Monday, October 28, 2013

Little Things Just Little Things...

It's EB Awareness Week! 

In the name of creating awareness about the condition my beautiful daughter deals with on a daily basis I'm just doing a real quick blog regarding a few items around the house that buys us more quality time. Some might seem so minuet while others are crucial to our every day lives...okay ready...set...here we go...
Item: Liquid Ranitidine (Generic Zantac)
Why It's Needed: Allows for the acid reflux that is in her tummy to stay down. Those dealing with EB are on a very high liquid diet. All this liquid tends to sometimes come back up and erode the esophagus, in other words internally damage it just like the outside skin. Causing blistering that close up the esophagus or creates craters where food gets lodged in causing further damage. 

Item: Wound care supplies AKA The "Fun" Box
Why It's Important: Every single piece of gauze, primary bandage and supplies needed for Bee's skin to be at it's optimal care comes in this box every single month (or every other month during cooler weather). Receiving this box at our doorsteps feels EXACTLY like winning the lotto! Actually it feels more like winning a battle against the War of EB over and over again! Without these items Bianca would not be doing as well as she does today. Thanks National Rehab!

Item: Hanging pieces of Mepilex Transfer
Why It's Funny: I'm not sure about everyone else but in our house we tend to find these guys in all shapes and sizes hanging out somewhere. Here is a collection of the ones that are usually between Bee's fingers every night hanging out in our bathroom. As she gets herself ready in the morning she likes to make the bathroom vanity the "holding area" for these guys! Easy reference point I guess...but they're important! ;)

Item: Pump Dispensers
Why It's Essential: These simple items provide independence for Bee. It allows her to easily dispense the conditioner, shampoo and body wash so she can calmly take a shower and have control over some aspects of her life! As I've said before it's the most minuet things that give her freedom.

Item: Boost Nutritional Supplement
Why It's Crucial: Bianca eats very well for someone that is dealing with internal blistering and wounds. However there are many times where she can go a couple of days eating in such discomfort that only a liquid diet would suffice. This is where a supplemental product like Boost comes into play. I mix this up w/Coconut or Almond milk along with some Ovaltine to compensate for the calories she might not be ingesting during a bad spell. Thankfully this has been a major life saver for her and has kept her at an acceptable weight for as long as I can remember!

Item: RefreshPlus Eye Drops
Why It's A Must: One of the first layers of our precious eyes is made up of protein...Bee lacks protein...hence her eyes are also involved in the realm of EB. During the night hours many with EB tend to get corneal abrasions and tears. This is why having these eye drops administered religiously is vital in the care of EB. One bad night can turn into several dark, painful and frustrating days. 
So this is it for now in a nutshell! There are so many other items I can share with you so those that do not know can gain a better understanding to what we deal with every day. What can take someone one or two steps a day can take us ten to fifteen. And that's on a really good day...


Pumpkin Patch 2013 ~ Bianca

“Embrace your suffering, and let it reveal to you the way to peace ~Thich Nhat Hanh

GET TO KNOW EB:
www.debra.org, www.ebmrf.com, www.ebnurse.org, www.thebutterflyfund.org, www.butterflysandbandages.org/, www.irefuseeb.org, www.eb-awareness.org, www.eb-resource.com, www.blog.ebinfoworld.com/
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