Hero is spelled Dr. Jody!

Bobby thinks Dr. Jody ROCKS!!!

We just can't seem to find the right words to describe just how much "Dr Jody" means to our family.  She was the first one who really seemed to listen and validate the concerns I expressed about my son's development.  After talking with her about it one time, she got the referral in place to have Bobby evaluated by the Center for Disabilities and Development while others wanted to adopt the "wait and see" approach.  Thanks to her quick actions, Bobby soon received the tests he needed.  It was discovered that he has Holoprosencephaly and Cerebral Palsy.  Having these diagnoses allowed us to get the services in place to help him better progress in his development.  "Dr Jody" is always there for Bobby medically and has allowed us the privilege of being able to contact her at any time.  However, she has gone even further than that in that she is there for us emotionally as well.  There is no doubt in my mind that "Dr Jody" truly cares for Bobby and doesn't just see him as a patient.  The feeling is definitely mutual, Bobby always wants to go see her and says "I love Dr Jody."  She is an amazing person and we are wonderfully blessed to have her in our lives.  This nomination was submitted by MOM Tonya Seaberg, you can read more about Bobby's story at:

Coles Pages - Bobby's Story

HERO is Spelled Dr. Dehne, Nurse Gina & PT Margaret

Over the years as our medical team has grown and grown, I have come to realize that there are MANY hero doctors, nurses, therapists, teachers, social workers, clergy, etc.  I rely on our team for so many things, and every member is so wonderful with our daughter.  In honor of Cerebral Palsy Awareness Month I want to share a story about our Ortho and his nurse.

My daughter, Casey, has many diagnosis including CP.  She is not mobile and can not bare weight on her legs/feet.  She will be seven next month.  Her bones have gotten more and more brittle with each X-Ray.  We are so careful with her and have been able to avoid fractures for the most part.  However, a few weeks ago while loading Casey into our car to head to the hospital for her weekly PT her foot got caught.  It was a split second and she started to yell and cry.  Luckily we were headed in the right direction.

Instead of going to the ER where I knew we would sit and wait all day for them to check her out, I decided to call her Physical Therapist, Margaret.  I explained what had happened and that Casey was very upset and we want to get it checked out.  She told me to come on up to the outpatient area and they would get her checked out.  As soon as I hung up the phone Margaret called Dr. Dehne's (Casey's Ortho) office.  Dr. Dehne was not at the hospital, but his nurse, Gina was there and took the call.  Gina took it from there.  Gina got a hold of Dr. Dehne and told him what happened.  She had him write orders to get an X-Ray and that she would call him when the image was ready.  Gina then went over to records to get Casey processed for the specialty clinic they were doing that day so that she could get more than just PT services.  When we arrived (we only live 20 minutes away) everything was ready.  Casey went with Margaret and did some stretches while I gave them updated copies of all of our insurance cards and signed my life away (as standard practice with all medical appointments).  When I finished the paper work Gina had X-Ray ready and waiting.  We got our images and went back to stretching with Margaret while we waited for the results.  The paperwork, X-Rays and walking to and from took up about 35-40 minutes of our 50 minutes PT session.  We had about 10 minutes left to stretch and as soon as we were done Gina was back to get us.  We walked over to the clinic area and she pulled up the images.  Dr. Dehne actually sat by his phone and waited for her call.  Casey had a fracture and he wrote for her to get a cast.  Gina showed us the X-Ray and his other clinic nurse joined us with the casting tech to get Casey's foot set.  We were only there maybe an extra 30 minutes after our scheduled time to be there.  If we had gone to the ER, there is no way we would have been out in less than 4 hours.

The next week when we went back for PT Margaret and I joked about Casey having a VIP pass.  She said she was even impressed with how well everything lined up.  The fact that a doctor sat and waited by the phone is unheard of - Dr. Dehne did for Casey though.  I was worried about Casey's foot swelling in the cast.  That evening while we were sitting at home, Gina called.  She was worried about swelling as well and just wanted to make sure Casey was okay.

