Debra PCC 2012 ~ Quotes & Paraphrases ~ Blog #2

Originally I was going to try and write a couple of blogs regarding all the information that was presented to us at the 2012 debra PCC. However, considering the time restraints I am usually under I figured we can leave it up to debra and their media relations team to roll out the videos (hopefully on YouTube) of the conference. However, below are some of the quotes and phrases I heard at the PCC that grabbed my attention and reminded me of the immense gratitude I have towards our special world. While EB it's the "worst disease you've never heard of" it has brought with it an amazing group of people (from those afflicted by EB to their caregivers to the medical professionals).

To repeat what I have already said the day after the PCC was over:
"DebRa/PCC #5 Takeaway ~ the research that was just a theory in Palo Alto, Nashville, Denver & Cincinnati is now underway, the treatment & QOL for our loved ones with EB is progressively being challanged by the medical/manufacturing/caregiver community w/positive results & the EXPLOSION & MOMENTUM of cutting edge research is now extremely tangible. While all of this feeds our physical state of mind the sideline conversations & camaraderie is what feeds my soul! Together they keep me STRONG for whatever tomorrow will bring for my precious daughter! Until the next one! Safe travels to all!" ~ Aug 2, 2012

~*~ NOTE: I believe I have my notes inverted but I believe quote/paraphrase #1 was Dr. Wright, Dr. Azizkhan or Dr. Lane. If you remember feel free to let me know! Either way it was one where I couldn't stop laughing! As for quote/paraphrase #4 Dr. Tolar showed a side that very little doctors/scientist show at their level of experience/education! YOU GO DR. T! ~*~


1. On wanting to find the best possible direction for treating patients with EB:

“Put me out of business…PLEASE!”

–Dr. J. Timothy Wright, DDS, MS Bawden Distinguished Professor & Chair, University of North Carolina


2. Answering a parent that spoke about their medical doctor back home requiring routine dilatations on their child:

“There is no such thing as a routine surgery.”

–Dr. Richard G. Azizkhan, MD, PhD Co-Director of the EB Center at Cincinnati Children’s Hospital


3. Recommendation from a clinical psychologist regarding our outlook on EB:

“Change how you feel about the situation.”

“Disease does not define person.”

“Don’t dwell on illness.”

-Dr. Mark P. Popenhagen, Psy.D Pediatric Psychologist Dreyer Medical Clinic


4. His approach on taking on the care of an EB patient and their family through his Stem Cell/Gene Therapies:

“I have to listen to the mother…the mother always know!”

-Dr. Jakub Tolar, MD, PhD University of Minnesota
U of M - EB Website

 
5. Comments about our skin that has somewhat eased my mind for now for my RDEB child:

“The outer 5% of skin is the most important. Below that is where the ‘AF’ (Anchoring Fibrils) are not holding together. Our cells divide and form (3) new mutations. One out of a billion makes a mistake. Advantage is that in the bad mutation the cell falls off.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford UniversityStandford - EB Website


6. Dr. Lane’s comments regarding Gene Therapy:

“It’s not a cure it’s research.”

“Gene Therapy aims to correct defective gene. A Virus is used to carry the gene (Gene Transfer). It puts in and turns it on.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford University


7. Dr. Lane’s comments regarding Gene Transfer:

“Skin Biopsy ~> Grow Cell  ~> Viral Transfer ~> Epidermal Sheet Production”

“Last up to 12 months ~> FDA Approval Expiration ~>Test after several weeks (12) or months (6) = Type VII collagen positive.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford University


8. Brett’s opening remarks regarding debra:

“You’re going to see some big changes in the near future…lots of them!”

