You cannot meet Tanner or his mom and not have your heart touched. Tanner is an almost 2 year old, special needs child with a smile and temperament that will melt your heart. Tanner's diagnosis is very complicated. He is unable to support his head and suffers from many seizures. He relies on his mom for his every need. His mom, Carrie, is one of the strongest people I know. She's a caring, selfless mother who always puts her children first. Carrie is a single mother of not only Tanner but a 6 year old as well. She accepts the challenges before her with grace but Tanner's needs are becoming more involved. As he is getting bigger, everyday tasks like getting him in and out of the car or the bathtub are becoming more and more difficult for this petite mother.
Most people that meet Tanner instantly have the desire to want to help him in some way. I often have people approach me with questions of "what can we do" and "how can we help." As I've been given the privilege of getting to know this sweet family more, I can see there are some real needs for Tanner and his mother. One way that we as a community can help Carrie and Tanner is to help her purchase a special vehicle. Tanner needs a vehicle with a ramp for his wheelchair so that as he continues to grow he and his family won’t be hindered from getting out and about. A simple luxury that so many of us take for granted. Having this vehicle will also help Tanner be able to attend his medical appointments and therapy sessions.
After much research, a used special needs vehicle with a wheelchair conversion has been estimated in the range of $30,000 - $40,000.
So I’m asking you to please help with this cause. Tanner and his family need our help. Let's show this family how much they are loved by giving and supporting them but also by spreading the word. Please share this story with everyone you know. Share Tanner's story so that more people can have the privilege knowing how amazing of a child he is. Please spread the word and help us to reach the goal. Thank you in advance!
I've asked Carrie to share more about Tanner's story and her journey. If you'd like to know more or would like to bless someones life by sharing their story please continure reading below:
TANNER – My Sunshine
I am Very Proud of our journey, and Tanner’s Story; and, would love to share it! To say it has been ‘hard,’ would be an understatement! But, the beauty and richness gained in my heart has been well worth it! And, I wouldn’t trade his life, or our journey for the world! I love these scriptures; and, over and over, throughout the past nearly 2 years - I could have stood on a ‘roof top’ and claimed – I get it! Roman 8:28. Jeremiah 29:11. Matthew 25:40. Genesis 1:27. Psalm 139:14. Romans 5:1-5.
Tanner was born on January 31, 2013. He was 35 wks old, but presented as a healthy term baby. And, we were discharged to home as normal. Within 3 days, I noticed some unusual behavior – which is when my new ‘normal,’ challenging, yet rewarding journey with Tanner began. We started getting answers when he was 2.5 weeks old. First, came the word seizures. Then, multiple tests and procedures were performed; with them all coming back as normal. We were not getting answers as to what was causing the seizures. By the end of his 3rd week of life, he was on the ventilator in the PICU, with a continuous EEG monitor attached. For 4 days it revealed his brain to be having continuous spikes, followed by a long flat line. This was difficult for me to watch – knowing in my heart, it was very bad. On Monday February 25, 2013 the head of the pediatric neurology department gave us a very dreaded diagnosis. At the time, it appeared that Tanner had what was known as Early Infant Epileptic Encephalopathy, or Ohtahara Syndrome. When I googled this- I immediately prayed for the Lord to take him home. He had been fighting seizures around the clock since a few days after birth. It finally took a hard drug to stop them, which is what lead him to needing the ventilator to breathe. The diagnosis given at this time is a progressive neurological disorder - in which his doctors and I would have been chasing seizures for the duration of his life. With that in mind, I gave him a DNR status……
God had very different plans for this little man. He came off the ventilator and began breathing on his own. We were transferred to a step down floor. And, while there, we worked on the right medication regimen needed to simply keep seizures at bay, or to a minimal. We worked on feedings also, which required him needing the NG tube… In addition, he had about 4 more EEGs over the next 3-4 weeks that did not look favorable. During this time one of Tanner’s neurologists said something that I would not forget. “It will be a ‘wait and see,’… and y’all taking life one day at a time- which isn’t this the way we should all live. No one is guaranteed tomorrow,” he said. He also told me, I could have all the Hope in the world! And, with this Hope, I would be able to care for Tanner as needed. HOPE would be the driving tool to keep us going every day. He was about seven weeks of age, when we were discharged to home with lots of medical equipment. This is where my years of training as a nurse paid off… I had a little NICU set up for him at home. We had to make multiple trips to the hospital over the next couple of months regulating seizure medication.
