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. 

Hero is spelled: Hocking County Ohio Help Me Grow Program

Catherine (left) and her Help Me Grow Heroes

Most of us can remember a person who came into our lives who made a difference. It might have been a coach, a teacher, or a relative. But how many people can say they've had 6 of those people before they were 3 years old? Well, Catherine can. Through the Help Me Grow Program she has had most of these ladies in her life since she came home from the NICU when she was 4 months old. In the hospital when we found out about her rare chromosomal abnormality, the doctor said she couldn't tell us whether Catherine would walk or talk or how well she would learn.

Then a Help Me Grow representative at Children's Hospital asked me if I would be interested in getting therapy services for Catherine when she went home, and I emphatically said yes. I finally felt like someone could help us. Because honestly, we didn't care what Catherine could or couldn't do or what her future was going to look like, we were just happy she was alive after the roller coaster of the NICU. We wanted to help her be the best that she could, whatever that looked like! 

Catherine began receiving speech therapy, occupational therapy, physical therapy, and early intervention services. These ladies helped us to focus on what she could do and even though it's their job, they were like family, rejoicing with us when Catherine finally rolled over, sat up for the first time, began crawling, began signing "more", making her laugh (and cry!) like I've rarely seen her and more recently when she began eating. They also cried with us when Catherine developed retinoblastoma.

Now that Catherine is 3, the therapy that she receives becomes the responsibility of the schools and she will begin preschool in a few weeks and will leave Help Me Grow. We are so blessed that a few of these ladies will also be providing her therapy at school, but are also very sad that we won't continue to see some of them on a regular basis like we're used to. I have been made to promise that I will keep them updated on the blog and on facebook so they can continue to see Catherine grow and develop, and of course I will.

Thank you so much Michele, Christina, Carrie, Jill, Amy, and Michele. You truly are like family to us. You have no idea how much you've helped Catherine and our family. We promise to stay in touch!

Nicole Hahn is a registered nurse, home schooler, mom to Catherine - who has complex medical needs, and mom to fiver healthy boys, wife, and co-owner of Real Life Rosary.  She is one of our original founding Mommies of Miracles.  To learn more about Catherine's Story visit www.jamesmhahn.blogspot.com

Hero is spelled: Meagan

Logan and his hero, Meagan

Logan's first physical therapist, Meagan will forever have a place in our hearts! She was with him from the time he came home from the hospital in November 2008 until May of 2011! It's hard to let go of someone who cares as much for your child, seeing them succeed & progress as much as you do! I can't even begin to describe the thankfulness that we have for her & the effort that she put into helping our son!! But, because of her we now know what our son is capable of and strive to help push him to learn & grow the best that we can every day!

Tiffany Whalen, is the mommy of two which includes Logan who has Spina Bifida.  She is a champion for parents of children with Spina Bifida and runs the Spina Bifida Support Group called United By Spina Bifida .  She also blogs about her life with Logan at  her blog: Growing from the Obstacles.  In her "spare" time she is an Independent Scentsy Consultant http://tiffywhalen.Scentsy.us, former Mommies of Miracles group administrator, and contributor to Mommies of Miracles programs and services.

Hero is spelled: Cathleen Dickinson

At 36 weeks into my by the book, perfect pregnancy, my husband and I were busy planning the upcoming arrival of a healthy baby.  We didn't know the sex so we had names picked out for a boy or girl.  We had a green and yellow 'Winnie the Pooh' nursery to cover us either way.  Around 34 weeks we took a pregnancy class.  This class talked about what to expect with labor, when to go to the hospital, how to reduce pain and discomfort, etc.  Aside from packing our go bag, we were ready (or so we thought).

After spending the day taking pictures at my husband's triathlon we returned home for the evening.  A few hours later, our lives changed forever.  I was in horrible pain and thought for sure it was labor.  When it did not let up at all, I knew there was something wrong.  Luckily we got to the hospital (4 blocks away) very quickly (as did my OB/GYN).  After a few agonizing moments in Labor & Delivery the nurses realized the baby and I were in danger and I was rushed into the Operating Room for an emergency Cesarian.

The birth of my daughter was very traumatic.  She was a full code (APGAR 0-0-0).  When they were able to resuscitate her she was taken to the Neonatal Intensive Care Unit  (NICU) immediately.  I was taken to the ICU as well.  I was put out for the procedure and woke up hours later, no longer pregnant.  My husband had been going back and forth between the ICU and NICU all night and came in shortly after I woke up.  He told me we had a little girl and that she was upstairs in the NICU.

