Update: 01/19/2017 - Cleveland Clinic - Dr. Adrienne Boissy

"Be the Change you want to see" On this journey being thrust in a medical system experience is defined by many things - people, places, communication, relationships, etc.

i have been invited to serve as a volunteer and a voice of the patient population for Cleveland Clinic Children's on the parent engagement committee.

Last night I was sitting in a workshop put on by Cleveland Clinic Chief Experience officer - Dr. Adrienne Boissy - "Disruptive Innovations Experience" - talking about things the Clinic are doing from the top down to create a better patient experience - the things that are broken, the things that work and the things that need to be created to serve our needs as patients.

Dr. Boissy was insightful, funny and real - she shared such a powerful statement - "Our greatest work is to make what is invisible visible. To Make people who feel unseen seen."

Healthcare and healthcare organizations are not perfect and to craft the perfect system is practically impossible - "but if we let go of patient centered practice and let human centered focus gravitate to what is natural we may find relationship centered care. "

That is the care that I feel like we have had the whole time with our liver transplant team and GI team - my goal is to help with imperfections to help craft and create that experience for other parents, families and advocates.

#BGVT #bethegooddolife #DOnateLIFE #brodiesgoodvibetribe#TIGUEtough #sliverofliver #biliaryatresiawarrior #thegoodstuff #give2live#organdonation #biliaryatresiaawareness

Amazon SMILE - BGVT Style

You know if Amazon has it - it exists! Check it out! This is so exciting. Shopping this week? Don't forget to support #BGVT If you use Amazon Smile .5% of your purchase can potentially be given to #BGVT - with NO ADDITIONAL COST TO YOU! What is AmazonSmile?
AmazonSmile is a simple and automatic way for you to support your favorite charitable organization every time you shop, at no cost to you. When you shop at , you’ll find the exact same low prices, vast selection and convenient shopping experience as , with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. You can choose from nearly one million organizations to support.

http://smile.amazon.com/ch/81-4042549

#BGVT #BEtheGOOD #DOlife #give2live #sliverofliver #tiguetough#organdonation #biliaryatresiawarrior #brodiesgoodvibetribe

Organ Donations at Record Level

One of the most amazing stories came to me - on my facebook page, in my messages and texts - ORGAN DONATIONS ARE AT RECORD LEVELS LOCALLY AND ACROSS THE COUNTRY. How amazing is THIS???

Friends - this is the greatest thing you could do for someone - living donation or the selection of gifting after passing away.

Here is a beautiful story of two local women here in Cleveland, both Mothers and because of a little SLIVER OF LIVER they are both here and so beautiful.

I got to meet my fellow SLIVER OF LIVER GIVER at the Transplant Games of America that we walked in this past June - Karen is selfless and amazing.

Both of these women got treated by our TOP NOTCH Liver Transplant Team at the Cleveland Clinic. We are so very lucky to have this RIGHT in our backyard.

There were 33,600 transplants in 2016 according to United Network for Organ SharingCleveland Clinic and Cleveland Clinic Children's did a WHOPPING 152 LIVER Transplants - that is just LIVER. That is both adult and pediatric - AMAZING.

Tell people our story, your story, tell people WHY they should support the gift of life. I Love that this is trending upwards and it is because people are willing to share their journey that the numbers are increasing.

There are still 119,055 people - humans - mothers, fathers, babies, sisters, brothers, grandparents - waiting, hoping, praying for a life-saving gift.

BE THE GOOD. DO LIFE.

#BGVT #bethegooddolife #DOnateLIFE #brodiesgoodvibetribe#TIGUEtough #sliverofliver #biliaryatresiawarrior #thegoodstuff #give2live#organdonationawareness

http://www.newsnet5.com/…/organ-donations-at-record-levels-…

Update: 01/04/2017 - The Holiday Catch Up

Update: 01/04/2017 - And just like that – we have blinked at we are in 2017. Days have passed and minutes have flown by – we have been drowning in red, white and green Christmas festivities and New Years Eve Celebrations and Oh yes – a BIG Whole Hand Birthday celebration with Harper – she has found her way to five some how (how did this happen so fast????)

Remember last year we were in lock down quarantine mode? We celebrated Christmas but very differently – because Brodie needed to stay away from germs big family gatherings were something that we opted to stay away from. So our Tigue Tribe of Four parted into two peas in a pod – someone snoodling little man at home and someone adventuring with little lady.

This year we were overwhelmed by the ability to be with everyone and just BE. Celebrate the reason for the season and appreciate one another.