We see Dr. Dehne and Gina every six months for Casey's CP/ortho issues.  In between appointments if we need equipment, letters, anything at all they are so great about getting back to us often in the same day.  They go above and beyond.  Their office got us started with Margaret almost 4 years ago as well.  Margaret has been AMAZING.  She communicates with all of our DME's and doctors, and she always try to find things Casey will like to try and make PT fun, and she has become like part of the family.  We are really lucky to have such an caring medical team.  I think this story is a great example of the right way to treat patients.  

HERO is spelled Laurie McMillan Hammond and The Lindsay Foundation...

Many months ago we were in search of much needed help paying for Noah's alternative therapies.  Financially we struggle to provide for all of Noah's out of pocket costs that Medicaid will not cover.  Somehow I was led to find a foundation called The Linsday Foundation.  I didn't expect help would be out there, but Laurie McMillan Hammond, the founder of The Lindsay Foundation quickly responded and help was on its way.  We were able to afford Noah's Feldenkrais therapy.  A prayer had been answered.  Several months later another crisis hit our home and we were denied insurance help with a wheelchair for Noah.  I entered a contest to win him one, but in the end Noah didn't win.  The Lindsay Foundation came to our rescue and put together a special fundraiser for Noah and paid the difference to get him a Convaid Cuddlebug wheelchair and a Special Tomato Chair so that he could eat at the table with his family.

Laurie changes lives each and every day.  I don't know what we would have done without help from The Lindsay Foundation.  They lifted us up in one of the most difficult and trying times along this journey.  They were the angels that came to our rescue and allowed Noah to participate in this world and view it so much better in a wheelchair that accommodated his needs.  Through her tremendous loss of her daughter Lindsay, she has given time after time of her heart to help other special needs children.  She is the most giving and loving person.  She connects to families and becomes forever friends in your life.  She remembers each and every child she has ever helped and loves keeping in touch with their journey, progress and accomplishments. 

There will never be enough ways to tell her thank you for all she's done.  But she will forever and always be
Noah's hero. http://www.lindsayfoundation.org/ 
Noah's Miracle: http://www.noahsmiracle.blogspot.com 
Pictures attached of Noah in his Lindsay Foundation shirt and Laurie with a picture of her daughter Lindsay.

This nomination was made by MOM Stacy Warden

Hero is Spelled: Cedars-Sinai Medical Center NICU Team

Our son Austin’s journey here on Earth started on April 11th, at 1:12 in the morning at Mercy Southwest Hospital in Bakersfield, CA. It had been a challenging delivery, so we were all so relieved that Austin was finally here. Our joy quickly turned to concern because Austin was not breathing and his legs were folded up by his ears from being in the breech position for so many weeks. The NICU nurses were in the room when he was born and they cleared his airway to get him to start breathing. They placed him on Momma's chest for a quick moment and then rushed him to the NICU to keep a close eye on him.

Since Austin was not getting better and he needed special care, it was decided that he should be transferred to the Cedars-Sinai NICU in Los Angeles. On April 12th, we watched our son speed off in an ambulance and we went home empty handed to get packed to go be with him. During the first weeks at Cedars, we learned so much about his symptoms and were very hopeful that Austin could get better. Austin had an odd set of symptoms that perplexed so many doctors. He was not able to suck, swallow, or gag, and lacked some of the natural reflexes he should have. He had bad reflux and slow gastric emptying. Physically, he had a recessed chin, contractures (or immobility of his joints) in his shoulders, elbows, hands, hips, and knees. He also did not move much, had low muscle tone in his core, and often had a blank stare. The doctors ran so many tests and each one came back negative.

For a while, he was making small improvements. His joints were gaining range of motion with physical therapy, some of his reflexes were starting to work, and he was swallowing with nerve stimulation from his occupational therapist. With all of the negative test results and these small improvements, the future seemed promising. Sometime around May 15th, Austin developed aspiration pneumonia because he could not protect his airway due to his low muscle tone and swallowing issues. The doctors had warned us this day would come, but Austin was never the same after that. Although he recovered from the pneumonia, he slowly started deteriorating.