-Brett Kopelan, Executive Director debra of America


9. Elevator conversation between two kids w/EB (Bianca & Zach) while they stared at their images in the mirror:

“I did it again looking handsome & fresh.” ~ Zach

“Yup I’m one hot looking mama.” ~ Bianca

-Zach Johnson & Bianca Contreras, Future World Changers

Debra PCC 2012 ~ Integrative Therapies (Dr. Traci Stein) ~ Blog #1

DISCLAIMER – My daughter is diagnosed with RDEB – Recessive Dystrophic Epidermolysis Bullosa. She was extremely severe at birth but has improved over time. Some symptoms typical to RDEB are and will be present. The information listed below is what has worked for us and we will continue to back it up as long as it shows us a positive outcome. I only hope that this information will be helpful to others that suffer with a chronic condition like Epidermolysis Bullosa.
~*~Namaste~*~
So we're back from the PCC and I’m still trying to digest the information that was flung at us from every angle imaginable – conventional vs. unconventional, traditional vs. non-traditional and so on. The one item I am jumping at to cover for the moment is Dr. Traci Stein’s approach at pain management through hypnotherapy and meditation to help alleviate pain, itch and mood symptoms in patients with Epidermolysis Bullosa. I was pleasantly surprised and elated that this year debra took a risk in introducing such a controversial approach to pain management. So many of those affect by EB (Epidermolysis Bullosa) rely on pharmaceutical prescription drugs to ease the pain and rarely do we hear doctors, patients or their families speak about integrative therapies (i.e. guided meditations, Yoga, etc…). Also the mention of the practice of Yoga to ease the physical and mental pain was very welcoming. Let’s face it, at the parental level we know that our kids are cognitively all there; they are normal in every sense of the word when it comes to their mental state. Some even surpass our pre-conceived notions of maturity – my daughter is one where she will soon be 10 going on 30!


Dr. Stein spoke in regards to pain being a “mind-body” phenomenon. How the two (mind & body) are interconnected and very powerful on their own. Together they can exceed our general expectations of what we are capable of doing. Her integrative approach to pain and itch was broken down as follows:

1. Mindfulness

2. Hypnosis

3. Biofeedback

4. Aromatherapy

5. Cognitive Behavioral Therapy (CBT)/Acceptance

6. Yoga

These fields of exploration for the pain and itching will allow our children to have a “sense of control” over their chronic conditions. The exercise alone done by simple Yoga moves like Anusara (which means Flowing with Grace) integrates our body’s principle forms of alignment with the celebration of the heart and spirit. You can also look up Hatha yoga moves – between the two they are the gentlest form of Yoga practices available.


Dr. Traci Stein has a blog and Facebook page – so become a fan and follow her therapeutic advice! I know we have enjoyed having these types of non-conventional holistic approaches towards EB as part of our daily/weekly routines.

These are some typical poses that can be adapted to be EB-friendly - the sitting ones are probably our best bet. Savasana is - of course - my favorite pose!

Side Note

I am going to refer back to a post I did almost a year ago which includes links and information to a guided meditation Bianca enjoys. I highly recommend it and suggest it to be downloaded into an iPhone or Android for easy access. These have been instrumental during the school year to put her to bed quickly and have a very restful night – something that is needed for our children to heal, grow and thrive.


Bianca's New Found Love for Meditation

I also get lifted by a website called "Tiny Buddha" in which it provides amazing stories that connect to so many other facets in our lives. They also have a Facebook page. I figure if I can read something that feeds my soul then my mind and body will be balanced to deal with the daily struggles that EB brings us.




NASA - Kennedy Space Center - Aug 2012
Bianca has gained self confidence and flexibility just by practicing the
meditation and some simple Yoga poses on and off! :)

Our First Mother ♥ Daughter Photography Session

In a world of digital cameras and picture sharing through social network uploads we have started loosing the tactile form of reliving our fond memories in an instance. Today many of us must be “connected” to reminisce what a great time we had in our trips, holidays and birthday parties. While it’s great to have these pictures posted online and share with our loved ones around the world I realized my home was stuck in a time warp picture display! With the exception of Bianca’s school pictures the last one we have on display is that of her sixth birthday party! She’s going to be ten so that’s about four years without putting one single framed picture of our trip to Ohio, Colorado or Tennessee. Her birthday last year at Build a Bear had some beautiful pictures of her friends having a blast and the holidays when we dress up have all been posted and forgotten in about a week time span! This is why I decided to start a new tradition – taking professional pictures every so often and start rebuilding our photo display at home. Photography has evolved from your traditional Muñoz Studio package (for those of you from Miami you know very well who that is…). Today professional, talented and very unique photographers take their art almost anywhere to create a personal, one-of-a-kind experience and pictures. From silly to tender poses these new wave of photographers catch our lifestyles! Not your lackluster family portrait where everyone is strategically arranged. The best way to take advantage of such a exclusive service is to sign up for a mini session.

