A Summer of Firsts 2016

In January I will be running a 10K in honor of my 

Butters-Bee. 

Please consider sharing or donating to this wonderful event! 

CLICK THIS LINK:
2017 Walt Disney World Marathon Weekend - Sally Contreras

We’ve had a Summer of firsts! It’s been a little crazy around here and Bee’s skin is starting to show some signs of “wear & tear”!

First Solo Concert

Back in July Bee was dying to go to a concert with a friend. By Herself! I was like no way no how will I let her go on her own. Instead of being quick to judge I turned to our online community and asked for their feedback. I received so MANY great tips and insight on how to go about this with Bianca. One tip that I was not aware of is that I could call the venue and ask them if they will allow me to wheelchair my daughter and her friend to their seats. I wasn’t aware how accommodating they can (or have to) be upon these requests. Immediately a rep from the BB&T Center contacted me to first reassign the seats that were originally purchased by her friend and second explain to me what my options were for her to have an enjoyable event. Bee was actually assigned a “concierge” personnel that would assist her if she needed anything during the event. She greeted us at the door and walked us all the way in and then escorted me out. My heart was jumping all over the place for the next 3 hours. But she was good at texting back whenever I sent her a message. Thankfully she did make it back in one piece! She loved the band (Twenty One Pilots) and the experience of spending time alone with her friend!

First Sleepover

Aside from her first concert she had that same night her first sleepover! Wasn’t sure what to expect or how her friend would react if we had to do some impromptu wound care. Thankfully they had a fun night chatting and singing about the concert. I don’t get their socializing behavior because they went from chatting to dead silence while they posted to social media. I guess as long as they were having a great time all in all it was a great experience. They closed their sleepover by watching Mean Girls…another first!

First Electric Wheelchair

We finally decided to purchase a simple but yet durable electric wheelchair for Bianca based on the recommendation of another peer that has the same type of EB as Bee. It is called the Air HawkElectric Wheelchair. Of course feelings are mixed at home but I think we might finally be seeing eye to eye on this due to the additional independence that Bee can gain from having this chair. There’s a saying in our EB Community – you don’t use it you lose it. And we’ve lived by this since day one of her life.  One main concern is her adaptability to want to use the chair ALL THE TIME. For that reason we decided that for this school year (her last in middle school) we will not be using it. This year we’re trying it out so that come high school years she can get around a bigger campus a bit more comfortably. We also park close enough to a venue (restaurant, movies, etc…) for her to be able to walk in physically instead of using the chair. So what’s the chair for? Well it’s mostly for those bigger venues – malls, parks, concerts and so on. When I go to the mall with her I want her to have the ability to go to the areas she wants to check out without being at the mercy of someone having to push her there…or not go at all because we’re pressed for time. This upcoming September we’re hitting Disney World for Mickey’s Not So Scary Halloween Party and it will be a perfect opportunity to see her be more independent while at the park with her friend.

 

First Time Walking Into School By Herself

So this one is a doozy. I have been walking Bianca into school for the last 9 years. Schlepping her book bag, lunch bag and everything else necessary for her to have a productive school day. Today for the first time ever I allowed her to walk herself in. I was a bit emotional probably as emotional as the first time I had to leave her at school or camp. She did just fine opening doors and settling in at the office. Of course I didn’t move from the original drop off point until she texted me she was a-okay!

Some of these things might seem so frivolous to some or maybe not such a big deal. But when your child is born with so many odds already against them you do everything in your power to defy those odds. It’s been almost fourteen years since she was born and fourteen years since we were told she would always be bounded to a wheelchair, take all her nutrition through a g-tube, have issues being independent and so many other life altering situations. I’m comfortable saying that, even though we have crossed some hurdles and might still be dealing with a handful of them, we have managed to maneuver around many of those outlined.

                                                                                                           

“I wait for the Lord, my soul waits and in his word I put my HOPE!”

~Psalm 130:5

Hoping I can re-start some blogging about these new chapters in Bee's life! I can't believe how far we've come and putting it in writing makes me realize just that - we've come a long way baby!!

Rare Disease Day - What Does A Rare Disease Look Like?

Behind my daughter's gorgeous smile we have a monster lurking. Periodically it rears it's ugly head & tries to defeat us. However, it cannot break us down or apart! What does a rare disease look like? Like a happy go lucky tween who loves to sing, draw & act! Who has a desire for life...a creative mind that makes up these imaginary world of wonder & fun! It looks like any other kid her age that might have some limits in life but nothing that she doesn't overcome without a few modifications.

Today is rare disease day & just for today try & educate one person on EB...which is, in my opinion, one of the rarest diseases around.

