way and definitely got wet often. I remember taping black trash bags to his arm for showers. Since Caleigh is so sensitive to tape adhesives this was the last resort approach. There had to be a better way to shower while keeping Caleigh's casts dry....

So I went shopping on Amazon and found the Seal Tight Freedom Cast/Bandage Protector.

Genius. 

How to Keep A Cast Dry In The Shower via madeofgray.com

How to Keep A Cast Dry In The Shower via madeofgray.com

I ordered the Pediatric leg length, but for Caleigh's little legs I could have ordered the pediatric arm length. You can see in the image below how much length is left over. I could wear the darn things. 

For ten bucks a piece and prime shipping it was totally worth every penny. We pop the membrane on and over each leg cast and start showering with no worries. 

So far we've had no issues with leaks or with the membrane being too tight. It's amazing when we find products that can simplify and speed up daily tasks. I tend to fall in love and shout from the roof tops. 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 


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Little Hairy Dog Costume

Adaptive ProductsHolly D GrayComment
Little Hairy Dog Costume via Hacking Disabilities

Earlier this month I asked Caleigh what she wanted to be for Halloween. With her iPad and Proloquo2Go she typed out "little hairy dog." 

This was big news in our house because Caleigh has wanted a version of a fairy for the past three years. I have no clue where the idea came from, but I'm so glad she got creative. 

So it had to be hairy. Dalmatians, or any other random puppy wasn't going to work. I did a quick search online and found a lot of scary werewolf costumes and one cute werewolf costume from Pottery Barn. I ordered it pretty fast because Pottery Barn is known for their out of stock disappointments. I went online and ordered some brown tights and a brown t-shirt, created a bow and called it good. 

Little Hairy Dog Costume via Hacking Disabilities

She had the best time this Halloween. I updated the Halloween page on her iPad. She could tell everyone Happy Halloween, I'm a Little Hairy Dog, Trick or Treat, Thank you, I'm having fun, I'm bored. I also added sounds that a dog could make. Caleigh repeatedly said "Woof Woof" "Aaaaar" and "Aooooh" all night long and practiced heavily for days leading up to the big event.  I love adding sounds to her words and frankly she loves using them. 

Little Hairy Dog Costume via Hacking Disabilities

This was the most interactive year of trick or treating that Caleigh has ever had. Something about dressing up helped her break through the shyness. I love progress! 


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4 Easy Steps - Homemade DIY Ice Packs

Adaptive ProductsHolly D GrayComment

When it comes to homemade ice packs our family knows the ropes. Caleigh has been using a feeding pump to get her daily groceries for over eight years now and in that time we have gone through some serious ice packs. We have to keep her Elecare Jr. formula cool at all times. So finding a great ice pack was definitely on my list of things to do for years. 

We've used the commercial kind that came with her monthly supply of TPN in the past. We've used the regular soft store bought version only to be annoyed when they leak goo everywhere. The hard shell ice packs work, but they are too heavy and just don't mold to everything in her backpack. 

Who knew an ice pack could change your day? 

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I stumbled on this DIY ice pack several years ago, and quite honestly it was probably on Pinterest. I just made another set of them before our Boston trip and I couldn't be happier. 

So I've decided to share with you! Sharing is caring after all. 

All you need is Blue Dawn Liquid SoapZiplock Bags and your freezer. 

1. Take your Blue Dawn Liquid Soap and pour it into the freezer bag until it is a little less than half way full. You don't want to over fill the initial bag. 

2. Seal your freezer bag really well. FYI - Using the freezer bags that zip with a slider work just as well. 

3. Take another freezer bag and double up on your plastic protection. Trust me on this. Dawn soap is great for cleaning and smelling fresh. It is not so great when massive amounts of it have busted and oozed everywhere. Double up people. 

4. Take your complete bags and place them in your freezer. Depending on your freezer these will take six hours or more to completely freeze. Ta-da! 

Like I said, we use them daily in Caleigh's feeding backpack. During the summer months we trade them out every six hours or so because of melting. They are very similar to the soft blue gel ice packs that you buy in the store, but they hold up better in my opinion. So much so, that I used my first batch of DIY ice packs daily for 3 years before making this set. The only repair made during that time was adding another Ziplock layer for leakage protection. 

Happy Freezing Folks! 

Do you have any ice pack tips or questions? Let me know in the comments! 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 

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When is Your Kid is Too Big for a Stroller?

Adaptive ProductsHolly D Gray4 Comments

While I was coming up with a post title it hit me that my eight year old was being pushed around in an umbrella stroller, for a week, while we were in Boston.

This isn't a special needs stroller either. 

She's eight years old. It hit me pretty hard. Eight is too big for a stroller. 

Dignity tells us that she should be in an appropriate wheelchair that fits her needs. 

