EB Awareness Week 2014 ~ Day 3 ~ Some Wounds Don’t Always Heal With Time...(GRAPHIC PICTURES)

...it takes thinking outside of your comfort zone! 

Some wounds don’t always heal as quickly as they should & some wounds don’t ever heal at all! Bianca’s type of EB is called Recessive Dystrophic Epidermolysis Bullosa. She produces very little of the “glue” that holds the skin together so her skin can be as delicate as onion paper or a butterfly’s wing. With the incorrect way of healing you can easily destroy it by the slightest touch. Think of grass that has no roots…how can it bind to the soil without any roots? Or like Velcro missing the rough hooks on one side that does not adhere to the soft loops on the other.

I have taken into account how important it is to keep a close eye on wounds. When nutritional intake is diminished due to blistering of the mouth, esophageal strictures & discomfort of any sort these wounds can take a lifetime to heal. As some of you know this past summer Bianca had her 2^nd esophageal dilatation. It was something we pondered over & over for months before she was adamant in moving forward. For more than an entire year she had these excessive wounds on the back of her thighs that would stay open for weeks, heal for days & then breakdown all over again. This was a vicious & malicious cycle that had no ending in site. Today these wounds have finally closed up & she is doing much better in these chronic areas. She still has breakdown but not like before. I’m not saying we will be like this forever because we never know what could happen the day of tomorrow. Although I pray day in & day out that we do have closure for at least a year to give the area enough time to build some resistance. What I am saying is that I am thankful for today, right now, this minute that we were able to see these areas close up for more than a few days & have some level of comfort. Comfort is very rare with EB – as rare as EB itself. So these little spurts of closure in persistent areas of wounds are welcomed!

This is life with EB – we have to find the smallest piece of hope to fully understand what it’s like to be grateful for the little things in life!

It’s important to remember that EB is RARE…is NOT CONTAGIOUS…it’s GENETIC…it affects ALL RACES…& most importantly for this moment it has NO CURE!

I am attaching a diagram that gives you some basic details on What Is EB released by debra international. It’s a wonderful layout & drives the point across!

FRIENDS & FAMILY ~ For EB Awareness Week 2014 how about posting a picture of Bee (& yourself if you have it!) & hash-tagging it with #ebonourterms, #buttersbee & one of the following plus tagging her or us if you are a part of our social networks: 

#HealEB #CauseTheWave #EBRP #EBWeek #EPIDERMOLYSISBULLOSA #RDEB

~*~*~GRAPHIC PICTURES BELOW~*~*~


Bianca's Wounds Back In October 2013

Bianca's Wounds Today October 2014

One thing to point out is the last picture on the second row. I took it w/a gray/purple tone to show that while a wound is healed it will forever show up as a purple spot when she's cold because of the trauma caused in the area by a wound/blister. For those that know me usually know I freak out when I hear a spot that has never been injured get damaged - this is the reason why...

She is the reason to keep on living! Always will be! My Butters!

EB Awareness Week 2014 ~ Day 1 ~ Good Morning Sunshine...

It’s the start of EB Awareness Week! And it’s time to Cause The Wave! For the start of the week on EB Awareness let me fill you in to some of the comments, statements or conversations you will only hear in a household that deals with EB – specifically RDEB (Recessive Dystrophic Epidermolysis Bullosa).

In the morning:

“Hey baby good morning. How did you sleep?” - Me

“Good mom…but I was hot again & my hand hurt so I took off my wrappings. Is that okay?” -Bee

“Sure but remember you need to keep them on for a little long so we can save the web-spaced. Go take care of yourself while I prepare your Boost.” –Me

“Why are you limping to the bathroom?”-Me

“My foot is asleep mom & the heel hurts. I hanged it on the side of the bed to get the blood flowing but it didn’t work. Don’t worry once I put on my shoes they’ll feel better.” -Bee

“I hope so! Please do the hand scrub to remove all the dry skin…” –Me

Between 10-15 minutes we’re both doing our own thing…then back to her room for a once over of the bandages done the night before. This part can be quick or it can take a lot longer than expected due to open wounds healing and draining overnight.

“Bianca the bandage here drained a lot & this is stuck over here – you didn’t feel it during the night?”-Me

Blank stare…then a head nodding no – moving on…

“What happened to the bandage from our neck? Your hair is all stuck to it now! Do you want me to cut it or soak it?”-Me

“Let me see mom…soak it! Don’t cut it please…” –Bee

20 minutes later we’re out the door after an hour and a half since getting up. Pretty long time to get ready in the morning don’t you think? And this is on a good day! On days where we have a higher percentage of wounds to tend to we could be there for an extra 30-40 minutes. This makes us all late and taking almost two hours getting ready for school.

 “Okay let’s move it we’re behind again…”-Me

In the car… 

“Bee here’s the lip gloss & lotion for your hands, please put it on to help the dry chapped skin…”-Me

“Did you put it on?”-Me

“Yes mom! But now I can’t swipe my screen because my fingers are slippery.”-Bee

Getting to school I gather her materials and she walks in, limping, all the way to the front office. We settle, I give her another once over sometimes needing to reapply a bandage or two that has fallen. A hug, a talk and a kiss and finally she’s ready to start her school day. In between all this I have to make sure to reinforce the things she needs to accomplish for the day at school. Ask questions on assignments you don’t understand, sign up for whatever event you spoke about the night or day before you’re interested on, pay any fees due for the clubs you are a part of and most importantly pay attention in class to the new lesson to make sure you get it!

Throughout the day I often text the nurse once maybe twice if it’s an extra wounded kinda day. We keep connected, sometimes, maybe too connected. But this is what it takes to keep her whole & mainstreamed within society’s requirements. Not an easy task but we manage!

Fast forward to the afternoon when she gives me a ring at the office…

“Hi mom…I’ve been picked up!” –Bee

“Great! Everything good?” –Me

“Yea…” –Bee

“Okay. Try to do some of your homework before I get home so we can have time for bandages.” –Me

“Sure mom I will try but can I take a break? I’m really tired?” –Bee

“Try and read if there’s anything to read for homework, okay? We need to go to bed at a decent time.” –Me

Tomorrow I’ll fill in to the evening routine which is usually what makes our days extra lengthy.  In the meantime get to know what’s helping us Cause The Wave ~ they are known as the EB ResearchPartnership. Click here and "LIKE" their Facebook page to stay on top of their latest events & developments ~ EB Research Partnership Facebook. What they are doing in the name of raising awareness, funds & hope is amazing! Eddie Vedder from Pearl Jam is one of the founding members & currently he has an amazing auction going to raise so much needed funds for EB research. Go over and check out #healeb with Eddie Vedder on Crowdrise! And use those hashtags people! They really connect us with the rest of the world!

FRIENDS & FAMILY ~ For EB Awareness Week 2014 how about posting a picture of Bee (and yourself if you have it!) & hash-tagging it with #ebonourterms, #buttersbee and one of the following plus tagging her or us if you are a part of our social networks: 

#HealEB #CauseTheWave #EBRP #EBWeek #EPIDERMOLYSISBULLOSA #RDEB

Let's make it a memorable awareness week!!!

Heading Out To School!

First Day Of Middle School

Taking A Quick Breather Before
Heading Into School