We started off going to church on Christmas Eve and I have to tell you EVERYONE by the end of mass knew we were there. You see, remember how I have told you Brodie has mastered pterodactyl screams – well he also has mastered – cows, horse, lions, dinosaurs, dogs, monkeys, etc. and as we were singing Christmas Hymn after Christmas Hymn in between when there was complete silence or someone addressing the congregation Brodie was bellowing out as loud as he could these well mastered animal noises.

Russ was clutching him on his lap looking at me bewildered and I kept hissing – GO TO THE SEA ANIMALS! GO TO THE SEA ANIMALS! HAHAHAHA – no dice. Brodie just wanted to be on the farm or the jungle. YIKES! One of my friends came up to me after and said – I see Brodie also got your lung power Traci – Oy Vey – yes, yes he did.

Someone once told me what makes church alive are the littles who make the noises and create the atmosphere of living and being a part of what church is all about – I am 100% choosing to believe ALL of that.

Brodie has been doing so very well – his little liver is spot functionality wise there have been no problems. We were able to decrease our anti-rejection medication dosage and we are still on Bactrim which is preventative for infection, aspirin and good old iron. All of this is such routine that I don’t even bat an eyelash at it any more – Brodie is a champ is sucks it down in an instant and is on to the next thing.

His little thighs are still bruised (from the Lovenox shots) – the bruises are very deep they say that it might take another 6 – 8 months to heal. I will be so thankful when those have dissipated and all I have are the memories etched in my mind that I can store away.

I find myself lost in thoughts sometimes wondering how I have gotten through this past year – but with an 18month old and a new 5 year old I don’t have much down time to think – and who wants to stare in the rear view mirror?

We are still monitoring that blood clot in his portal vein that was treated with three stents – we will have to have a procedure later on this year to open up some of the stents. He was 20lbs when he got the stents in and now he is over 32 LBS (14.5 KG) LINE BACKER Y’ALL he is GINORMOUS.

The beginning of next week we are going in for a non-related procedure – Adenoid removal. Has anyone every been through this?

We are getting nothing else done (a lot of the times this surgery is paired with ear tubes or tonsils) we are just getting the little adenoids (adenoids are glands located in the roof of the mouth, behind the soft palate where the nose connects to the throat). Brodie’s are GINORMOUS – just like him so he cannot breathe through his nose. Poor little nugget.

We will be getting this done at Cleveland Clinic Children's so I know we are in great hands – any time your child has to be put under is never a good time and your mind races and your heart skips beats and then beats faster the whole time you are not with them.

Anyways, that is the latest and greatest on our little warrior – he is amazing.

Him and his big sister are a dynamic duo – he wants to do EVERY thing she does ALL the time. She is an amazing big sister I always tell her – your job as a big sister is to protect, help and love your brother.

She succeeds at ALL of those things however, there this desire in her that just wants to do her things in peace i.e. play with dolls without them getting hair ripped out, build blocks without them getting destroyed, play with her camper without it getting ripped apart – you know playing without the terrorizer lurking in the background! HA! #bigsisterproblems

In the most affectionate way possible – he is a crazy little maniac who is into everything and everyone – thriving on attention and demanding all-day-love our little liver warrior is a crazy, healthy, maniac who #cantstop#wontstop all day long.

Rocking him to sleep tonite I watched his big heavy beautiful brown eyes blink over and over fighting sleep every step of the way and I felt thankful and sad and happy and blessed.

Time goes so fast. Last year seems so far. When can you find time to get a handle on it all??

We definitely have crossed into the “sweet little cherub baby phase” into the “I am a little human who loves to explore and get into everything phase”.

As frustrating as this stage of parenthood is - How can I get mad at someone who has fought this hard to live and has learned to fight for everything since he has been 3 months old? Answer: You can’t. Well….. as long as he doesn’t spill my wine – HA!

Cheers to you all.

Our amazing Tribe – Merry Christmas, Happy Hannukah, Happy New Year – it is one of my new years resolutions to continue living life with you all – sharing our life journey – even if it is not liver related.

#BGVT #bethegooddolife #DOnateLIFE #brodiesgoodvibetribe#TIGUEtough #sliverofliver #biliaryatresiawarrior #thegoodstuff #give2live#organdonationawareness

Life Long Term Impact of Heart Transplant Recipient

I often wonder the long term life/career plan and how our liver journey will route or re-write what Harper and Brodie, cousins or friends littles will do when they grow up.

Many of the medical teams We have worked with been impacted by something and someone in their life for them to integrate into medicine.

When we were going through Brodie's testing one of the drs said to me - this will change so many things - one will be you and your families thirst for knowledge and advances in medicine - your children will become astutely aware and interested and that will forever change their path. They may even go On to practice...

https://thriving.childrenshospital.org/happy-birthday-to-my-heart/

Here is a short story that is all about heart and medicine and being inspired by life's events.