Check out EB Research Partnership: www.ebresearchpartnership.org

Bee @ Downtown Disney ♡

Bee @ Dave & Buster

My "Incredible" Family @ Hollywood Studios

The REALLY MONSTER that EB can be...
But our Faith in God, our Spirit of Hope &
our Belief in Miracles plus constant woundcare
always help us defeat this monster in battle!

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

Dilatation #2 ~ 7 Years Later! Hip! Hip! Hooray!

Synergy and serendipity often play a big part in medical and scientific advances.

Julie Bishop

We have had an eventful Friday that's for sure! For those that were not aware Bianca has been having some serious difficulties eating solids. Food was getting lodged & she was choking more than normal on every day items she loved to eat! She was ready and willing to do an esophageal dilatation. As a matter of fact it was the topic of choice on our road trip back from debra's PCC in Nashville, TN this past summer - she was adamant about having it done. She wanted it done before school began. She wanted it done so she can eat in peace. She wanted it done to have one less thing to worry about. All I was able to do at this point is respect her wishes. SHE WANTED IT DONE! This is her life therefore her decision to make - we have, after all, dodged this bullet for the last 7 years & 4 months since the last time. Now for many this might seem like the least invasive procedure in their lifetime when it comes to dealing with EB. However, for us, anesthesia has not been friendly. So our concerns were maximized knowing very well that Bee does not respond well to anesthesia. The game plan was to administer Albuterol prior to her going under. Glad to report it worked like a charm!

Our day started at 5:15AM - we arrived at the hospital at 6:00AM only to have to wait for about 4 hours before they even had her under. She wanted her daddy (superhero) to go back to the OR with her - we were thankful that they allowed one of us to go. Usually parents/family members are not allowed beyond those steel double doors. As we waited so many things ran through my head but much to my surprise her surgeon was back with wonderful news that I'll detail below. 

The staff at Jackson Memorial Hospital were amazing! Dr. Eduardo Perez, Pediatric Surgeon &  the anesthesiologist Dr. Amanda Saab were excellent! Everyone in between were so kind & helpful! I really cannot complain & best part Bee came out unharmed without a single new wound or tear! The entire team listened & applied every single request we had when she was under the care 100%. What a relief! Dr. Perez showed us some pictures of before & after of her esophagus which were amazing! He managed to get it all the way to 18MM = 1.8CM. The average adult esophagus is about 2.0CM. That's a huge feat for us! The plus side of all this is the impromptu scoping of her stomach lining. It is a pretty beige & smooth picture with no signs of gastritis! Total score! We also ran blood work based on EB specific levels but we will have to go back for those results later.

We arrived home around 430PM. Recovery was okay. Bee was very agitated & uncomfortable. She refused anything for pain or nausea. She kept getting more upset every time she was asked. We managed to get clearance after a few hours. She refused drinking any liquids or having an ice pop so we couldn't leave sooner than anticipated. Her chest X-ray was cleared if any concerns regarding perforation & her blood pressure/heart rate were steady. Only when she swallowed did she feel any pain or spasms. Bee took a nap as soon as we arrived but gagging reflexes are very strong so lots of spitting up. After a couple of hours she finally sipped some water but we have yet to try something cool & thicker like a yogurt. Hoping she soon has at least a frozen gogurt or for a peaceful night! Either one is welcomed!

We want to thanks SO MANY out there that reached out to us. Having you alll praying, sending positive vibes, well wishes and just shooting us encouraging messages helped us have a successful procedure. Also a warm thanks from our hearts to the Butterfly Fund for rallying their Prayer/Positive Vibe Warriors & sharing Bee's Amazon Wish List! I know I'm going to have one very happy tween in the next few days!

Post by The Butterfly Fund.

All our love ♡
The Contreras Family

P.S. As I was finishing this post Bee just finished up her strawberry gogurt! All she could say once it she finished it was "Oh man that was good!" All is good at the Contreras Household tonight! All is good!

Where we started!

Slowly beginning to expand it!

Then building upon it!

And finally wide open! What a difference!

The beautiful lining of her tummy! I can honestly say I am in love with this picture! I have been admiring it all day since it was handed to us this morning! :) 

Knowing When It’s Time for an Esophagus Dilatation

An esophagus dilatation is one of the most common medical procedures an RDEB patient has done. Some can usually go several months between dilatations while others can go several years. Bianca’s first dilation was done back in May 2007. Symptoms were almost the same then as they are today but she wasn’t as expressive as she is now.

