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!)

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 

Bianca’s New Found Love for Meditation & Healing Music

In the quest to look for a more homeopathic way of helping Bianca cope with her pain I began experimenting with guided meditations. Over the last year we began incorporating meditation into Bee’s daily life. While it was wonderful to do the meditation 3 times a day – morning, during bandages and night – I quickly realized that it was not the best for the bandaging routine. At least not the guided meditations since they focus on what’s going on in our bodies at that particular moment. However these guided meditations are a wonderful way to start our mornings and a fantastic way to end our evenings. For our wound care routines we have decided to either read a book (no TV or distracting polluting sounds) or hear some instrumental healing music like Healing by Anugama. The sounds and flow of the music really helps Bee get into a relaxation mode during our wound care. She is much more at ease and in a good place ~ she still has her moments here and there but that is to be expected. We always wish we can wave that magic little wand we must have lost somewhere and make things 100% better.


So back to the morning and evening guided meditations that we have incorporated into our lives. There is a website I stumbled upon called Meditation Oasis many, many, many (okay drop one many I might be giving my age away here…) years ago. I have been actively meditating for quite some time and do it at least three times a week. Meditation Oasis released a children based bedtime meditation. It has been wonderful playing this for Bianca during the evening. I have extended it from just one meditation to two at nights. I created a playlist on my phone that is called Bee's Bedtime. I switch up the first meditation with one of Meditation Oasis' many other listed podcasts. The complete list is here: Meditation Oasis Podcast List - It's hard to pick a favorite but #5 - Simply Being, #14 - Beyond Pain, #18 - Gratitude Meditation and #25 - Discovering Peace are a few of the ones we use over and over again. An actual quote from Bianca yesterday was "Mom I was in such a deep sleep and relaxation that I didn't even make it to the second meditation for sleep!" - she enjoys it and I think helps her be more at ease with the pain that goes on through her little body almost hourly.

In the mornings there is one special YouTube video that we've enjoyed together. It is called Morning Blessing - Beautiful & Peaceful Start To Your Day. It's short, sweet and to the point. Really helps her start her day on the right foot. Honestly it helps me have a wonderful day as well! If we search for videos with words like "morning guided meditation" or "morning gratitude meditation" we will find several other options.

Bianca literally asks before bedtime that she wants to hear the meditation. She always comments "Mom I'm going to brush my teeth and put cream on my hands and then I'll be ready for my meditation, okay?". Never did I imagine that my 9 year old willing to do something as serene and soothing as meditating. As a parent there are situations that present themselves to us and it's our duty to figure them out - if we can't then we just let it go after a couple of failed attempts to "UNDERSTAND". In this instance meditation has been a God-send for our beautiful butterfly. It has helped get through the grueling process of a nightly routine that's very often filled with pain, blood and tears. While EB continues to try to steal away our happiness we are constantly squashing it like a bug. By keeping Bianca in a somewhat flowing and acceptance state of mind we have been able to conquer the nasty beast that is EB.

Until next time...

Bee completely passed out after a dressing change & her
guided meditation :)

Tucking her in she would not let go of her new friend "Fudge"
she made at her Build-A-Bear party!