At nine months of age, after being about four months seizure free, Tanner had a really bad seizure. I had to perform CPR for the first time in my career, and back to the hospital we went. During this hospitalization, I met with several of his Doctors including his neurologist, and palliative doctor. They formally removed his diagnosis, and let me know there was no way to predict his future, since his diagnosis was unknown. By this time in our journey, I had already become overwhelmed with gratitude, joy, and peace! Tanner had begun smiling like an angel from heaven; and, this made me feel like he had won the Heisman, over and over again! I had also learned by this point, that some mothers don’t have the privilege of getting to witness their baby smile. How spoiled and fortunate did I feel! I assured the doctors in this meeting, I had no expectations. My prayer was just that he would not regress!
This last year has been me learning the best way to care for Tanner, my special needs angel, and the rest of my family. I am a single mother, who also has one more precious son. He is an active, Fun-loving six year old, who keeps me on my toes! For now, I am the ‘nurse’ of only one patient- Tanner; and, we are continuing to take life a day at a time! In June of this year, Tanner got a g-tube. It has made medication administration throughout the day, so much easier for him and our family! Also, the g-tube has kept us out of the hospital on a number of occasions. Praise the Lord! Tanner does take his bottle, and those who see him, know he is not malnourished! Ha! He is a big boy! I also have all the medical equipment I need at home on days when he is not coasting. He has had only nine seizures this year- and, that is a God Thing!!! He continues to improve, and grow everyday! Slowly, I am trying to wean him off from watching his favorite, Mickey Mouse, so much! lol… I believe emotionally, and mentally, he is further along than he is physically… To date, Tanner still cannot support the weight of his own head, or trunk. Nor, is he able to purposefully use any of his extremities, yet. ;) He also has difficulty swallowing in an upright position, so we are working on that challenge as well, to make sitting in his wheelchair a favorable experience for him. Everyday is different, but incredibly beautiful and rich! I truly, would not trade my life for the world!
Tanner has been the agent God has used most in my life, to teach me that His plan is for today!!! EnJOYing the Journey! So many people have told me, God has big plans in store for us… but, my heart sings – Today is the Day! I am living His Plan Every. Single. Day! Today is the day to find purpose, gratitude, joy, and rest in…! To know that loving my Two Boys, and taking Care of Tanner, who can do nothing for himself- is God’s Plan! I truly cannot imagine more! I am reminded that our greatest need is Love! And, that is my prayer - that both of my boys, know they are Loved!!! I have said this before, my life has been transformed for the better; and it has been through a child, who has not spoken a word! I never dreamed of a special needs child being in my future – but God’s plans were different! And, I am still in awe of His love for Tripp and me. In allowing us to be Tanner’s family we have no choice but to gain enlarged hearts for getting to be a part of his life!!!
I have also realized the Power of Prayer! And, witnessed much love, through the hearts of my community, family and friends! I will never be able to say Thank you enough, for your love, prayers, and support!
Most people that meet Tanner instantly have the desire to want to help him in some way. I often have people approach me with questions of "what can we do" and "how can we help." As I've been given the privilege of getting to know this sweet family more, I can see there are some real needs for Tanner and his mother. One way that we as a community can help Carrie and Tanner is to help her purchase a special vehicle. Tanner needs a vehicle with a ramp for his wheelchair so that as he continues to grow he and his family won’t be hindered from getting out and about. A simple luxury that so many of us take for granted. Having this vehicle will also help Tanner be able to attend his medical appointments and therapy sessions.
After much research, a used special needs vehicle with a wheelchair conversion has been estimated in the range of $30,000 - $40,000.
So I’m asking you to please help with this cause. Tanner and his family need our help. Let's show this family how much they are loved by giving and supporting them but also by spreading the word. Please share this story with everyone you know. Share Tanner's story so that more people can have the privilege knowing how amazing of a child he is. Please spread the word and help us to reach the goal. Thank you in advance!
I've asked Carrie to share more about Tanner's story and her journey. If you'd like to know more or would like to bless someones life by sharing their story please continure reading below:
TANNER – My Sunshine
I am Very Proud of our journey, and Tanner’s Story; and, would love to share it! To say it has been ‘hard,’ would be an understatement! But, the beauty and richness gained in my heart has been well worth it! And, I wouldn’t trade his life, or our journey for the world! I love these scriptures; and, over and over, throughout the past nearly 2 years - I could have stood on a ‘roof top’ and claimed – I get it! Roman 8:28. Jeremiah 29:11. Matthew 25:40. Genesis 1:27. Psalm 139:14. Romans 5:1-5.
