Luke's Legendary Liver League - Update

Great update on our little friend Luke!!! Luke's Legendary Liver League - So happy for this fellow transplant family and this little warrior Luke who is SO STRONG.

DOnate LIFE so miracles like this can happen, encourage those around you to choose YES too.

Transplant is amazing, brutal, beautiful, crazy and possible because of those who give selflessly and those who fight fiercely.

#give2live #DOnateLIFE #BGVT #thegoodstuff #sliverofliver

 

Luke's Legendary Liver League added 4 new photos — with Lauren Pate Morris and Jason Morris.

May 17, 2016 · 

Well Liver Leaguers...Prayers have been answered once again!!! 💚🙏💚

It was a long but super successful day in Cincinnati for us today! It started with an Echo to check up on a few heart issues Luke had developed with his liver disease. They were issues that were serious enough to continue to be monitored, but we were assured the whole time that after transplant they should take care of themselves and that they did!!! So after our trip to the heart doctor, we traveled down to see our phenomenal liver doctor and prayed she would like the lab results from yesterday as much as we did. Good news: she loved the results... Great news: she pulled the PICC line from Luke's arm!!!! After 7 months, we are officially 100% TUBE FREE!!! Wooooo hoooo!!!! So with the PICC out, she also took away one of his meds and reminded us that we are 80 DAYS POST TRANSPLANT!!! WHAT?!?! How is that even possible?! We are getting closer to being out of isolation and living a more normal life as well which is absolutely amazing!!! He has come such a long way.... We are so incredibly thankful and blessed 💚💪🙏💚💪🙏💚💪🙏💚💪🙏💚

Update: 05/13/2016

This GUY is ONE tomorrow. How did you celebrate your 1st birthday? Mine was with cake, some family and a couple party hats. Totally typical.

You all know what a big deal this day is for us. for me. for Brodie. I thought I was going big with having a party with more than family - "WILD ONE" themed....

Well of course that wouldn't be enough.... Not for this little warrior.

Much to my surprise a LIMO (yes a LIMO from Safe & Reliable Limo Company) pulled up to our house - right behind them???? WKYC Channel 3 - Cleveland and Dawn Kendrick Reporter was coming to surprise us with a 1st Birthday surprise fun for our little B-Man.

The limo was filled with littles to help Brodie celebrate - I had no. idea. what. was going on. Behind the scenes there was the most amazing surprise planned by A Special Wish Cleveland Chapter.

We were whisked off to SouthPark Mall and then led to Build-A-Bear Workshop where the amazing team there was in on the surprise - a private party for BRODIE'S FIRST BIRTHDAY!

A Special Wish Cleveland Chapter has inducted us into their "family" of families as their "59th local Cleveland family". This amazing LOCAL non-profit organization will grant a wish for a child from birth through 20 years of age, who has been diagnosed by a physician as having a life-altering disorder. www.aspecialwishcleveland.org

As Brodie gets older he will receive a special wish that they will treat him to for his crazy and miraculous 1st year battle (with the rest of us in tow of course ;-))

Once again I find myself humbled, overwhelmed and blown away both kindness.

My gift to my son - "My SLIVER OF LIVER"
Cleveland Clinic Children's Transplant gift - LIVE ORGAN DONATION & TRANSPLANT
Cleveland Clinic Radiology Intervention - BLOOD CLOT BUSTED
Brodie's Good Vibe Tribe gift - PRAYERS, GOOD VIBES, INTENTIONS, JUJU
God's gift - MIRACLE OF LIFE

All have been enough to last us a lifetime (hopefully and literally) anything more than that makes us feel undeserving and overwhelmed and amazed by kindness and generosity.

We hope and pray that we can raise awareness, give hope, provide people with knowing what the power of positivity and prayer can provide and tell people to LIVE LIFE FULLY and LOVE and OWN your STORY.

Our little warrior teaches us this every day (or every hour if you are his crazy mama).

We cannot wait to watch him live out his journey we hope you will stay with us for the ride.

TUNE IN TONIGHT WKYC at 11PM to SEE TODAY's HAPPENINGS and PARTY with your BGVT spirit!

#brodiesgoodvibetribe #BGVT #sliverofliver #TIGUEtough #theGOODstuff#thereallygoodstuff #DOnateLIFE #give2live

Update: 05/05/2016

Update: Things are calm. Things are uneventful. Things are happy.

We visited our vein whisperer this week - Big John. Labs were good. Repeat in 2 weeks.

Next week ultrasound with Dr Sands and a date with Dr Hashimoto.

