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 :)

It’s A Bloody Battle Every Single Day... (SLIGHTLY GRAPHIC)

Around these parts we go to war every single night. There are always casualties but many victories. Rarely do I post pictures of what we endure and these are in no way close to what many other children with EB go through - but we are still a small percentage of the population that before we kiss our children good night we must act as doctors, nurses, wound care specialist and nurturer before they slumber off to dreamland...and yet we always manage to find the comfort in one another every single day that is so important in our lives. Without each other's warmth we will wither away like grass and fade away like flowers who have no sunshine. So please make sure you give your children some extra love tonight! Even if they're already asleep!

Sometimes we have a night where we just pop one blister, slather on the ointments, wrap it up and keep going. Then there are nights like tonight. Bianca’s most delicate spots are the ones in the back of her thighs. She constantly breaks them down and heals them back up. When I think we’ve hit a turning point those two stubborn spots bubble up, the skin shifts and the cycle begins all over again. What is the most excruciating part is that there are times where these areas heal in a way where ONE SPOT decides to bleed out profusely and we can’t stop it. We can only try to move fast and put MediHoney, Silvadine or Neosporin along with the primary wound care dressing and wrap it up. The down part to this – by the time you wrap up the area blood has managed to seep right through the nicely clean bandages. By placing a new one on top we can say goodnight, pray that it will do some healing and redress it in the morning before heading out to a full day at school.

Is it unbelievable to say that throughout all this our beautiful daughter smiles and continues to go about her night as if nothing ever happened - tucking the dogs to bed, kissing us good night and even saying “sweet dreams”. How can I not appreciate life and have gratitude in all we do every single minute? She is proof enough that in this world we must continue to push forward without a second thought of looking back. We’ve been blessed so many times over by her presence – there is nothing I would do differently in my life if ever given the chance…NOTHING AT ALL!

The Remnants Of Today's Battle

The Victory Smile From The Battle Won Tonight
(Bee w/her new iPad from
Debra's Smile Fund - October!)

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/

Goodbye Summer 2013 - Hello 5th Grade!

Back To School Eve - goodbye summer 2013! It's been a real rollercoaster & one for the books! Camp Wonder opened up so many possibilities for us! Seeing old friends & making new ones on the other side of the country = priceless! Bee attended a regular summer camp w/her friends & while we were not sure how things would turn out at first we are 100% happy that she got to enjoy her time during the summer days indoors meeting new people. She went on field trips with her camp on her own several times with no issues – movies, park, museums…you name it she did it!

Today we spent the day with two of her closest friends hanging out by the pool, talking about the upcoming year’s events. While many great activities are planned for the 5th graders there is also an underlying preparation into middle school. Bianca has (7) teachers in total – (1) homeroom/math/social studies, (1) reading, writing & English, (1) science, (1) music, (1) Spanish, (1) art & (1) P.E. (which she’ll just do inside – writing/reading up on sports! We were told that there will be tons of moving back and forth through the day. I’m so thankful for her nurse who deserves an award for sticking around so long – this will be her sixth year with Bianca. We have been truly blessed with having her around!

While it’s bittersweet to say “au revoir l'été 2013” it is another level of success we’ve reached in the limitations that were laid out to us in 2002. The independence reached this summer by Bianca is astounding – the second to last week at camp she was hurt by a 3 year old child. While she was explaining to me what happened she could not stop stressing that he was just a little kid who did not know any better. She went into the bathroom on her own, sat down, called me and I stayed on the line while she handled the wound on her ankle. What’s different from any other time she’s patched herself up? She had to undress the bandage, cleanse the wound & re-dress it. All while making sure she would be comfortable walking on it until we went to pick her up in a couple of hours. This in itself was pure victory. She’s always been okay in cutting a piece of bandage and placing it to where the exposed skin was hurt. She never had to do a deep dive into wound care by herself like she did a few weeks ago.

So with that I say be safe tomorrow Miami and any other city starting school! Kids are out and about once again. So plan ahead – get up early – drive with caution. Our future is walking around the streets tomorrow.

5th Grade Here We Come!!

A Little Back To School Prayer

Lord, on the start of the 2013 school year bless my child with focus, friendships & fun.

Bless her w/understanding & comprehension for the classes ahead.

May she know that she can raise her hand & ask all the questions necessary to understand the lessons.

As well as speak up when she's feeling uncomfortable in a situation.

May she continue to be blessed w/loyal friends who bring out the best in her & each other.

