Oh ~ It’s Just A Skin Condition…It Will Go Away!

Well so far everything I’ve blogged about has been pretty much on the up and up. Today I’m going to take it down a notch and put some “not so happy” facts & pictures (but I’m always thinking positive so you might see this turn into a “happy” post)…so this is your fair warning to close this page out and to not read on…but if you are interested in finding out more about Bianca’s Adventures in our world then read on…but don’t say I didn’t warn you.

So many times when I’ve said my daughter has a skin condition people always seem to assume she’ll be fine or it will go away as she gets older. As positive of a person that I am the real truth of the matter is that it will not go away. Yes she’ll be fine but not because her skin disorder will disappear as she gets older. She’ll be fine because we’ll teach her how to handle herself, how to make the right decisions for every day tasks like eating, brushing your teeth, washing your hands, cleaning your face, taking certain medications, doing routing wound care – in other words personal hygiene & care. Plus we’ll teach her that she’s not alone in this world when it comes to EB. We will make her aware that there are, by far, many people out there also dealing with different conditions – be it physically or mentally. I always take a moment to point them out to her on TV or in the real world – just so that she can see she’s not the only one dealing with a special condition.

When Bianca was born she was missing skin from the top of her knees to the bottom of her feet. She was also denuded of skin on her right hand. Plus a wound on her lower back the size of a silver dollar & not to mention the involvement in her mouth. We had our work cut out for us when we brought her home. They did skin grafting on both legs so that she could have the upper hand in the wound healing department. Her healing ratio after 3 months was that of someone whose wounds have been healing for 9 months with 30% closure. This played a major role in getting those areas of her legs healed up to avoid infections like pseudomonas.

As time has progressed we have learned to pick and choose our battles against this never ending war with EB. Our philosophy pretty much is if it doesn’t bother her than it doesn’t bother us. So if she has a limp on her left foot because it is clubbed but she can still get around with no complains then why put her through the ordeal of surgery after surgery? With the possibility of the skin in that area either taking months/years to heal or never healing again? Right now it’s been a close/wound-free area for years. However, that frame of mind will quickly shift if she’s coming over repetitively complaining about pain and discomfort. But for now the risks of putting her under is not worth the trouble. Same goes for her mouth – yes she has some involvement and yes it looks real bad sometimes – but honestly she’s gone weeks even months without having food stuck in her throat. And when it has happened is because Bianca was being her usual demanding and determined self and she took a bite of something hard, sharp and not easy to swallow. The simple fact that she’s super active and is currently in a normal weight/height range is proof enough that we can hold off on any surgeries just a bit longer ~ taking a moment here to say **Thank You God, Jesus Christ & The Holy Spirit for allowing us to go so long without a dilation or any other major medical procedure, Amen** .

The amazing part is that even though Bianca has faced or is facing so many obstacles she still manages to put a smile on our faces every day. She’s a normal child with a skin condition, but she’s a normal child. I am sure those that know her will agree she has the energy to keep going, to not back down…such a zest for life! As I’ve been told before by someone who has the same type/sub-type of EB as Bianca (and who’s also a mother/wife/daughter/friend) “Bianca has spunk”! And that is something that, along with her “skin condition”, will never go away!

By the way have you joined the movement? If not click here - Refuse To Settle For Anything Less Than Butterflies

Here are a few clinical pictures so you can see how a “skin condition” is not so simple sometimes…

Bianca's Legs/Feet At Birth

Bianca's Legs @ 6 years old

But through it all Bianca always manages to live a great life filled with lots of love, hope & faith!

Let Me Introduce You To...

~Bianca passed out after her 1st birthday celebration~

In honor of EB Awareness Week I would like for you to take a moment and read the story of the inspirational Pat Barbrey. This is the one story we read 8 years ago that really put things in perspective for us all! While most of the information out there was informative the majority was very very bleak regarding diagnosis. I always held out hope for a more positive story filled w/hope, dreams come true and a little humor! If you know me I'm always trying to look for the positive in even the biggest negative!

That's when we stumbled upon the following story:

Pat Barbrey ~ Born in the '30s & lived 65 years to the fullest possible!

Pat's daughter, Gena, has been so influential in keeping her mother's memory and inspiring story alive! I cannot believe the determination in this family...it reminds me of the one I am blessed to be a part of today!

Today once again I stumbled upon yet another one of those stories that lifted me up to highest high! I saw pictures of this beautiful woman once before and said to myself "wow I can totally picture my own daughter in a white dress" (Rob on the other hand must be cringing at the thought). Her name is Monique.