Russ and I celebrated 8 fabulous years of marriage this week. Thanks to my mama we were able to sneak away for a quick dinner.

And in 9 days. Brodie is 1. Eek!

Brodie is so very good. He is happy. He seems to be thriving.

B-man is enamored by his big sissy - like lives to see what she is doing. Then he gets angry because his little 11 month body cant go as fast as her 4 y/o maverick self can.

The Bro-Meister took 3 steps this week - on accident - he was watching Harper twirl around in a homemade blanket toga (made by yours truly) dancing to Little Mermaid and he was so excited by her twirling around he just kind of ran and then realized his little hands weren't entwined in mine and fearfully collapsed.

And as we laugh, dance, soothe baby needs, rock to sleep and give in to the regularity that you succumb to so quickly as you gracefully fall into your routine.

You, we, I can so quickly get swept up in day to day that you forget. You forget. Yes really. You forget. Maybe intentionally. Maybe instinctively. Maybe because it seems so surreal.

The sunset was unreal tonight - I always call the sky "God's Art" (wouldn't it be fun to have the sky as your messy canvas?) it was epic tonite - Harper, Brodie and I sat in Brodie's bedroom and said prayers watching the sun sink into the horizon.

Tonight I just choose to forget. Enjoy the smiles. Enjoy the regularity of this little family life we created. Enjoy the gift of life.

This weekend Russ and I will have a night out - we are going to the Cleveland Clinic Children's Gala.

Celebrating life, the talents of Cleveland Clinic, other Warrior stories (i can't wait to be inspired) and BGVT.

I rambled. I didn't mean to. I just meant to say things are good.

XO - TT

#BGVT #Brodiesgoodvibetribe #sliverofliver #theGOODstuff #TIGUEtough#DOnateLIFE #Give2Live

Maroon for Maisie Update

Have you been keeping up with Maroon for Maisie this little amazing bundle of courage is epically fighting her way (and winning and smiling) through her Bone Marrow Transplant. This little wonder, her family, maisie's interactions with Cleveland Clinic Children's staff and their journey is incredible - SHE is something to be inspired by this little 5 y/o fighter. Just want to shoot her some #BGVT love. Gooo Maisie Goooo. #DOnateLIFE #givetolive #bethematch #BGVT #thegoodstuff

Update: 04/27/2016

Update: 04/27 - Just. Cannot. Cannot. Cannot. Cannot. Last week was outshined by Brodie’s surgery and I wasn’t able to share with you all the significance of what it held. We are SIX SEIS SEKS months post transplant.

“Take pride in how far you have come and have faith in how far you can go.” I remind myself as I whisper every morning to Brodie – you are brave and you are strong – go warrior go… Not a day goes by that I am not grateful for every step in our journey.

Yesterday was so special for us because we knew we would see everyone (with a couple of surprises).

I got to remind them that as serious as our follow ups were there was also reason for celebration 6 months post transplant baby!! WOOP WOOP!!

Y’all think I am crazy. I know you do. Drs visits fun?!? But this amazing bond happens with the people who care for your family through this.... So I can only illustrate what today was like…

Walking out of the elevators onto the 10th floor of the A bldg. at Main Campus at Cleveland Clinic – I am always nervous and excited – We are about to see our people.. this is the “general surgery / transplant floor”…

I have met some pretty spectacular, amazing, incredible people who are employees and patients here on this floor. I have learned so much, been so inspired by peoples’ stories, been lifted when I was scared and felt alone – but others openly shared their journey and hope with me.

Jeanene – our favorite “welcomer” – makes us smile and laugh and feel so special – greets us with a whoop and a warm hello. Our little trio quickly turns into a little group as more people come to say hi filled with hugs, high fives, excitement and disbelief about how well (and big) our little warrior looks.

After we disengage from the front office we get shuttled into a room and Dr. Hashimoto and NP Tichy-Dreher comes in – I can’t. these two. My heart swells and they look over the “patient” Brodie in between getting sucked in by his giant toothy (up to seven) grin, his chunk cheeks (which I now tell people have been zoned for their own zip code) and hilarious skepticism (check out the pics) and then realization of the love.

Then a knock-knock on the door and “my guy” aka my surgeon- Dr. Quintini walks in to say hi! – I reminded him that 6 months ago I was probably being high maintenance mama drama on morphine and he smiled and reassured me I was not (maybe – ha).

More visitors, more well wishing...

Brodie and I had to abruptly peace and hair grease our way out of there down to the basement to go get our Ultrasound to see how Dr. Sands’ handiwork was looking.