Tanner was born on January 31, 2013. He was 35 wks old, but presented as a healthy term baby. And, we were discharged to home as normal. Within 3 days, I noticed some unusual behavior – which is when my new ‘normal,’ challenging, yet rewarding journey with Tanner began. We started getting answers when he was 2.5 weeks old. First, came the word seizures. Then, multiple tests and procedures were performed; with them all coming back as normal. We were not getting answers as to what was causing the seizures. By the end of his 3rd week of life, he was on the ventilator in the PICU, with a continuous EEG monitor attached. For 4 days it revealed his brain to be having continuous spikes, followed by a long flat line. This was difficult for me to watch – knowing in my heart, it was very bad. On Monday February 25, 2013 the head of the pediatric neurology department gave us a very dreaded diagnosis. At the time, it appeared that Tanner had what was known as Early Infant Epileptic Encephalopathy, or Ohtahara Syndrome. When I googled this- I immediately prayed for the Lord to take him home. He had been fighting seizures around the clock since a few days after birth. It finally took a hard drug to stop them, which is what lead him to needing the ventilator to breathe. The diagnosis given at this time is a progressive neurological disorder - in which his doctors and I would have been chasing seizures for the duration of his life. With that in mind, I gave him a DNR status……
God had very different plans for this little man. He came off the ventilator and began breathing on his own. We were transferred to a step down floor. And, while there, we worked on the right medication regimen needed to simply keep seizures at bay, or to a minimal. We worked on feedings also, which required him needing the NG tube… In addition, he had about 4 more EEGs over the next 3-4 weeks that did not look favorable. During this time one of Tanner’s neurologists said something that I would not forget. “It will be a ‘wait and see,’… and y’all taking life one day at a time- which isn’t this the way we should all live. No one is guaranteed tomorrow,” he said. He also told me, I could have all the Hope in the world! And, with this Hope, I would be able to care for Tanner as needed. HOPE would be the driving tool to keep us going every day. He was about seven weeks of age, when we were discharged to home with lots of medical equipment. This is where my years of training as a nurse paid off… I had a little NICU set up for him at home. We had to make multiple trips to the hospital over the next couple of months regulating seizure medication.
At nine months of age, after being about four months seizure free, Tanner had a really bad seizure. I had to perform CPR for the first time in my career, and back to the hospital we went. During this hospitalization, I met with several of his Doctors including his neurologist, and palliative doctor. They formally removed his diagnosis, and let me know there was no way to predict his future, since his diagnosis was unknown. By this time in our journey, I had already become overwhelmed with gratitude, joy, and peace! Tanner had begun smiling like an angel from heaven; and, this made me feel like he had won the Heisman, over and over again! I had also learned by this point, that some mothers don’t have the privilege of getting to witness their baby smile. How spoiled and fortunate did I feel! I assured the doctors in this meeting, I had no expectations. My prayer was just that he would not regress!
This last year has been me learning the best way to care for Tanner, my special needs angel, and the rest of my family. I am a single mother, who also has one more precious son. He is an active, Fun-loving six year old, who keeps me on my toes! For now, I am the ‘nurse’ of only one patient- Tanner; and, we are continuing to take life a day at a time! In June of this year, Tanner got a g-tube. It has made medication administration throughout the day, so much easier for him and our family! Also, the g-tube has kept us out of the hospital on a number of occasions. Praise the Lord! Tanner does take his bottle, and those who see him, know he is not malnourished! Ha! He is a big boy! I also have all the medical equipment I need at home on days when he is not coasting. He has had only nine seizures this year- and, that is a God Thing!!! He continues to improve, and grow everyday! Slowly, I am trying to wean him off from watching his favorite, Mickey Mouse, so much! lol… I believe emotionally, and mentally, he is further along than he is physically… To date, Tanner still cannot support the weight of his own head, or trunk. Nor, is he able to purposefully use any of his extremities, yet. ;) He also has difficulty swallowing in an upright position, so we are working on that challenge as well, to make sitting in his wheelchair a favorable experience for him. Everyday is different, but incredibly beautiful and rich! I truly, would not trade my life for the world!
Tanner has been the agent God has used most in my life, to teach me that His plan is for today!!! EnJOYing the Journey! So many people have told me, God has big plans in store for us… but, my heart sings – Today is the Day! I am living His Plan Every. Single. Day! Today is the day to find purpose, gratitude, joy, and rest in…! To know that loving my Two Boys, and taking Care of Tanner, who can do nothing for himself- is God’s Plan! I truly cannot imagine more! I am reminded that our greatest need is Love! And, that is my prayer - that both of my boys, know they are Loved!!! I have said this before, my life has been transformed for the better; and it has been through a child, who has not spoken a word! I never dreamed of a special needs child being in my future – but God’s plans were different! And, I am still in awe of His love for Tripp and me. In allowing us to be Tanner’s family we have no choice but to gain enlarged hearts for getting to be a part of his life!!!
I have also realized the Power of Prayer! And, witnessed much love, through the hearts of my community, family and friends! I will never be able to say Thank you enough, for your love, prayers, and support!