Monique Elena Mori McKissick ~ Beautiful woman, daughter & bride

As I was reading her story I kept pausing to reflect on how we are raising Bianca the same way Monique was raised. Bianca goes to school almost every day with the occasional miss. She has excelled in school since day one, I know she's only in 2nd grade but reading at an almost 4th grade level and a straight A student, well that makes us proud! We have our ritual Family Friday night out which, for a reason beyond our control, she manages to end the day with a toy of her choice! And we treasure our simple weekends together as a family ~ crazy dogs included. We do so much more than what was expected of us back '02.

Robert & I were literally saying "screw off" to EB from the day we learned about Bianca's diagnosis. Yes we accepted that we were in for a real roller coaster ride possibly not strapped in at all times but we said "let's do it". No one said that the journey of life was going to be an easy one. The routes change all the time...and we're going to get to our final destination one way or another. The only thing under our control is how we arrive. Whether it will be laughing all the way like Santa or hissing and puffing like the Grinch ~ you decide! The route? Well that's already programmed into our destiny's GPS system.

Build-A-Memory

For us Build-A-Bear has been one of these places we only go to sporadically. As a matter of fact we’ve only really been there twice. The first time back in 2007, Bianca wasn’t too thrilled about the whole thing but she went along for the experience. The bear was named Zoey and she made it home only to be lost in the piles and piles of other stuffed animals never to be seen again except maybe three years later.

Bianca received a gift card for Build-A-Bear for her 8th birthday last month and all of a sudden she was really into it so much so that now she doesn’t go anywhere without her new buddy Biscuit. Biscuit sleeps, eat and does homework with Bianca almost everyday – she even makes sure Biscuit is comfortably tucked away every morning before leaving for school. I sort of breath in and out when she takes an extra 3-5 minutes in the morning while she accommodates Biscuit into his “favorite spot” on the princess sofa. Sometimes I tell her hurry up but lately I’ve let her have her way and tuck him away because honestly it shows me that she is responsible with the things she loves. It’s the small things that make us happy, isn’t it? It’s just another small step in our day that I pause and say “thank you Lord" because eight years ago we were told she will not be able to do so many things that today amaze us all! We love you our little Bee and as we get closer to celebrating the day we brought you home from the hospital the more I know we are truly blessed!

Build ~ A ~ Bear 2007

Build ~ A ~ Bear 2010

By the way it's great to see that she has grown just a bit in 3 years ~ between this pic and the one from '07 you can see she's taller =) Which makes us very THANKFUL!

Wrote In 2007 - Still Feel The Same Way 2010

This is something I wrote 3 years ago but still holds true today! It's nice to find these old writings deep in my computer...so I will put it out there to share with the rest of you!

Written for my daughter ~ October 26, 2007


Life is never easy and we all have something we must overcome to better ourselves. It's never easy to question why we go through what we do but I am sure there is a reason for what we go through in this lifetime. I consider myself lucky to have my daughter here w/me & helping me raise awareness for EB.

I would like to list the things that EB has raised awareness within me through my daughter:

Thankful for being able to

See my daughter smile when I get home

See my daughter sleep soundly like an angel w/out a care in the world

See my daughter sing to herself while she plays w/her dolls

See my daughter understand her condition

See my daughter taking care of a blister or a wound by herself w/out my help (because this shows me she has understanding of her EB as stated above)

See my daughter able to sit down to dinner w/us and ENJOY her food

See my daughter run, skip, hop when she's happy

See my daughter dance, sway, twirl when she hears the sound of any music

See my daughter call for her daddy to the rescue when a bug is in the house

See my daughter dream about when she'll be able to get married like "mami and papi in the picture at abuela's house"

See my daughter ride her tricycle and not scared of tipping over

See my daughter go to the potty on her own w/out any help from mom or daddy

See my daughter hug her daddy and tell him good night, sweet dream and I love you

See my daughter play in the pool w/out a care in the world

See my daughter lay by her daddy to "Get some sun"

See my daughter draw, color, paint w/precision

See my daughter make "cookies" w/me in the kitchen ~ but really making a mess

See my daughter being helpful when her daddy gets home by getting his slippers and some water

See my daughter GROW into this beautiful little person I was once told would never be here with us for long…although I know the road ahead is not easy I feel that we've managed to overcome many hurdles I think were not possible just a few years ago!