We checked in with Jennifer who is always smiling and helpful, got our pager and took a seat. Brodie was in the mood to entertain others by loud pterodactyl screams and outbursts in between cheerio binges.

I look up and none other than THE Dr. Sands himself is coming to escort us to the u/s room. This man is awesome.

What a surprise! He re-adjusted his day to come and see how B-man is doing. We catch up quickly on our brisk walk and get to the darkened room for the inspection on the stent situation...

Rachel our u/s tech does not waste any time she jumps right in and Dr. Sands instinctively starts evaluating what he sees.

As the ultrasound begins you find yourself sweating like you are in 5th grade gym class again… Will they find everything is okay? Will there be an issue? And as black and white and colorful visions play out on the screen. You wait.

Within the first 5 – 10 mins Dr. Sands reports that things look well. Very Very Good.

I am so so very very relieved, happy, ecstatic, amazed that once again. Sheer relief washes over me.

We have made it. Once again we have made it. We have made it.

A knock – knock on the door and one of our favorites is coming to say high to us – Angie – just to see little Brodie and thank goodness she was there – he literally is in love with her – so it distracted him for awhile... but he was NOT being a star patient for the U/S.

After that u/s we then went back to see our “liver guy” Dr. Radahkrishnan – this went smooth Brodie was a wild man at this point and a little rambunctious but Dr. Krishnan like a pro played with Brodie throughout the appointment…

He answered my questions about sunscreen – was there anything he couldn’t use? No.

Brodie is about to switch from Breast milk (I am done pumping y’all – and it is great!!) I have enough frozen milk to last another couple weeks – Boom one year down!) to whole milk is that a problem? Nope you are good. The only dietary restriction is grapefruit.

Our appointments are turning into monthly appointments, our lab work and ultrasounds are now every other week and we have 7.5 weeks of shots left (hopefully).

On the way home I reflected... I have so much respect - pure deep rooted respect for those who are involved with the medicine world.

It made me deeply breathe and really think about everything. These teams, these individuals who have sacrificed so many things to dedicate their lives to helping others. Helping others re-start life.

I can only imagine some of the beautiful endings they have helped write as well as stories they wish could be re-written…

I then wondered what it must be like for you to literally watch your work that your hands and care were responsible for… and know life is being lived that you have partial responsibility for that.

How powerful. How very special.

Which leads me to me...

Right now. Here.

I am giving myself permission to breathe, live life, give, love, reflect and not worry about the what ifs and could bes.

Because right now.

We once again, with our army - our front line at Cleveland Clinic Children's, with our faith, with BGVT spirit running through our souls, with our warrior’s resilient amazingness.

We have risen. We have conquered. We have defeated.

Proving this life, this precious life is worth living and embracing every brutal beautiful magical moment.

XO - TT

#BGVT #theGOODstuff #TIGUEtough #bloodclotbusted#6monthsposttransplant #sliverofliver #brodiesgoodvibetribe#DOnateLIFE #give2live

Update: 04/26/2016

Update: 04/26/16 - Here we are 1 week post Interventional Radiology Procedure – an eight hour procedure that put three stents into our little warrior. I am so so happy to share with you all that he is doing incredible.

This week has been a whirlwind – Brodie was probably back to his little self about 3-4 days after the surgery… Mostly set back from anesthesia and being intubated than the procedure… Harper on the other hand took about 4-5 days to recover – this last surgery or the “mini-surgery” threw our little 4 year old for a loop.

Harps was “googly eyes gone to crazy tater tot land” when Brodie and I got back from the hospital – she was sleep deprived, sugar filled and scared about when her brother and mama were going to be home.

I am happy to report we are all finally I think almost recovered.

The life of C’s has been our “wheel of life” as of recently – Choices, Chances and Changes… The variation of these three words I will use tonight is “We made a choice to take a chance and our life forever changed”

Tomorrow we head into Cleveland Clinic to get an ultrasound with our favorite group of U/S Techs to see how that darn Portal Vein, Blood Clot, Stents and Liver are looking…

And then we will motor on over to Cleveland Clinic Children's to see our favorite Liver Dr. – Dr. Krishnan, fave Surgeon Dr. Hashimoto, fave NP Cathy Tichy – Dreher and the whole gang.

Send us good vibes as we evaluate how everything is settling, adapting and morphing into Brodie’s little liver.

Oh and here is something... Our little fighter... This little warrior.. will be busting through and taking on ONE. First bday is in 18 days!!!


XO – TT

#BGVT #brodiesgoodvibetribe #sliverofliver #TIGUEtough #DOnateLIFE#give2live