I found Stuido by Carmen through a friend’s recommendation. I liked her page on Facebook and instantaneously Carmen posted about a Mother’s Day Mini Session. These sessions are usually a ½ hour long and depending on the package you will get a CD of 5 – 10 files for your personal use. I can order extra prints through Target, CVS, Costco or wherever a photo lab is located; beats having to pay $200 - $400 a package through our old school photographer. Bianca and I had such a wonderful time! She hammed it up for the camera and was dancing all over the place! She couldn’t get enough and here I thought she was going to be a bit shy performing in front of two perfect strangers! She danced, jumped, posed and rocked it! She’s now excited to go back and do it again. Hopefully Carmen will post about another mini session real soon and we can incorporate daddy into the pictures. The best part is that these pictures are going to make the grandma’s tear up a little! My mom will get the one where I am holding her gently with my eyes closed. While my mother in law will get the one where she’s being spunk and dancing around. Both of them will definitely be in for a surprise. Unfortunately, we couldn’t get the photo book in on time. But that’s fine because I’m sure the two pictures we are gifting them will make the impact we’re looking for – proud, happy and thankful for their beautiful granddaughter!

Happy Mother's Day to all the Supermoms and Honorary Dads out there!

As long as there is healing...

...there is hope! Amazing how the saying “this too shall pass” comes to mind when I see the positive progression of Bianca’s wounds healing in less than two weeks. The reaffirmation that leaving it in God’s hands and believing that His will be done once again made me a believer in miracles. I have always believed in miracles but there is nothing more humbling than experiencing one on your own once in a while.

Peace, love, understanding and compassion to all!

42 Days + $229,716 = A Second Chance

Bianca was born on 09.17.02 but she began to live life on 10.28.02.

The formula to Bianca's second chance at life goes as follows:

DIAGNOSIS

• Moderate acquired apnea - side effect from morphine dosage to alleviate pain - caused her to stop breathing twice in 48 hours - was bagged and once again she started breathing.
• Narcotic-induced depression - she was switched to methadone which dropped her pressure and made her lethargic.
• Severe Pseudomonas sepsis - infection so severe she had to be placed on IV administered antibiotics. Two catheter lines (Broviac) - at this time we almost lost her...11 days after birth. She was placed on a 21 day cycle of antibiotics. Half way through she pulled out the line and the second one was inserted.
• Mild thrush - due to prolong administration of antibiotics - overgrowth of fungus developed.
• Severe congenital Epidermolysis Bullosa diagnosis - confirmation received of her clinical diagnosis
• Moderate acquired anemia - due to the trauma of dressing changes and all the denuded areas of skin there was a lot of blood loss. This eventually led to a blood transfusion.
• High cal nutritional intake requirement - Special high calorie formula (24 Cal) was provided which helped in the steady weight gain during stay at the NICU.
• Possible cataracts - A thin membrane was noted over sections of the eyes. Possible trauma created an early onset of cataracts.

PROCEDURES PERFORMED

• Skin biopsy
• UVC placement
• Skin grafting on legs
• Skin grafting on hands
• Skin grafting on hands (2nd attempt)
• V.A.C. - Vacuum Assisted Closure on legs
• UAC placement
• Central venous catheter (cut-down)
• Second skin biopsy (punctured section on top right thigh)
• Lumbar puncture (possible infection that was life threatening)
• Echocardiogram
• Central venous catheter (2nd attempt cut-down)
• Blood transfusion

Days in the NICU

• 42

Total billed by insurance carrier

• $229,716 - up to October 16 - additional claims were received that quickly skyrockets that number passed $250K including the genetic testing a few months later that was an additional $4,500.

