Made of Gray

Fort Worth Texas

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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Breaking the Streak -- A Night in the ER

Raising the Rare ChildHolly D GrayComment

This past week took us down an old road. It took us to back to the emergency room, a large abdomen, blood in the stool and the realization that making even the tiniest of change to Caleigh's regimen would land us in a place we didn't want to be. 

Last Thursday we picked up and started an increased dose of compounded sulfazalazine medication that Caleigh takes for ulcers. Boston needed to increase the dose for her weight and they wanted to give it to her in liquid form which she would absorb better. We went back and forth with our pharmacist about what the compounded solution couldn't have in it. It was clean of things that Caleigh hasn't tolerated in the past. So we started it. 

One day later, May 8th, Caleigh wasn't feeling great. She had a small amount of bright red blood in her stool and her tummy was getting bigger. We had labs and a urine sample to complete that afternoon anyways, but I called Boston to tell them what was going on. We decided to stop the compound and go back to our regular dose and powder form. They also wanted Caleigh to be seen by a doctor just in case. No one in our GI office would call Boston back and our Pediatrician, who has been great with the transition, said she would see us. Looking at the time though, 4pm on a Friday, she decided to send us to the ER where we could get all the testing done in one place. 

So we went to the ER. We broke our streak. Caleigh hasn't been in the ER, much less the hospital since February 2010. It was a long break and after being in there for a ridiculous six and a half hours we remembered why we avoid it at all costs. Going to the ER was silly really, but I understand that Boston doesn't know Caleigh and they can't take any chances being so far away from us. It took three sticks for an IV just in case she needed fluids, which she didn't. X-rays were fine and so was blood work and urine. We got home around 11pm that night. 

The next morning Caleigh was really sick. Not tummy sick, but definitely head cold, flu-like virus... not feeling good. She slept upright next to me in the recliner most of the day. We slowed down her feeds, rested a lot and dumped tons of saline in her nose to keep things loose. Thank goodness our girl blows her nose like a champ. 

By Sunday she was much better and the one time blood in the stool didn't continue since we stopped the newer version med. It was all just a coincidence of events which is usually Caleigh's style anyways. She gave Eric the bug by Tuesday, I got a few days of nausea and exhaustion and we all continued to generally feel terrible most of the week. 

Boston has decided not to make any other changes other than increasing calories before we head back up to see them. They (and us) don't want to be sitting in the ER and back tracking until we see them again. We're not rocking that boat. 


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Three Weeks Home

Raising the Rare ChildHolly D GrayComment

We've been home now for several weeks and we have fallen back into our routine... if you want to call it that. We don't have a solid schedule and that can make the weeks fly by. 

Caleigh went to a new eye doctor and got a new prescription. A little more near sided and a little more astigmatism. Her new glasses are on the way. 

We did her every 6 month dentist appointment. Everything looked great. 

We went swimming for the first time last weekend. We don't plan on stopping until we are headed to Boston. 

The quick update on Boston is that Caleigh's vitamins and minerals looked much better than they were expecting. We've increased her fluid amount and just yesterday upped her calorie intake to 24cal. We will be increasing her calories over the next couple of weeks and hopefully she will tolerate the change.

If she can adjust to the increase, we will plan on going to Boston in one trip. Head up for pre-surgery testing and then go ahead with the surgery in the same visit. This could be June or July. We aren't certain on timing yet. Caleigh wouldn't need to be on TPN before her surgery in this scenario. 

We're in the process of getting a few supplements compounded and changing home health companies. Boston has been incredible through all of the hiccups in transferring Caleigh's medical care. They get a huge thumbs up so far. 

So the plan is to keep increasing calories, swim and play as much as possible, and truly enjoy our time at home. 


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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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