We had many difficult discussions with the doctors about how to move on and we knew the outlook was not good. Even though there were no test results to prove it, they were convinced by his symptoms and lack of development that the problem was with his central nervous system in his brain. It was then that we decided to get Austin home and treasure the time we had with him instead of wasting any more time trying to figure out what was wrong. In order to get Austin in a condition to come home, he needed surgery to get a feeding tube in his belly, a nyssen to prevent reflux, and a muscle biopsy that could be tested while we were at home. Austin pulled through his surgery and came home June 20th on Hospice care after spending the first 10 weeks of his life in the hospital.

Austin was finally at home with his family where he belonged. He got to meet his sisters for the first time along with many family and friends that came to see him. Austin got to experience so many things that he never could have in the hospital. He got to go swimming, feel the warm sunlight on his face, touch the grass with his toes, watch and listen to his sisters play around him, watch fireworks on the 4th, and be at Lexi’s 2nd birthday party. He got to feel the warm loving environment of his home instead of the cold bustling hospital. While at home, Austin continued to get worse. He showed more new symptoms along the way that pointed to a negative outcome. Just after his sister’s left to go to Aunt Jenn’s, he started having trouble breathing. He was using his accessory muscles to breath and Hospice said that was not a good sign. Austin was now on constant medication to try to keep him comfortable, but there were still times that he was very restless. Austin’s journey here on Earth ended on July 18th at 6:23 pm when he took his last breath while in his Momma’s arms.

We want to thank the doctors and nurses of Cedars Sinai NICU for the love and care they not only showed our son, but us. We are forever grateful. Dr. Cahan, Dr. Brown, Dr. Le and Dr. Peyton – Thank you for your amazing care. Dr. Le – we are forever grateful for your diligence and honesty with us. If it were not for you, we may not have had the time we did with him at home. Austin's Nurses: Veronika – for being Austin’s night angel and for loving him as if he was yours. Agnus – for being the happiest, most positive person we have ever met. The joy in your heart is amazing. Lisa – for being our rock. Always on team Austin and always fighting for what we wanted for our son. Stefani – for being someone who always helped us breathe easier. For always making us feel like we were doing the right thing for our son – and for supporting us through everything. Lora – for being our angel. You not only loved Austin, but loved us. You took care of us……and did more for us than you will ever know. Your friendship is such a gift. Austin's Occupational Therapist Michele – for being honest and not sugarcoating. Your honesty and support and friendship helped us get Austin to his best and get him home. Austin's Physical Therapist's - Jean, Deb and Tracy, thank you for stretching and loving on our son like you did. To the NICU Social Workers Randi and Cindy - you are amazing and we are forever grateful for you two.

One special example of the bond that Austin had with his caretakers was given to us by his sister Avery. The time 2 of his nurses (Lora and Stefani) came to visit Austin at home, Avery went down for a nap in the middle of the visit. When Avery woke up, the nurses had already left. Avery went to her Momma with her tiny little voice and asked, “Momma where did Austin’s angels go.” This story restores our faith that Austin’s life and passing is truly God at work because no one ever spoke about his nurses in that way in front of Avery.

Austin was never able to speak, but we imagine that if he could, he would have had words of encouragement about his situation and never would have complained about his struggles. He loved his nurses, doctors and the staff at the Cedars-Sinai NICU. And so do we.

Nurses Lora & Stefani with Austin in our home (after we left on hospice care)

OT Michele with Austin

Austin with his 3 sisters

Daddy, Momma & Austin during EEG

Austin after his surgery

Austin when he was born

Geoff & Stephanie Kallenberger - to read more, check out Austin's page.