#BGVT #bethegooddolife #DOnateLIFE #brodiesgoodvibetribe#thegoodstuff #give2live #organdonation

Update: 12/16/2016 - B-man Update

This little fella? He looks sweet and buttery but he is 100% rough tough and made of super stuff (32 lbs of it)... We had labs and a check up on Monday at Cleveland Clinic Children's - Everything looks fabulous. His little liver is perfection and so is he 💗👍🏻💥... Bigger update to come but just wanted to say hi! #BGVT #bethegooddolife 
#DOnateLIFE #brodiesgoodvibetribe #TIGUEtough #sliverofliver#biliaryatresiawarrior #thegoodstuff #give2live

Update: 12/09/2016 - The Truth about Liver Cells

"In 1985 it was told to us that the liver cells could not regenerate." That was a little over 30 years ago. Look how far we have come. Now we know after live liver donation it regenerates entirely. @alf_heartland put on a great educational panel with experts from NEO - Are you an organ donor? Check yes! Support organizations to fund research and development so we can come even further! #BGVT #bethegooddolife #DOnateLIFE#brodiesgoodvibetribe #TIGUEtough #sliverofliver #biliaryatresiawarrior#thegoodstuff #give2live #organdonation

Update: 12/04/2016 - United Airlines Fantasy Flight

Let me tell you about last night.... We took off to the "North Pole" probably the most amazing thing ever... As part of the United Fantasy Flight...#UAfantasyflights

Basically we just experienced one of the coolest things i have ever witnessed in my whole entire life.

We flew to the North Pole - it is appx a 90 minute flight from CLE (from take off to landing).

The flight includes elves that carol, delicious Mac n Cheese, Chicken Fingers and Mrs Claus' cookies.

ALL of the kids were amazing. Not one little was crying. For real. Laughing with nervousness, screaming with excitement, quiet with stewing anticipation. Incredible.

You are NOT allowed to have your windows open upon landing simply because Santa demands privacy and we need to keep his secrets to preserve Christmas. Everyone obeyed.

The flight landed. Everyone cheered and screamed. No one pushed, no one shoved - no one rushed everyone in the plane aisle To get out first - everyone was in it together to walk out to see what the North Pole was like...

We exited at the gate - cold air greeted us - icicle lights strung, elves cheering and we walked out to a tunnel of cheers, clapping, smiles all on princesses, super heroes, mascots from Cleveland Indians and Cleveland Browns, elves and it was incredible.

(This is where I am sure I didn't breathe for at least 2 minutes. Tears melted down my face as I watched the bewilderment and sheer shock on Harpers face. Russ carrying the warrior behind me - Brodie was basking in all of his glory clueless and amazed).

We proceeded through the tunnel in discovery mode and (exited into a Gate remodeled to be the NP) - explored to see what the North Pole entailed - games, crafts, food, photo booths, santas workshop, santas & mrs claus photo station, stockings hung on the wall with care for each little child who was there, piles of presents for each little kid, carolers, face painters, balloon makers - you name it.

15241402_1815624998697184_6643689689006851296_n.jpg

Singing, laughing, playing, running, coloring, staring, eating, smiling, dancing, waiting, watching - no crying (I am not kidding - none).

From station to station - character to character - dreams were made, memories created all laced with a sweetness that I have never experienced.

As meltdowns began to ensue one by one families excused themselves and disappeared into the night...

In order to begin your journey home - you were sprinkled with fairy dust that transported you back to the airport.

17 families from Cleveland were selected and invited to go on this amazing journey. All with medical journeys and stories from different medical institutes. But tonight they just got to enjoy life - wheelchairs, oxygen, walkers, medicine, NG Tubes all aside - we were all there for the magic.

It was magical.

I cant tell you how overwhelming these experiences are for me. There are times where I often feel we are not deserving and there are others who should be in our place... There are times where I do feel that our fight is worthy of celebrations... There are times where I cant explain how I feel because it is so surreal... There are times when there are so many emotions that I am going through that I don't know what to call what I am feeling.

Please support charities, please support good, please help things like this happen.

@united - THANK YOU for an amazing experience. Thank you for the time, coordination, effort and labor of love you put together.

Cleveland Clinic Children'sUH Rainbow Babies and anyone else who had a hand on making this a reality - keep going. Keep doing it.

Magic has forever been imprinted on these families and on ours - the bewilderment, amazement, excitement and incredulous experience was simply magical.

On the way home Harper asked when we get to go back to the north Pole again - I laughed and said - this was a once in a lifetime opportunity...