For safety and comfort we decided within four days of our trip that we were going to take our old umbrella stroller with us to Boston instead of Caleigh's manual wheel chair. There was no way we were going to make it an entire week of walking and train rides in the chair that she was already hanging out of. I quickly looked up the weight limit on the stroller and as luck would have it we still had two pounds to go. Golden. 

After a test run at home, we found out that the width was just a smidgen too narrow for Caleigh's arms. So I went searching for something to protect her skin from the bars. I found memory foam Bell Seat Belt Covers on Amazon that ended up being a perfect fit for the stroller, TSA Cares seat belt and now at home, the Special Tomato Chair and Chariot Bike Trailer. I ordered two. I plan on getting more because we can seriously use them anywhere. Since the stroller has a mesh type of plastic on the seat I went searching for a seat cushion. After doing some measuring I decided to try my hand at the Tivoli Couture Memory Foam Stroller Cushion. It fit the umbrella stroller perfectly and made me feel a little more comfortable about taking the stroller instead of the wheelchair. 

Using a stroller instead of a wheelchair brought back a lot of emotions for me. I remember the intense wanting of Caleigh's first wheelchair. I wanted life to be easier for her. I wanted other kids to see her as a three year old instead of a baby. So when I decided to use the stroller my mind went to the "walk" tumblr page. Thank goodness it hasn't been updated since 2011 when the heat of parents pushed it off the scene. I would have gone internet crazy if my child ended up on a too big for a stroller casual post. 

Overall this is my take away... The general public tends to treat individuals that use a wheelchair with respect... or pity and with more age appropriate comments. Add a communication device that is working well and you definitely feel the respect. Caleigh is small for her age. Even so, she is treated like a person who understands the world around her 90% of the time when we are out and about. The stroller changes that perception. I overheard a handful of children telling their parents to "look at that baby." I sent a evil eye to a father trying to calm his crying toddler down by saying "look, that baby isn't crying. Why can't you be more like that baby?" If he only knew. 

The baby perception is huge in a stroller. 

Sure the feeding tube gives away a lot of what is going on when you take a second glance, but Caleigh isn't hooked up to her tube 24 hours a day. Her AFOs might speak to someone else. There are visible signs of disability, but to a quick glance the baby stroller stereotype is there. The stroller even confused TSA agents on our return flight home when they asked Caleigh to get out of the stroller so they could send it through the x-ray machine. 

I'm not going to lie though, it worked. I'm proud that we adapted to what needed to be done. Caleigh came home without sores, continued strain on her spine and a week of me crying over her positioning. She got in over 30 walking miles, whiplash inducing cobblestone streets, bumpy train rides, stairs and a few naps in the stroller. We joked that the stroller had been resting up in the attic for our marathon week of go go go. 

We're in the middle of an epic battle with insurance that will go down in history as one of the most ridiculous waiting periods in all of 2015. In March of this year we decided it was time to start the process of getting a new manual wheelchair for Caleigh. She had started growing with recommendations of Boston's CAIR team and we knew she was going to continue. 

Months later the paperwork was finished. Doctors had signed on the dotted line. Therapists had added their two cents. Caleigh's custom molded seat had been well.... molded to her body. The submit button was pushed. 

Shockingly United Healthcare approved the "majority" of Caleigh's wheelchair. They denied the push handles, hand rims, arm rests and a few other items. This is HUGE though. Not once in the eight years that we have had UHC have they approved a piece of equipment.

Good news, right? Well, the way that the DME company works is a bit tricky. They get an approval, order the equipment, deliver the equipment and have the parents sign a form basically saying that whatever insurance doesn't pay they are responsible for. Then they bill insurance. Then they bill the parents. 

Caleigh has Texas Medicaid as a secondary insurance with the Medically Dependent Children's  Waiver Program. Medicaid typically picks up what UHC doesn't cover. This has been the biggest blessing our family could even think of having. If we didn't have this my friends, we would be writing to you from a cardboard box. They've covered every piece of equipment and medical treatment that UHC has denied over the years. 

Suddenly we have a problem with Medicaid though. They have denied Caleigh's wheelchair twice now. Both times stating that her current chair needs to be repaired. There is no repair for an outgrown frame and seating system. Can't be done. We also received a denial for speech therapy the same week. That has since been resolved, but I swear were on the black list somewhere! 

We've been assured that the new wheelchair is being ordered anyways and it will be delivered, Medicaid approval or not, before Caleigh makes her debut as a flower girl in her Uncle Heath's wedding. 

This has struggle has been heavy on my mind for months now. I'm grateful to be able to choose a wheelchair for Caleigh and have insurance that covers her many needs, but at the same time I'm looking forward to the day she is scooting around in her new chair and not her old "baby" stroller. 

So what would you have done? Would you forgo the age perceptions and went with the stroller or would you have pushed through with the outgrown wheelchair? I'd love to know! 

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