An average amount we spend today on a monthly basis for bandages is $2,333 give or take - and that's on a good month. Add more to that when there's additional breakdown, blistering and wounds. Nutrition is another big factor that we calculate surpasses $250 alone for Bee.

So in the twisted humor that we have slowly mastered in the last 9 years we can safely say that we have a million dollar child on our hands. Gives a whole new meaning to the term "high maintenance".

Next blog I'll give you some links to check out...awareness is the key to conquering this genetic condition. The numbers I listed above is for a mild-moderately involved child - I cannot begin to imagine nor do I pretend to know what a more medically involved child, who's much more severe than Bianca, can cost the average middle to low income family.
 
P.S. I invite you to Google some of the words or phrases you might not understand from the above. The more we spread awareness and understanding the more compassionate and willing our society will be to learn about our "not so perfect but very blessed" life. Not taking things for granted is the only thing we live for nowadays!

~*~Namaste~*~

Hanging w/daddy-o!

Serious Baby

She use to love her Little Einstein videos

Toothless Cutie

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!

EB Awareness Week 2011 ~ Bee’s Hands & Her Capabilities Beyond Our Expectations

Bianca ~ Aug 2011 ~ Almost 9

As many of you know Bianca has a form of EB that is called Recessive Dystrophic Epidermolysis Bullosa (her sub-type was classified as Hallopeau-Siemens – verdict is still out on that one). We’ve gone through several manifestations that come along with her diagnosis. So many things were told to us that we would be dealing with today. By the Grace of God, Jesus Christ and the Holy Spirit we have been able to somewhat live a very active and normally modified life! She plays like any 9 year old ~ swims, dances, sings, draws, skips, hops, colors, plays – you name it she’ll try it at least once!

One of these manifestations that we’ve known since day one that is inevitable is the continuous scarring, constricting and webbing of her hands. While wrapping them periodically and placing special bandages and primary dressing we have been able to somewhat “delay” the webbing process. A known fact is that her dominating hand – the right one – seems to be affected much more than her left hand. Her fingers have curled in and we’re having issues with her flexibility. However, through the years and the advice of many others out there that have been dealing with EB (specifically her type) we have come to understand that there are a few simple steps that can help the process of gaining some additional movement in the fingers that have curled in. One is after a LONG bath stretch those fingers out one-by-one for a few minutes every night. Between the warm waters and the soaking the skin loosens up a bit. Then there’s the wrapping in between the webbing space to create some form of suspension bandaging – overnight you can see the separation (and sometimes a bit irritated) that is created with the wrappings. This has helped in the webbing department – again not to completely do away with it but as most EB moms know delay it. Another “by chance” that I ran into through the years was the use of an all natural “sugar-scrub” that has helped in gently exfoliating the dry skin followed by the amazing Mary Kay Extra Emollient Night Cream. This nightly routine (scrub is used only 3Xs per week) has helped Bee’s hands look smoother and more toned than ever. All by pure luck – a mother’s sixth sense!

With all that goes on with Bianca’s hands I can tell you right now that she draws BEAUTIFULLY – her imagination is so vividly active that it allows her to use her hands in the same way that you and I can – no matter the restrictions that have been put upon them. She handles the remote like a true master – just like daddy. She has done dishes – only when she’s trying to be extra good to earn things and can wash her face. She can hold a rag in the tub while she takes care of getting herself all nice and clean. She can catch a ball and has a mean right-handed throw! She can grab her toothbrush to brush her teeth. Put on her school uniform in the morning and slip on her PJs at night! She is an amazing little girl regardless of all that has been placed upon her – I believe it has made her into this tough little spark!

Until next time…

Bianca's Right Hand - Webbing between the middle & index
She also did not have any skin on the top of this hand @ birth

Bianca's Left Hand - more flexible more plumply :) - had little to
no trauma @ birth



Bianca's palms ~ again you can tell the difference between her
right and left hand.