Happy TOUGH Kids Day!

You AreA huge THANK YOU goes out to Moe’s in Alabaster, Al, for hosting both a fundraiser for OTK and 7th birthday party for Bryan Carr, our original TOUGH Kid. They went far and beyond the call to make it a wonderfully special day. Pictures are coming soon!

THANK YOU to everyone wearing blue and celebrating TOUGH Kids everywhere! Whether a child is fighting for life in the hospital, or struggling to live as normal a life as possible, they need to know their fight is not only appreciated but celebrated. Below are some pictures of supporters wearing blue today. And, feel free to use our cards to send to a TOUGH Kid, or even a TOUGH Parent!

bluecathy bluegracie bluekim bluemisty

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Celebrate TOUGH Kids Day 2015!

It’s that time of year again and we would love to see you at the Moe’s in Alabaster, March 1st from 11-5! Bryan celebrated several birthdays there and constantly asked for a Moe’s kids’ cup or chicken “MooMoo” while in the hospital. What better place to kick off our TOUGH Kids Day celebrations?

See you there soon!

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Photos from Tough Kids Tournament Gallery 1

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One Day Left! – last minute Tournament items

Thank God we are going to be blessed with such good weather! Dress accordingly and don’t forget the sunscreen (yes, even though it’s early March!). Here are a few items to note before arriving tomorrow:

  • All volunteers please arrive between 12:45 and 1pm for set up
  • All participants, registration is 1-2pm
  • Order of events: 2pm Welcome, 2:20pm Games begin!, 3:10 Groups swap (Indoor/Outdoor), 4pm Closing Ceremonies
  • We may have actual Tough Kids present, so be prepared to treat them as they heroes they are!
  • We are finalizing refreshments but feel free to bring whatever you need.

This will be a great day, and we appreciate your support and encouragement! A special thanks to the Calera High School Ladies Softball Team and Coack McCrackin for volunteering, Chelsea High School for soccer balls, Alabaster City Parks and Rec for various sports supplies, the YMCA for support and venue space, and Evangel Classical for promotional assistance!

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Daytime Alabama One Tough Kid Story

Here is the video of the @DaytimeAlabama sharing Bryan’s Story and One Tough Kid  Day and Tournament.   Thank you to Wendy Garner for sharing the story.

WVTM-TV: News, Weather, and Sports for Birmingham, AL

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CBS 42 Story

Thank you Mike McClanahan @MikeCBS42 for capturing the essence of One Tough Kid and Bryan’s story.

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One Week Left! Register Today

REGISTER, REGISTER, REGISTER!

Only one week left until the Tough Kids Tournament! Because we are equipped for a limited number of participants, please make sure you register soon to secure your child’s place.

This tournament will be a blast! Here’s a list of some of our competitions: basketball shootout, YCross relays, Wii competitions, soccer shootouts, strength challenges, and more!

Be sure to arrive between 1-2PM to pick up your registration packet.

And, don’t forget! March 2nd is Tough Kids Day! Remember to wear blue and honor any Tough Kids you know!

REGISTER HERE

 

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Marina Noelle Hall

Marina Noelle Hall was born Nov 22, 1994 in Poltava, Ukraine and spent most of her years in an orphanage. She was adopted in 2009 and lives in Birmingham, AL. She has 5 sisters and 4 brothers. She is a college student and has worked part-time with children at Covenant Classical School. She is the proud owner of a Great Dane named Maverick and a cat named Mia.

Marina Noelle was one of four teenage passengers in a tragic car wreck on September 13, 2013 near Chelsea. The driver was killed upon impact. Marina Noelle suffered multiple broken bones throughout her body, compound fractures, brain
hemorrhaging collapsed lung, as well as some memory and concentration loss. Her right leg was almost amputated. She has been on a journey of recovery with multiple surgeries, an Illizarov external fixator to support new bone growth and stability to save her leg and therapy to regain the ability to walk and range of motion on limbs. God’s hand on her life and the progress to this point has been very evident. She continues to rely on God’s strength for each day’s challenges as well as the future ahead.

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Gracie Poole

She stayed in the hospital the first 8.5 months of her life. The majority of that was in the ICU, literally on her death bed. She actually had to be revived twice. The ventilator saved her life yet did terrible damage to her lungs at the same time. She has numerous diagnoses, but lung disease & bronchial/trachial malacia are the major issues that make her ventilator dependent. We were told that she would not survive if we took her home from the hospital, but we decided to take that chance and take a huge leap of faith. We were also told that if she did survive she would most likely not have any kind of quality of life due to such high oxygen requirements and her oxygen stats staying so low so much and because of all of the drugs that she had to be given. They said time would tell if she would ever even TRY to talk, crawl, walk or anything! We were told she would not be able to talk because she could not tolerate using a Passy Muir Valve (which hooks to her tracheotomy to help a tracheotomy patient speak), however she was determined to be heard and participate in conversations without the valve and now she talks our ears off. You can understand 85% of it perfectly, the other 15% is difficult to understand just because she has a tracheotomy and all of her sounds don’t come out correctly.