May she be as positive & healthy as possible!

May her teachers, nurses & all of those she comes into contact with have firmness in their ways but compassion in their hearts.

I ask all this in the name of the Father, Son & Holy Spirit.

AMEN! (♥ you my butter).

 

 

Carnival, Talent Show & Prom OH MY!

So here’s my promise to try and do a follow up blog to the amazing adventure Bianca had at Camp Wonder! Bianca’s cabin was filled with so many fun girls and an amazing group of counselors. There was a Carnival theme day where they were all able to have some carnival fun! There were masquerade masks and tons of fun beaded chains handed out – I know because a nice bag size of those made it home with us. There was also a fun cupcake activity event! She said she chomped it down!

Another fun event for Bee was the Talent Show. Apparently there’s a video floating around somewhere of her singing “I’m wide awake” by Katy Perry. Sadly it hasn't surfaced for me to experience it…she received some great compliments that were passed down to me. She also did the “Cup (When I’m Gone)” song  by Anna Kendrick while she juggled around some cups. Still to be confirmed but I did manage to snag a great picture of that event!

  

Finally the real amazing day she had was the one that hosted Camp Wonder’s Prom! Camp Wonder sets this up because, sadly, many of these children do not get to experience a real prom. From what I understand there was a boy that was interested in asking her to the prom but he just didn't know how to approach her…how CUTE is that?!? Apparently, my child at the end decided she wanted to go to prom “stag”! She was more interested in hanging with her girlfriends than a date for prom. We weren't ready to have her go to prom but apparently Camp Wonder had everything in place for the kids to look dapper at their main event. You see, Camp Wonder managed to get all the prom attire donated by the employees of Cetaphil US – dresses, suits, ties, you name it! It made for such a fun event to just pick out a prom dress! So here I am thinking Bee is going to get a modest dress with sleeves and very comfy. BOY was I wrong! My daughter decided to pick a black/white tulle dress with tons of prickly, shiny and beautiful details. Oh and sleeveless! I do admit she worked that dress.

  

Over all her experience at Camp Wonder was such an empowering one! She did mature about a year or more! She seems more confident and in actuality feels more at ease that she’s in good company when it comes to speaking about EB to her peers. I have seen her form some amazing friendships and created some unforgettable memories! I can only pray for good health and many positive days ahead of 2013 into 2014 so she can make it back to Camp Wonder next year!

I have to give some personal thank yous to a few people out there! Christine Tenconi who contacted me and answered many questions I had regarding camp, including setting up all the travel arrangements and my endless emails. Also, Francesca Tenconi for having the same ease and confidence to have established such an amazing camp! Dedication and hard work has paid off exponentially for so many families thanks to her unselfish ways! Also, Richard  (I fail to remember his last name) who gave us a stern talking to at camp (by us I mean Robert and I) to let our little girl become even more independent and to have faith that those that are in the med shed really do know and understand about EB and it’s medical involvement/care. Then there’s wonderful Danielle Malchano from National Rehab who not only is a part of our wonderful supplier that delivers Bianca’s bandages every month but was also one of her nurses at the camp that helped Bianca with bandage changes, showers and so much more! Then there are those counselors like Sarah, Alexis and Carter plus Jassamine who texted me a picture here and there to put my worries at ease. Thank you as well to the Taylor Family Foundation for providing such an amazing venue to host this special camp! I am eternally grateful to so many more that I can’t remember a name but do remember a face! This has been overall an experience we will never forget!

See you in 2014 Camp Wonder!

Goodbye Mother…Goodbye Father…I am here…at Camp Wonder! Day 1 & 2

Yes goodbye mom and dad…hello to her fellow peers! Those were the words repeated to me not even an hour after settling into Camp Wonder the week of June 23rd, 2013. The camp is situated in the breathtaking city of Livermore, CA. This opportunity has been presented to us several times before but it wasn’t until this year that we felt Bianca was ready for a sleep away camp (with the parental units not even 10 minutes away in the outskirts of the city). It took several months of getting her comfortable with the idea. I managed to engage a young lady by the name of Ariana to speak with her about camp. I also recruited another EB mom’s son, Zach who we’ve known for many years to speak to Bee about the excitement that can only happen at Camp Wonder. These two were instrumental in getting her all psyched for the adventure!

While I do not have insight into everything she did while at camp I do have a few highlights put together between pictures and conversations. Of course this will be 100% from a parent’s perspective and a few details from Bianca to fill in the gaps.