I was eventually let out of bed and wheeled up to the NICU to meet my daughter for the very first time.  The NICU is a scary place.  When I saw Casey all hooked up to what felt like a million machines I started crying.  She was so beautiful and so fragile.  All I wanted to do was pick her up and run away.  Instead I just stood back and watched.  I didn't know if I could touch her without hurting her.  I had been in love with her since conception and my heart broke into a million pieces as I watched her lay there.

The nurse taking care of Casey was named Cathleen.  She introduced herself to me and then gave me the most amazing gift.  No one knew if Casey would make it through the night, so they let us break a few rules.  Cathleen made it so that I could hold Casey.  Only for a minute.  Casey was on a ventilator, and in order for me to hold her Cathleen had to manually bag her to breath.  I will always treasure that minute. 

Casey was in the NICU with Cathleen for a month before transferring to another NICU.  During that month all of the nurses caring for Casey were wonderful, but Cathleen was special.  She was Casey's primary day nurse and she treated Casey like her own child.  She would cuddle with her when we could not be there.  She would hold her hand and talk to her to calm her down.  She showed Casey so much love and that to us meant the world. When we were moved to a larger NICU we were very sad to leave the nurses, especially Cathleen, that we had come to trust and know.

We eventually made it home with Casey.  We took Casey to visit her original NICU nurses and show them how well she was doing.  While we were there Cathleen offered to come by and watch Casey at our home so that my husband and I could take a break every now and then.  The rest of the time that we lived in Santa Monica, Cathleen would come by every week or two and stay with Casey for a few hours.  She became part of our family.  We knew if we left and Cathleen was there, Casey was safe and loved.

We moved away shortly before Casey turned 2.  Casey turned 6 this year.  Cathleen still checks up on Casey every couple of months.  She remembers her birthday every year.  The experience of being in the NICU was one of the hardest times in my life.  Cathleen helped to make that time a little easier on all of us.  We will never forget all that she did for us by showing our daughter so much love.  Casey doesn't travel well.  We hope that one day she will be strong enough to make it back to Santa Monica to reunite with Cathleen.

Marty Barnes, mother of six year old Casey, Mommies of Miracles admin, founder CLU Campaign

Hero is spelled: Rachel Honeycutt

Paige (right), and Ellie with her hero - Aunt Rachel

Our daughter was born on April 28, 2011, with an extremely rare neuromuscular disease called Congenital Myasthenic Syndrome (CMS).  When she was hospitalized as a newborn for failure to thrive, low muscle tone, and difficulty clearing secretions, the doctors had no idea what was wrong.  After a couple of weeks and many, many tests we were sent home with an NG tube and told to just “hope”.  We spent the following weeks frantically going from specialist to specialist desperate for answers, but no one seemed to have any feeling of urgency for our daughter.  She seemed to make a little bit of progress, though.  She tended to eat better in the mornings than in the evenings. In fact, one morning she even took a full 2 ounce bottle on her own. 

While all of this was going on we continued to see our speech therapist who worked with her on her feeding.  The therapist was especially concerned that she seemed to eat better in the mornings and eat less and less as the day went on.  She felt that was definitely a sign that there was something medical going on that had not been identified.  I was driving home from getting take-out dinner one night and talking to my sister, Rachel, on the phone.  She is a former NICU nurse and at the time she was in school to become a CRNA, so she had been trying to solve this mystery too.  I mentioned the speech therapist's concerns to her - the part about eating better in the mornings.  According to Rachel, a light bulb went off in her head when I said that. She called me back about 30 seconds later and said "Paige, do you ever notice one of Ellie's eyes drooping?"  My heart skipped a beat.  I HAD noticed this before.  In fact, one of the nurses at the hospital had even noticed it.  No one ever acted like it was a big deal, so I just thought she may have a clogged tear duct or something.  I screamed "YES" and she said "Oh my God, I think I know what it is.”  I don’t remember much else from that conversation; I couldn’t even remember the name of the disease.  The only word I could remember was: TREATABLE.  This disease was TREATABLE.  There is a medication that helps the neurotransmitters get the message from the nerve cells to the muscle cells and improves the muscle tone.  In fact, the “gold standard” test for this disease, since it is so hard to diagnose, is to give a trial dose of the medicine and see if the patient’s muscle tone improves.

