Made of Gray

Special Needs

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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Homemade Laundry Detergent for Sensitive Skin

Adaptive ProductsHolly D Gray57 Comments

Hi, my name is Holly and I have crazy sensitive skin.

I can only wear certain types of make-up and I can barely wash my face with anything. It's a mess for a thirty one year old woman with mad amounts of acne. I just want to cover it all up, but I can't. Trust me it's รผber cool looking.

Eric has even more sensitive skin than I do. Years before Caleigh was even born we figured out that he was reacting to perfumes in our Tide laundry detergent. We switched to All Free and Clear at that point and things seemed fine. He would have frequent flare-ups, but we would blame them on the environment at large. He even had some trusty steroid foam to calm things down.

Flash forward to our ever so sweet daughter and you've got some of the most sensitive skin around. Caleigh is definitely a combo of her parents. Her allergic reactions and sensitivities are on her medical file, and weekly I have to list them at whatever appointment we might be at.

Tape Adhesive is listed as one of her allergies. Caleigh gets huge whelps at contact with the adhesive used in medical tapes. Even band-aids tear her skin up. When Caleigh was smaller her skin would break down eventually, but not right away. At this point it takes even a cute sticker from the dentist one minute of skin contact to cause swelling.

Like me, we can only use a few products on her skin. So when she was a baby, and having skin problems, we switched from All Free and Clear to Seventh Generation Free and Clear. I thought it really worked well, but I got tired of spending $20 a bottle on it.

I've been making my own house cleaners for almost ten years now. Every now and then I will buy a Seventh Generation product, but it doesn't happen often. Basically our house is cleaned with baking soda, vinegar and hydrogen peroxide. Our laundry soap was the final hold out. So I started searching Pinterest. I wanted a laundry soap that didn't have Borax in it. I've read conflicting information about it so why chance it? 

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I found a blog called Delightful Creations where she gives some great tips on making your own homemade laundry soap without Borax. Her recipe calls for baking soda, washing soda and castile soap.

I've used castile soap in the liquid form to make some of my more elaborate homemade house cleaners, but I've never used the bars before. There are several organic scents to choose from. I always come back to the peppermint though. It smells so clean.

I've actually been using this recipe for a little over a month now. I originally made a small batch to test it out. I am beyond thrilled with how this has turned out. We just thought our clothes were getting clean before!

Caleigh has some serious stains. G-button, Elecare, Diaper leakage..... you get the point. It's like being a contestant on Wipeout over here. So when I noticed that I was barely having to pre-treat stains I got all kinds of giddy. I do still use Ecover Stain Remover. I've used it for years, I love it and I probably won't stop using it, but now I am needing much less of it.

The smell is so fresh. I love the smell of peppermint though so I may be a little biased to the wonderful scent of my laundry room. For years we've used free and clear brands, no softener and no dryer sheets because of our sensitivities. So to have a smell other than wet and sweaty clothes is pretty life changing. The dried and finished laundry is so much cleaner than it used to be. The word crisp keeps coming to mind.

I kind of like doing laundry now. I still hate folding and putting it all away, but I enjoy the doing much more now that I made our own soap. I guess it's something about pride in ones work or the fact that I saved our family tons of money by spending thirty minutes making our own detergent. Either way, it's a keeper.

I found my soap bars at Whole Foods, on sale for $3.49 each. The large bag of baking soda comes from Costco. It's about $7.00 and there is plenty left over. We buy a bag or two of it each month anyways. The washing soda was about $3 and I needed 3 boxes for this recipe. Also, the only place I could find the washing soda was Wal-Mart. So for around roughly $30 we will have laundry soap for 3-6 months depending on how much we use in each load and how big the loads are. The original post suggests only using 1/8 cup to make it last for a year. I've got my 1/8 cup in the tub, and I usually put two of those in for good measure. Even so if I made a couple of batches of this, that would be a savings of roughly $190 a year.

I'm pretty excited about the fresh and crisp potential here. Happy washing!