Later as we were saying prayers and she was drifting off to sleep she looked at me with glazed eyes and said - "Mama tonight was so special... But the people there tonight were super special. Santa is pretty lucky to know them all."

All of us tonight have gratitude in different forms, come from different walks of life, have journeys that we are forging the way for - but tonight we were just visitors to a very merry place.

Merry Christmas to all and to all a good night.

#UAfantasyflights #bethegooddolife #believe #thegoodstuff #bgvt#sliverofliver #northpolefun

Update: 12/01/2016 - National Biliary Atresia Day

Today is National Biliary Atresia awareness day. BILIARY ATRESIA is underfunded, under researched and under identified. It attacks newborns and infants leaving paralyzed families with two options to treat: KASAI PROCEDURE which most of the time ultimately leads to LIVER TRANSPLANT (this as the other option).

This disease has taken the lives of many and continues to devastate families across the world when it should be the most joyous time – a new child in the world.

We are lucky, in most parts of the United States we have the proper hospitals to treat BA – in our case, the Cleveland Clinic Children's & Liver Transplant Team was in our backyard.

Through Brodie's Good Vibe Tribe story my hope is that you have been and will be able to educate others and if someone is struck with the unfortunate circumstance of their little being taken with this disease you can empower them with knowledge, our journey and other resources.

There is an organization that specifically focuses specifically on the liver – the American Liver Foundation. That was a critical educational resource during diagnosis and continues to be for us.

In October, The American Liver Foundation hosted the 12th annual Flavors of Northeast Ohio on Monday, October 17th at The Westin Cleveland Downtown. The event raised more than $119,000 for the ALF.

Yours truly, had the honor of partnering with the American Liver Foundation- Heartland Division as their LIVEr Champion. Brodie’s Good Vibe Tribe – Sliver of Liver Giver (this girl) was able to put a face and story to liver disease, and raised more than $12,000 for ALFs Fund the Mission – their biggest year to date!

(I have included a video clip of this – wouldn’t you know the memory ran out as Russ started filming so you only get the 2nd half)…

My personal mission to help with the R&D of Biliary Atresia, as well as supporting families going through the diagnosis and treatment is growing and developing BGVT.

“DON’T EXPECT CHANGE TO HAPPEN IF YOU DON’T MAKE ONE.”

I have struggled with this over and over – is this the right time in my life to do this? Can I really make an impact? Am I the right person to do this – I really don’t know anything about this world? The FLAVORS event was one thing that has fueled me to believe perhaps I am on the right path. It was an incredible opportunity to raise Biliary Atresia awareness with the 300+ attendees.

Then another opportunity popped up we were invited by the A Special Wish Cleveland Chapter to have a table at their princess ball event. We created a card making station to spread kindness to those who needed a cheer up and a smile.

The first person at my table was a Mom with a little girl – she looked at everything set up and said “Does this have to do with Organ Donation?”

I said yes, explained our story, she stopped and looked at me perplexed.

“I did the same for my son” she stated.

“When?” I gasped.

“18 years ago” she replied – “we were really an “experiment” at the time (meaning there were not a lot of cases that had a living donor to child). He is doing great.” she quickly followed up – “19 years old and doing awesome.”

Goosebumps. Tears. Lack of Words.

I have thought so many times about the bravery, the tragedy and the struggle of those who had Biliary Atresia strike in a time where medicine wasn’t so advanced, technology wasn’t so strong and knowledge was underdeveloped.

Here was a true pioneer on the front end of LIVING ORGAN TRANSPLANTATION who just happened to be the first person at BGVT table to randomly tell me her story. Coincidence??

The Alchemist has always been one of my favorite books – the author Paulo Coelho has some amazing ways of thinking and philosophy “And, when you want something. All the universe conspires in helping you to achieve it.”

I found myself then telling myself – if that is not a sign I don’t know what is.

Biliary Atresia is awful. It devastates the happiest time of your life. It rattles family to the core. It steals the innocence of a child in an instant.

Because of our medicinal world, because of technology, because of organ donation and organizations like Lifebanc and Donate Life America and Donate Life Ohio – it CAN BE TREATED and little Biliary Atresia Warriors are given a 2nd chance at life.

If you know someone going through this encourage them, let them know light on the other side is bright, normalcy resides and they too will overcome this.

To maneuver through the world of Biliary Atresia & Transplantation individuals must have the knowledge, desire and opportunities to treat and conquer.

Help me build a resource for others on our new website www.bgvt.org where we can story tell and create a place for people to learn about new beginnings and second chances.

#BGVT #bethegooddolife #DOnateLIFE #brodiesgoodvibetribe#TIGUEtough #sliverofliver #biliaryatresiawarrior #thegoodstuff #give2live#organdonation #biliaryatresiaawareness