So that was our turning point.  From then on it wasn't "what?" but "what now?".  We knew we had to get her somewhere highly specialized in neurology because we knew no one around here would have experience with this (it is literally 1 in 1,000,000).  After reading up we learned that the world's leading researcher on CMS, Dr. Andrew Engel, was at the Mayo Clinic in Minnesota.  I called up there, sent them her records, and we got an appointment for August 2.  But that was still weeks away and we did not want to wait that long to get her on the medication (by this point we had ended up back in the hospital a couple times for respiratory issues).  So Rachel went with me to “interview” neurologists until we found one who was willing to listen to us and collaborate with the Mayo Clinic doctors for her care.  He scheduled a test in the hospital to give her a trial of the medication to see how she responded.  That was on July 12, 2011.  We call it her second-birth day because that was the day our baby finally came to life before our eyes.  Rachel was in the room with us and we were all sobbing.  We would later learn that none of the doctors, residents, or ARNP’s who came in to watch the trial believed it would work.  The rest of the day others came in wanting to watch the video and see for themselves.  Since then our daughter has made unbelievable progress.  When she was first discharged (and still undiagnosed) we thought she would probably never walk.  Now at 14 months old she is learning how to walk with the assistance of a walker.  Needless to say if it weren't for Rachel, who knows where we would be. The doctors were all content to leave her undiagnosed, and therefore untreated.  The other children who have this condition often go years before they are diagnosed.  To have a diagnosis this early on when there is no prior family history is unheard of.  Every doctor we encounter always asks us “how in the world did you figure this out”.  You should see the looks on their faces when we tell them “a nurse”!  It was Rachel’s passion, critical thinking, and unwavering devotion (along with a little guidance from God) that got us the answers we so desperately needed.  We are so proud to call my sister, Rachel, Ellie’s Hero.

Paige James is a super MOM of three children, Ellie being her youngest who has Congenital Myasthenic Syndrome.  She is the Program Coordinator of Education and Outreach for Mommies of Miracles and founder of Pumpkin Packs - an entrepreneurial endeavour to provide children with mechanical feeding pumps fun and functional backpacks regardless of ability to pay. 

Hero is spelled: Isaac Pallini

Ella and her hero - her brother, Isaac

While anticipating the birth of our second child, I knew that there would be changes in the dynamics of our little family, but had no idea how many.  Gabriella was born with an extra 21st chromosome, also known as Down syndrome.  When she was born, some of us celebrated, while others mourned.  Our son, Isaac, celebrated the most.  He was nearly three when she was born and until he was 5 ½ he never knew the term Down syndrome.  He just knew that God gave him the sister he had always wanted.  To this day, Isaac is her biggest cheerleader. Although his life has been filled with attending Ella’s therapy appointments and doctor visits, he rarely complains.  He’s the first to stick up for her, the first to recognize her accomplishments and without a doubt, shows the world what unconditional love looks like.  I often look at him and wish that the world would be filled with many more people that have his view on life. Oh what a beautiful world that would be.  Isaac is my hero because he has taught me how to love deeper and celebrate accomplishments, big and small.

Lisa Pallini is one of the original "founding" members of Mommies of Miracles and mom to Isaac and Ella (who has Down Syndrome).  She is a fierce advocate for children with Down Syndrome, and year after year has the largest fundraising team  for the Columbus, Ohio  Buddy Walk.  She is a wife, Christian - who is active in her church, school volunteer, social worker, and avid scrapbooker.

Hero is spelled: Rachel Pettit

Rachel and Ramee

Rachel is my very best friend.  We met online when our husbands were in the Marine Corps together.  We were young wives and we loved the Lord.  Somehow, that drew us together, but now I know without a doubt that God had chosen this friendship for us long before we coulve even breathe air.  Let me explain...

Rachel and her husband were living in Maryland.  After months of trying to conceive their first child, they did!  A baby girl was born 9 months later and Rache was living out her perfect dream.  She had a beautiful new baby, was madly in love with her husband and they had just joined a new church.  One random day, after one thing led to another, Rachel found out that her husband had been having an ongoing affair with a co-worker.  Their baby was 5 months old.  After pleading, begging and everything in between, Rachel's husband packed a bag and left her and their new baby.  Immediately my husband and I asked her to fly to us in Illinois so that we could see her through the most devestating time of her life.