Hero is spelled: Reverend Julia Messer

Reverend Julia Messer

In December 2011, our daughter, Peyton, started what would begin a string of very long and devastating hospital stays. Before this time her average stay was five to seven days of just trying to figure out why her body would not cooperate. After this time she would rarely be impatient for less than fourteen days, and it was a constant battle just to get her back to baseline, praying we would be bringing the same child home. It was a huge turning point in her disease and her life in general. It was the last time she would be fed, the last stay she would have without daily oxygen, the last stay she would have without a permanent intravenous line, and the last stay that we had where we were able to convince ourselves she could get better. This was that point on the map of life where I can officially say we lost our compass.

Very rarely did we have roommates when we were impatient, thankfully. It can be such an inconvenience to share a room. I would spend most of my time waiting for our roommates to be discharged when we did have one. We had a constant flow of; minor infection kids, minor surgery kids, minor illness kids in general. Not to say these things aren’t difficult for the parents who must go through them, but to us they were a constant reminder that again our daughter wouldn’t suddenly recover, she wouldn’t just be discharged and be ok.

December 2011 changed everything for us. In the middle of the night we got a roommate. I rolled my eyes and wished again that we had a private room. The baby next door cried and cried that her leg hurt. Peyton awoke and asked me to give her, her books and crayons. She is a much more gracious human being than I could ever imagine being. I walked across the room to fulfill Peyton’s wish and looked into the eyes of a precious angel in pain, and her loving family and religious community who were all pulling for her to get better. Instantly my annoyance with having a roommate disappeared and what it was replaced with was admiration and acceptance that though our fights were different we were all fighting for our babies.

The next two weeks were spent with not only their family, but ours being surrounded with love by that same community. It took very little time for us to become acquainted and feel as though we were truly cared for. It was an amazing feeling, one of those true in the right place at the right time situations.

A few weeks after we were both discharged our fast friends had invited us to their Church, the same Church family who had been praying for our daughter for weeks without ever having met her. They had made prayer shawls for the girls, and wanted to present them to us. Honestly I was so humbled. I had never felt so much warmth before.

It was then that we really got to know Reverend Julia Messer. She made it so very clear that she was there for us now and whenever we may need her. We barely knew her, but she already loved our girl and made it very clear that she would be there until the bitter end.
Not a day goes by when I don’t feel her prayerful presence in our life. She has been angry for us, she has been happy for us, she has grieved with us, and most importantly she has been there physically to support and walk us through this journey.

Not only has she been there for me as a friend, but she has been there consistently for our sweet girl to visit her while she is not well. She has been able to undoubtedly always put a smile on her sweet face, and for that I will be forever grateful. She also makes sure that our other little ones feel loved and cared for and always seems to be there right when we need her. She is my true definition of a hero. She has given herself completely without any expectation of reciprocation. She is truly one of God’s people and we are beyond blessed to have her in our life. Thank you Reverend Julia for being our hero, thank you for helping us rediscover our compass.

 Kate Sytsma is mom of four, two of which battle mitochondrial disease.  Kate is a strong advocate for families of children with mitochondrial disease.  She is the owner of Caelum's Cannula Caps, founder of Peyton's Promise of Hope, and Marketing & Publications Coordinator for Mommies of Miracles. 

Hero is spelled: (Cincinnati CHMC) Center for Infants and Children with Special Needs

Dr. David E. Hall and Ava

They are the smallest clinic at Cincinnati Children's and they care for the sickest children.  They are not your typical medical team.  They call randomly at 9 pm to check on your child just because they were thinking of them.  They are selfless.  Dr Levin, who founded the clinic, was a NICU Dr for years.  He was discharging children with multiple health problems that no "run of the mill" pediatrician could treat.  He started his clinic and has a HUGE hand in why so many medically fragile children are home where they belong.  He advocated for home nursing when it just wasn't heard of. Children home with tracheotomy and vent?! Never!  He is a reason so many children are home on vents running away from their nurses, pulling their vent stand with them!