Day 1

We arrived on a bright beautiful Sunday afternoon at Camp Arroyo which hosted Camp Wonder’s week of magic. Registration took some time since the many doctors, nurses and med students that were volunteering needed to interview us regarding medication, bandaging routine, feedings, etc… They were thorough in their questioning and each team was made up of 4 – 5 interviewers. No one missed a beat – if someone omitted a question another one followed up. Then up to the main nurses’ station to speak to what seems like the head nurse or medical personnel. We recapped what was covered and any concerns I had regarding dressings. Really I had none because I was planning on coming every day to do the bandage changes. Little did I know this was about to change. I was in awe that the team absorbed this information so well because I am in a constant battle trying to explain it to the common world. But these are people that have been around EB from a few days to several years. I usually do not encounter such a knowledgeable group under one roof during our regular lives.

Once we were registered we were able to take a stroll up to the cabin where Bianca would spend the next five nights. Her cabin’s name was Willow. She had a bottom bunk and she was sharing the room with five other campers. What an experience. She was a bit apprehensive at first but Sarah, one of her wonderful counselors, quickly put her at ease and she evolved into a young mature lady in front of my eyes. We made our way to the mess hall where I said goodbye and headed – hesitantly – to the hotel. We had to come back anyways because we left some items she needed for her stay. When I returned she looked at me and said “What are you doing here? We already did bandages!” Of course you can only imagine how surprised I was that she was okay for a few hours on her own already. I quickly told her I came for a quick minute to drop something off. Gave her a kiss good bye and left.We received a phone call during the evening hours that Bianca got her first blister above her eye. I freaked out and thought FOR SURE she was going to ask me to pick her up. Instead she said she was fine it was during a game of Oreos on the forehead and she was snipped by mistake. If she wasn’t freaking out then there was no reason for me to freak out either. 


Day 2

Rob and I got up early in the morning to head back to the camp and see when we can do dressing changes. We are all new to this so I did not realize that there are time-slots provided for parents. When she saw me she once again said “What are you doing here? I’m playing and having fun mom. Can we do dressings later on?” I was rather taken aback by her statement. While Sarah, the counselor, was checking to see if there was a spot open at the med shed Richard (one of the camp director) came to speak with us. His words, as stern and solid as they were hit a core. He said that while no one will ever care for Bianca the way we do the medical shed is equipped to handle any and all severities of EB. The staff is on call 24 hours a day with dressing changes happening around the clock well into the night hours. It is all they do while at the camp. I had to step out, compose myself and walk back into the mess hall. I was a ball of nerves. Is this man really asking me to hand over 10+ years of caring for my child’s medical needs to a bunch of strangers? Albeit, caring, unselfish, knowledgeable and professional strangers but exactly that – S.T.R.A.N.G.E.R.S! So the next step is to see how Bianca would react to the news. I quickly gathered the name of the nurse that would be working in the shed – Nurse Pam. Bianca had already met her the night before. So when I approached her I asked her if she wanted to continue playing and then Nurse Pam would take care of doing dressing changes for her while at camp. Her response…a swift “sure no problem” – I felt all the air being sucked out of me when she said this so nonchalant. Bee 1 – Mom 0. Okay let me step this up a notch…I asked her if she would be okay with the nurse helping her with showering to do her dressings and she once again didn’t hesitate and said “why not…I shower on my own…I should be okay” another sucker punch to my soul! Bee 2 – Mom 0. So at this point I digressed. I had to come to terms that my little girl was a little bit more prepared than I was for this whole camping situation! 
Walking back to the car proved to be one of the most emotional experiences for me in a long time. I was leaving behind my little girl in the capable hands of medical professionals that understood EB. Someone else was going to be keeping an eye on her…someone else was going to be doing dressing changes…someone else was going to be helping here…someone else that’s not me! The last time I had to do such a thing was back in 2002. Looking back at the situation I believe the reason I took it so hard was because I’ve been here before – it just wasn’t during a positive time like Camp Wonder. Time to re-frame my mind!


Theme from Camp Wonder

• Day 1 - Arrival - Hellos & Welcomes 
• Day 2 - Floats & Parade plus they got to pick their prom dresses & accessories 

In her bunkbed 

Front door of her cabin 

Enjoying the music 

Fooling around w/Mr. Zach 

From crawling on the floor at their first PCC to Camp :) 

With her new friend - Charlotte 

Parade Day! 

Bianca and Camp Director Richard 

Hanging w/her new friend Briana