UPDATE: 10/5/15 -- I still make this formula every 3-4 months for our family and I love it! Check out the comments for more ideas and suggestions when making your own laundry detergent for sensitive skin. 

PRO TIP: If you have a food processor, definitely use it for grating the castile soap into teeny tiny crumbs! 

My exact measurements for a 3 month supply:

16 cups baking soda (1 13.5 lb bag is plenty for this recipe)

12 cups washing soda (This is a little less than three boxes)

8 cups of grated castile soap  (1 bar of soap makes 2 cups)


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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The New Beach Destination

Raising the Rare ChildHolly D Gray2 Comments
Where am I writing you from....you may ask? Not Pittsburgh!

Caleigh has decided that her new favorite destination is Cook Children's Hospital. Yep you read right......were back. Yesterday, about noon, I took Caleigh's temp. It was 99.6 degrees. I uncovered her and then the ECI people came out to do their evaluation. Around 2:40 or so I took her temp again, when they left, and it was 101.00 degrees.

Now let me explain something here.... normal baby you would call the Pedi and give Tylenol, watch the temp. Any kiddo that has a central line, aka Caleigh, this means serious business and a possible blood infection. A blood infection could mean that we would have to pull her central line, which is considered her life line at this point. Bad News......

Gave Caleigh some Tylenol. I called our GI doc and told him what was going on. He of course said to go to the ER, and after some crazy packing, Eric rushing home from work, my mom holding Caleigh while I accomplished the crazy packing......we finally arrived at the ER about 4:30. Just in time to beat the Friday 5pm rush. It's funny because a lot of the staff remembered us. Especially when we explained that our GI doc is really Caleigh's primary doctor. We got in without a wait and started telling the whole story to everyone that asked. I think I should just give them the blog address! I've actually been working on a medical history summary that we can just hand the admissions people, but I haven't been able to finish with all the admissions we have had to do! Another thing of interest, the ER is swarming with firefighters, all of which are paramedics. Each time we go it's like showing up to a firehouse, it's nice and makes us feel more comfortable and at home about the situation.

Ok, so I got off rambling, anyways they started tests, we did a chest x-ray (Caleigh hasn't kicked the cough since our last visit) and then we waited for our GI doc to come. He came about 7ish and ordered some more tests, told us not to cancel our trip just yet and (most exciting of all) gave Caleigh a new G-button. The old one had been in since January and we had been having so much trouble with it leaking. When he showed up it had started to bleed around the stoma, she was in pain and I told him to please do something about it. He went and got a new size 15 french 1.5cm (old one was 18 french 1.7cm) and swapped it out just as easy as can be. It's the weirdest thing seeing a hole in someones stomach, especially your own child. And presto! Just like that the hole was plugged and NOT leaking a bit! I'm so excited about it I could just scream!

So our doc decided that since Caleigh is medically fragile (one of many labels), he should keep her in the hospital at least until the preliminary results from the blood cultures come back. They did start her on two different antibiotics, Vancomycin & Rifaxin, just in case there is some kind of infection. So the cultures are sent to the lab where they are watched to see if anything bad grows. They come back at 24, 48, & 72 hours. If nothing has grown in 24 hours, which would be 6pm tonight, then we will be discharged and sent off to Pittsburgh. Of course, if something does grow then we will be hanging out at our new destination spot a little bit longer.

My thoughts are that Caleigh hasn't got rid of her cough which makes me think sinus infection or something like that, but with her line we just can't take the chance. Her fever went away by midnight last night mainly because the antibiotics were kicking in. She's fussy and acts like she doesn't feel good, so it's definitely hard to tell what is going on.

*As I was writing, our nurse came in and told us that the preliminary came back with gram positive bacteria. We will still have to wait and see just what kind of bacteria it is that is growing. We're waiting on our doc to come by and give us a game plan. As of now, Caleigh is getting good antibiotics and now we begin the waiting game at our new beach front property.

As soon as we know more, I''ll let everyone know!


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