Our symptoms have been the following:
 ü  Food getting lodged
 ü  Constant running to the bathroom to spit out food
 ü  Esophageal spasms that last anywhere from ½ an hour to an hour
 ü  Saliva accumulating to the point where it thickens and can’t be swallowed
 ü  Waking up with a drenched pillow

This go around I observed several things:
 ü  Spending more than 30 minutes to drink 8 ounces of Boost
 ü  Not sitting down to have a full plate of food (according to her standards) in more than a week
 ü  Picking up her favorite fattening drink – Frappes and leaving them in the fridge ¾ full
 ü  Wounds that usually take 2-4 days to heal have surpassed the week mark (slowly turning from acute to        chronic wounds)
 ü  Waking up to gagging and spitting for more than 30 minutes
 ü  Struggles to eat foods that previously did not cause such issues like mashed potatoes, yogurt and                  spaghetti

I will admit it – I was in denial for a long time. Slowly transforming me into someone I did not like. We should have looked into this at least 3 months ago. Our relationship has become touch and go – the simple fact that she didn't eat throughout the day, the amount she should have to sustain herself, put me in total warrior mode. The invisible force I was fighting? The hideous beast that is EB! This turned me into a tiger mom! I have started flying off the handle and not watching my temper. This past Monday I took inventory of all that has been transpiring, including how the stress has expressed itself in physical form. Stomach pains, migraines, lethargic – this was the way I started to feel. Bianca has also become a bit more difficult – acting up in school and giving attitude to many around her. Of course with the lack of nutrition she has also not been able to focus 100% on her studies. Let’s not even mention how a wound that would have usually healed in a few days has taken more than one week to start healing. All this because the eating situation has slowly taken a negative turn for the worse – we were attempting to control something that truly was out of our control and it’s dark cloud was hovering over us for way too long. The last straw was when she could not even swallow her saliva. This is where we knew we needed to set up an emergency appointment with the pediatric surgeon. When all was set and done in less than 24 hours we had a game plan – do the barium swallow on March 24^th and have the esophageal dilation on April 4^th.

To understand what she is having done you can check out the following two videos:

  ü  Barium Swallow

ü  Esophageal Dilatation

This is a picture I shared on the wound that has taken way too long to heal

When all else fails and while we wait to have her scoped out and dilated we are enticing her with so many yummy things – the downfall? Mommy ends up caving in and having the high fat, sugar and calorie items as well…

And now we patiently wait another three weeks and pray that she will take enough calories - in any way possible - to sustain her until April 4. The answers we did get today is that she's still hitting the mark in the growth chart!

At 11 years and 6 months:

your child is 77 pounds, and that is
at the 26th percentile for weight.

your child is 54 inches, and that is
at the 7th percentile for height.

Attitude with a side of Gratitude – Hello Holiday Season!

As the years have gone by the holidays have become a treasured time for all

Bee & her Christmas Tree! 

of us. It starts out hectic and stressful but as the days progress we get a bit more comfortable with the notion that we are allowed to ease up and just relax! Spend time with loved ones – be it family, friends or both! After Bee made her grand entrance into this world back in 2002 our gratitude levels for the small things in life have been heighten. It also brings with it other heighten emotions.

We’re finding a very passionate relationship between the two of us – like a tug of war of emotions. She’s very adamant about her actions not understanding fully their consequences. I’m absolutely strict about the consequences not realizing their end results can be detrimental if I handle the situation with too much of an iron fist. How else can I derail the self-entitlement attitude that’s developing? There’s no corporal punishment going on here so taking away certain things only work temporarily. Screaming once in a while is useless because it only makes the princess child more stubborn to keep her stance on whatever the situation. So what’s a mother in my position to do? Give chores! With the exception of doing the laundry and washing the dishes – well dishes are next on the list. Step stool, soap pump and easy handles…we’re set! When there are no other chores left it’s reading time and when that’s over it’s time to crack open her teacher’s Teachers Web profile and study some more!

Thankfully the holiday season is the time where we become a bit more lenient and spend time creating family memories together. Hopefully we can downgrade on the attitude and upgrade on the gratitude. I’m sure we will but it will take a whole lot of patience and breathing exercises! 

Hope everyone is having a great start to the holidays! 

Thanksgiving At Mima's House ~ Cuban Style

Clowning Around @ Mima's House

Cuban Style Thanksgiving
Rice, Red Beans, Turkey seasoned w/Mojo
& Flan!

Happy Thanksgiving From The Contreras Family!

Playing with the furry ones! 

Bianca loves her hot doggies & her little chi!

Kisses from Hannah...

Hannah Love!

More Hannah Love!

Royce is so calm & cool!

Hannah can't stand not being the center of attention...can you tell?!?!

Hanging w/Abuela :)