See, smell, hear, touch, speak to my daughter and have her reciprocate all the love we have for her back to us

Then there are the little things I am also grateful for like

Getting up in the mornings and seeing the sun rise

Getting to bed at night and seeing the sun set

Listening to the birds singing and then laughing at how they try to outdo each other by chirping JUST a little louder with each turn

Seeing a pair of squirrels run around in my back yard while the third one goes for the pot of gold (bread pieces, fruits, nuts I have left out for them)

Having my parents with me to be able to share so many wonderful memories w/them and Bianca

Having friends that can stick together and be there for each other no matter what

Having a group of people that really do understand what we're going through

Having the INTERNET to be able to connect to family, friends, and extended family

Having a house that has quickly become our home and it "just feels right"

Having a husband that is the most wonderful daddy in the world and the most loving man I could ever hope for

Then there are the things I am grateful to my daughter for which are

Teaching me how to be more gentle

Teaching me what unconditional love is all about

Teaching me how to have patience

Teaching me how to have LOTS of patience

Teaching me how not to have a care in the world as long as I can smile

Teaching me how to not complain about every little thing

Teaching me how to make the most out of life regardless of what you have been dealt

Teaching me how to LET IT GO

In summary being that this is EB Awareness week I am just overall THANKFUL to know my little EB Butterfly. My life would not be the same if she would have not come into it 5 years ago! I cannot even remember anymore my life before she came along...she has just made it that much better.


I LOVE YOU my dear daughter Bianca =)

XOXO
~Mommy (AKA Sally)

Bianca - 2007 - Almost 5 years old

Time To Start Over...But Not From The Beginning

So it’s been a while since I’ve blogged ~ a great long while & I believe it’s time to get back into it! So here we go…

First of all Happy Halloween! What do you think? Over did it with the bloody skulls? :)

Well moving on the next topic...in the next few weeks we’ll be having EB Awareness Week as we have been doing so every year since 2007. The bill was originally signed by Congress (HRES335) & the Senate (SRES180) in 2006. As much as I would like to admit that I’ve been “all over it” to raise awareness it has been nearly impossible this year! But I promise you that next year we should all come together and bring awareness to such a rare condition.

So let’s try and break it down here and there regarding Bianca & where we are 8 years later...WOW 8 years already?!?

School

Bianca has been doing exceptionally well in school! She is in 2^nd grade and has integrated herself pretty well into a “normal” classroom setting with very little hiccups. This of course could not happen without the help of her full-time nurse who is absolutely an angel sent from above plus her wonderful teacher who has taken a great liking to Bianca. There’s nothing more important in any child’s school environment then a great understanding between teacher and student! She’s currently in a 3.5 reading level (A.R), a straight A student (well the occasional B here & there plus maybe a B in conduct) & she has finally gained some balance in the weird confusing world of mathematics ~ for now!

Health

As far as health Bianca is hanging in there…she’s about 4 feet tall and weighs 62 pounds. Thankfully this has all been successful without the need for a g-tube. I can’t believe how lucky we’ve been thus far considering that the norm for kids w/her type of EB (RDEB) usually need some form of feeding assistance or procedure just to maintain a healthy “healing” cycle ~ plus they don’t normally gain weight or height. Don’t get me wrong we have moderate to severe mouth involvement due to EB but someway somehow we’ve been able to keep her on a regular eating schedule that has actually helped maintain her esophagus open. Her last dilatation was back in April ’07 and to go 3 years and 6 months without another single dilatation well it’s as close to a miracle that we’ll be happy to take! Along with the many other miracles we’ve had in the last 8 years! I honestly believe that giving her Zantac (or any acid reflux medication of your choice) on a daily basis has been the most optimal choice for her esophagus to go for so many years without dilation.

We’re still trying to figure out the situation with her clubbed foot. She still has a limp and gets tired on her left foot pretty easily but thankfully she manages to get around. You see the double edge sword here is that if we go ahead and do some form of procedure on that foot (where the skin is COMPLETELY healed and has been for years) we risk having a constant breakdown where there was never one…talk about the lesser of two evils. But who knows maybe she’ll be the first to decide to go ahead and get something done to “fix it”. For now we’re fine and why would we want to mess with fine?

This is really it as far as health goes ~ very little happening considering her original diagnosis. Dentist has been a trial and error situation. We love our dentist but Bianca still does not want to be touched or cleaned by her…so for now a few visits just to say “Hello” and a quick once over should suffice…on our next visit hopefully x-rays and a cleaning will happen…but in the meantime momma has the scraper on hand…not ideal but it has kept her teeth in great shape!

Misc

Everything else seems to be “hanging in there”. We’ve had a few eventful situations both good and not so good…but nothing we cannot overcome T~O~G~E~T~H~E~R! That is the key!

Here are some websites you should check out regarding EB:

http://www.mywalkamile.org/

www.debra.org

www.ebkids.org

www.ebpatient.com

www.befriendeb.com

www.ebfriends.ning.com