We met this team while my baby was inpatient.  Her pediatrician had tearfully told us Ava was too involved for her.  "I have residents calling me daily to update me on testing I have never heard of" she said.  This was before Ava had a diagnosis of Mitochondrial disease.  In fact, she was on the fourth floor on TPN (total parenteral nutrition) and terrified of everyone who walked in her room.  I had called this clinic and asked if they were accepting new patients a week prior.  Here walks in 3 physicians, 2 advanced practice nurses, a nutritionist, and social workers.  The team to welcome us.  They sat with us, handed us our first medical binder and listened.  They listened.  Sometimes that's what we need. 

Ava and Wendy Choeteau, RN CNP

Ava is now 4 and she tells Dr Hall she loves him.  When she sees Wendy, who she renamed "Popcorn", she lights up.  She is inpatient so much and we've never had a day where they haven't been in her hospital room.  They not only get to know, but work very well with all her specialists.  If they can't answer a question (which is common with Ava) then they will find an answer or someone who can.  They have went above and beyond the expectations of others to provide a directory for families that need any type of help with their special needs child.   http://www.cincinnatichildrens.org/patients/child/special-needs/directory/default/ 

These people are heroes.  They have made having a child with special needs easier.  I know I have a medical support system whenever I need them, any time of day. They love these special children as much as the families love them.  The entire team, although small, means so very much to so many.  To have an entire team  behind you is like a breathe of fresh air.  Ava has never been textbook and we know she is writing her own book. I know this amazing group of people will do whatever they can to make sure her story has a happy ending.

Hope Lawson Carter is mommy of Ava (and other children).  She is active in the fight against mitochondrial disease and advocates for awareness, research, and a cure.

Hero is spelled: Dr. Lenora Fitton, aka "Doc"

The Kottonbrock's and their beloved "Angel" Noah

Our Hero is our Pediatrician Dr. Lenora Fitton. She is unlike any other pediatrician we have ever met. The day she took on our one special needs child she stated "I would be honored to partner with you to help him reach his full potential.". Wow as many of us know that is HUGE in our world? We had been very unsatisfied with our former doctor and was having trouble finding a physician that wouldn't just push our son aside. We were willing to drive however long it took to find Brenton just the right doctor. We asked the disability clinic staff at Cincinnati Children's Medical Center and Hospital (CCMCH) if they had anyone that worked really well with them. To our amazement Dr Lenora Fitton was only fifteen minutes away from our home! Dr. Fitton has continued to support and encourage us along this journey of medically fragile foster care and adoption with the addition of Collin, Addison and Noah to our family.

Doc (as referred to by her patients will make house calls when your child is very ill to keep you from having to drag them out of the house, she answers the phone no matter what time of the night you call, she will do everything within her powers to keep your child home and out of the hospital. She also knows when it is time to go to the hospital. When you are in the hospital she keeps close contact with the family and the treating team of physicians. During times of critical illnes, as was the case with our son Noah,  she called the treating physician and us multiple times daily.


When it became obvious Noah was not going to remain here on this earth with us and the time for him to earn his angel wings drew near, Dr. Fitton rearranged her entire practice, her hospital rounds, her own children and personal schedule to be there. Chas went and picked her up. She came to CCMCH and helped Chas and I transport Noah home and kept him comfortable. Dr. Fitton stayed at our home for several hours that night and then went home. When things took a quick turn she was back within fifteen minutes and was here to call the time of of his death. She is also a deputy coroner for her county in her "spare time" (she has a very busy life).  Dr Fitton (Doc) is truly one in a million. I am not sure what our family would ever do without her. We have informed her she is not ever allowed to retire. We love her very much.

Dr Fitton gave Noah the gift of being home with his family when he earned his wings and that is a debt we can never repay.

Tracy Kottonbrook is mom to fve children all of whom have had or have medically complex diagnoses and two of the five children are heavenly angels.  She is a nurse, and advocate for special needs children in her community, recently winning an honorary award for excellence from her county board of developmental disabilities.