Physically we were told she might not walk. Although she has very poor muscle tone, She walks everywhere, with the assistance of her AFO’s that have twista cables on them to help her hip rotation!! Now grant it she limps and has external hip rotation and leg/foot pain that comes along with walking, but she is determined to keep up with all her siblings.  She doesn’t realize she’s different. This is normal to her since it’s all she’s ever known. In the video she is at physical therapy at children’s hospital. Although she walks well, for her, they put her on the treadmill to try to build up her endurance. She doesn’t have much endurance at all and when she does get to go out she mostly is in her power wheelchair. She gets intensive physical therapy during about 8 months of the year. She cannot go to outpatient therapy from October thru January usually, because of germs and cold weather & generally those months are just much harder on her lungs. She stays most sick during that time and those are also the months she has frequent hospitalizations.  She takes 20+ medicines a day and numerous nebulizer breathing treatments as well. She’s has had too many surgeries to count. She has been put to sleep well over 100 times. She has been transferred to Vanderbilt and Cincinnati Children’s Hospitals for second opinions because her doctors have never treated a child with her issues and as complex as hers. There truly is NO earthly reason she should even be here much less doing the things she is doing. She has had two major lung surgeries within a year and functions on very little lung capacity. She only has 20% of her right lung remaining and on the left lung she has only 50% of the top lobe and 70% of the bottom lobe remaining.

Often I have people ask me “How do you do what you do?” The human side of me gets down and out sometimes and I admit I have thought “Why my child?” As parents we want to fix everything and it hurts me to see my child suffer like she does, but then on good days and to see her in that video I am reminded how overly blessed I am. Even on the worst days she is still here with me!! That is my biggest blessing and so we do what we have to do and we do it by God’s grace!!

I remember vividly praying, in the ICU waiting room the first time she coded, “Please God, don’t let me lose another child” (we had a precious stillborn, Malachi, two years before I had Gracie) and then it was like a calm came over me and I truly realized for the first time ever, I think, that God loves her FAR more than I could ever fathom. Then I quickly shifted my prayer and I prayed “Please don’t let her suffer more than necessary just to keep her here with me. She is Yours, Lord. Please take her now, if that’s Your will.” By far, that was the hardest prayer I have ever prayed, but it took that day to truly make me realize I have only been “loaned” all of these precious kids I have!

Gracie truly is a modern-day miracle. She remains a very critically ill child and has a long road ahead of her, but by GOD’S awesome grace we continue to walk this road with her, the road that HE has already gone down before us!”

Most recently, in January, we were told that the time had come that we needed to be referred to Texas Childrens Hospital in Houston, to be placed on the donor list for a double lung tranplant. Currently we are in the process of getting financial consent for her to be treated out of state. When financial consent has been obtained, we will go to Houston for a 1 week period for testing, interviews, information, etc.. During this time we will also be looking for a place to live. Gracie and I will have to actually move to Houston and be residing there before they will place her name on the donor list-because we will be assigned a beeper and we have to be able to be at the hospital within 1-2 hours of receiving the word that lungs have become available. We have just begun down the road of fundraising and are trying to bring awareness to the events being planned. Gracie’s daddy, along with my mom, will stay behind with our other 4 children. We cannot begin to fathom the expenses of being financially responsible for 2 houses, double the bills, traveling expenses, etc..

More importantly we are tyring to raise awareness of Gracie’s health concerns, so that more people will be praying for our sweet miracle. We have a super long road ahead of us.

If you want to, please include her Caringbridge website. That way people who want to keep up with her progress or who want to know how to pray specifically, can keep up with her at www.caringbridge.org/visit/gracieannpoole<http://www.caringbridge.org/visit/gracieannpoole>. She also has a facebook page for support and info on fundraising efforts, it is “walking by faith with gracie”.

Thanks for considering sharing Gracie’s story.  I love to hear how Gracie’s life blesses others. I often think, that is why she is the way she is, to show GOD’s amazing mercy and grace. It makes my heart smile to hear how many lives she has touched. GOD IS GOOD!

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Addison Cox

Our sweet Addison was born in March 2008 with a genetic disease called ARPKD (Autosomal Recessive Polycystic Kidney Disease).  This disease affects other organs besides the kidney.  With Addison, this disease really affected her kidneys and liver in the worst ways possible requiring transplant for both of these organs if she was able to survive her birth and all the problems this disease would create.  Early on we knew God was watching over Addison’s life and guiding us through an amazing journey with her.  Ultrasound doctors kept answering our questions with “not for this child” when we first found out about her illness when I was 28 weeks pregnant.  But 6 years later, and multiple problems, physically – mentally – emotionally, our family has witnessed God’s hand on her life and we feel fortunate to love her, protect her and guide her to become as independent as possible for as long as we are blessed to do so.

Addison’s kidneys did not work at all at birth.  Three days after she was born both kidneys were removed and a feeding tube was inserted.  The kidneys were enormous in size making her stomach huge with this causing difficulty in breathing.  She was diagnosed with bronchial pulmonary dysplasia because of the kidneys not working in utero, too.  Ventilator was required for the first 3 months of life and many times as she has gone in and out of the hospital for various surgeries.  In addition to having her kidneys removed, Addison underwent surgeries to prepare her for dialysis.  This included hemo-dialysis port, peritoneal port and depo ports.  Addison’s first couple of years was in and out of the hospital, many times with dehydration and fevers.  At one year of age she underwent a shock after having a particularly hard time getting blood pressure and fluids stable.  Doctors gave us little hope of survival; and we didn’t see them for 10 hours while they worked tirelessly to stabilize her.  But, her strong spirit prevailed; and although she had a long road ahead to return to her normal, she did.  Addison’s doctors were the first to admit that Addison had a better doctor than they were watching over her.  Her illnesses were always complicated by the fact that she was on peritoneal dialysis.  We did the dialysis at home and was able to get it down to 10 hours each day.  We were able to get services through Hand-in-Hand with Shelby County that provided physical, occupational and speech therapy at home.  These therapies helped, but progress was slow.  Addison’s exceptionally large liver caused her stomach to be so large, she looked 14 months pregnant – which in turn, caused difficulty moving around and staying balanced.  Also, it was difficult to keep her fluids at a perfect level which caused additional problems.  Throughout all this, Addison kept working hard doing very basic tasks.

 

Addison started sitting up alone at 20 months of age.  This was a turning point for her – opening up her world and making her so inquisitive.  She never crawled; but scooted on her bottom everywhere to get around.  She was able to get a kidney transplant (from her dad) when she was 2 1/2 years of age. Kidney transplant went well, but she was unfortunate to have to return to surgery three times after this one week after transplant surgery due to bowel perforations that happened during her initial surgery.  She was in the hospital for 6 weeks during this period – going back and forth from Children’s to UAB and back again.  Addison continued to be a blessing to those surrounding her – doctors, nurses, aides, patients – as she would wave and smile as though she didn’t have a care in the world.  Around this same time, we realized Addison was having problems with her eyes crossing.  Eye doctor diagnosed a condition that required eye glasses which she wears and continues to do so as though they are a part of her body.

There are so many times that Addison has to be hospitalized that it has become hard to keep up with them.  She had a tonsillectomy, hernia repair, biopsy of lymph nodes, and multiple tests that required overnight stays.  She was in the hospital 9 times in 2012 due to random fevers requiring IV antibiotics.  She was diagnosed with Cholangitis that requires intermittent antibiotics.  She also was diagnosed with esophageal varices which has gotten so severe that she has been put on the Liver Transplant list.  Multiple medications are taken. Addison eats very little and will not drink liquids for the most part requiring feeds through her feeding tube.  We put her on continuous feeds throughout the night and bolus feeds during the day.

 

In October 2012, Addison started walking independently.  Her legs are still really small and short.  Before she started walking independently, she walked with the help of molded braces on her feet/legs as well as a walker that helped her feel secure.  She still likes to hold our hands on surfaces that are not level; with her big tummy it’s hard to keep her balance at times.  Addison has enjoyed 5 year old kindergarten this year being in a class with her peers enjoying her life with help from aides and fellow students.  She realizes that she does some different things (still wears diapers and having to have feeds through feeding tube); but she does not see that as a problem.  Her normal is a little different.  Her family and friends allow her to push the boundaries of doing all things that she can do and trying new things.  Addison has limitations; but accepts this and enjoys her life to the fullest.

 

In November 2013, Addison experienced a septic shock (again).  This time was caused by a 105+ fever caused by an infection in her blood stream.  She was put on a paralytic and ventilator.  For 2-3 days we were not sure, as were the doctors, that she would be able to pull through.  She displayed again her strong will to live.  Her transplanted kidney quit working, dialysis catheter was inserted in her leg to cleanse the toxins, fluids began, feedings stopped, blood clot formed at dialysis site, dialysis catheter removed, surgery to dissolve clot was not successful, blood thinners started, and low grade fevers resumed.  Just when we felt we couldn’t understand the magnitude of her problems, her kidney started functioning again little by little with each new day showing improvement.  Antibiotics helped with the phantom fevers and she was finally able to go home on 12/26/13.  She was too weak to walk and had to be re-trained to walk with legs strengthened with exercises; but she persevered.  She is close to being able to start back to kindergarten and with help will finish this year on a positive note.

 

I have touched the high points (and low ones) of Addison’s story.  There are many things that I may have missed; but Addison coming into our lives was no accident.  God knew that she would bless our family and those that she came in contact with.  My mother retired to help us with her when she came home from the hospital in 2008 and has mentioned many times that Addison changed her life.  She no longer worries about the future; but is thankful for each and every day with whatever blessings or challenges they hold.  Addison’s love of life – her life with all her problems – humbles you in a hurry.  While there are many hurdles yet to overcome with the Liver Transplant pending, potty training still on-going, feeding tube still being used, therapies needed to help catch her up in school, multitude of medications that Addison requires; Addison carries on as though she knows everybody has a different normal and she is going to enjoy hers to the fullest.

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