Before we knew it, Rachel and her baby girl were living in our new baby's bedroom.  2 months later, our family was thrust into a journey of unknowns when our 3rd baby (a little girl named Mabel) started showing signs of delays along with seizures, hearing and vision loss and a downward spiral of other complex conditions.  Looking back, it felt like quickly our ability to care for Rache and her new baby was overshadowed by a horrific reality that something was seriously wrong with our baby.  During this time, my best friend rose up from within herself and surrounded me with strength, courage and dedication to our family. 

There was never a time that I had to worry about who would keep my other children while I was at a stressful appointment.  There was never a therapy visit that she didn't sit at my side for the inevitable disappointment and hurt.  There was never a night that went by that she didn't curl up beside me with the laptop and indulge in hours of research and tears.  There was never a time when she didn't love my baby with all that was within her.  As I dove into a time of grief and despair, I saw her slowly coming out of hers.  It was a cycle that lasted well over a year but where I was lacking, she was strong and vice versa.  I believe God had a plan long ago and although I don't believe He caused any of this hurt or any of the unknowns-I do believe He used it for the good by bringing us together.  My husband worked nights and I was never alone...and neither was she.  We had each other-our very own 'God with skin on' to see one another through the most terrible year of our lives.  When she felt angry and betrayed, so did I in much different ways.  When she felt sad and hopeless, so did I.  When she felt tired and weary I rose up and when I felt like dying from sadness, she promised not to let me lose myself in the hurt.

I can never explain the intricate, delicate balance that went on in this house or in our hearts during this time together but what I can tell you is that this friend of mine is a gift.  Everyone in the world deserves the kind of love that she has shown me, and my entire family.  She often says she couldn't repay us for seeing her through that dark time in her life, but in reality it is I who could never have survived without her gentle eyes, knowing smile and uncontrollable laughter. 

Rache and Mabel

Our daughter, Mabel, is still undiagnosed.  She will be 2 years old next month.  Rachel still lives in our small town.  She helped organize our first 5k race last year and will be by my side as we hold our 2nd annual race in August.  She has attended important appointments, held me as I have cried for hours, learned how to navigate a g-tube, seen the worst of the worst and loved me anyway.  She knows how to spot a seizure from a mile away and now even works with special needs children daily.  She overcame the worst, most painful situation and did so with such grace.  She is a wonderful single mom who loves Jesus and loves people well.  She is the hero of my heart and I know God made her perfectly-if only for me. 

I love you, Rache.  More than you will ever know.  This friendship is the best gift I have ever been given and I love doing life with you every day.  You are the beat of my heart, love.  No matter what life throws our way, I feel brave knowing I get to handle it with you.  You are an unsung hero and today I'm singing your praises!

Submitted by Ramee Larson, mom of three including Mabel.  She is the founder of Mabel's Able a support organization for families of children with rare or undiagnosed conditions.  To learn more you can visit: www.rameelinlarson.com

 

Hero is spelled: Judy Smalley

Judy Smalley, Physical Therapist and Owen Birk, age 7M

After a textbook pregnancy and uneventful birth story, we thought our son was born perfect, ten fingers and ten toes, that is all that mattered right?  Shortly after his birth we began our "special needs journey" filled with terror and heartache as his diagnosis slowly started to emerge with each absent milestone, each agonizing delay, each bottle he couldn't swallow, each lacking smile, and the constant irritable scream that still resonates within my soul to this day (five years later). 

During these very early months we were given the opportunity by the county that we lived in to obtain a free home health evaluation by a registered nurse.  This was a standard service for all new mother's regardless of economic status, so we gratefully welcomed the nurse into our home knowing all too well that our son was not following any "typical" developmental pattern - the nurse sadly agreed.  Our son's diagnosis story is a long one, but during the seven months we were working toward discovering that he had a rare brain malformation called polymicrogyria and a genetic mitochondrial disorder, we we fortunate enough to receive in home early invention services with included a variety of therapies, one of which was physical therapy which is where the very first hero of many walked right into our front door.

Hero is spelled: Judy Smalley because she was one of the very first of MANY people who would be involved in Owen's life not only as a therapist but as a cheerleader, and in my life as a friend and confidante.  Judy has the heart of a mother which she intertwines with her deep rooted Christian beliefs and a holistic therapy approach that includes body + mind + spirit = good health.  The early days of my sons life are blurry - at best - where the days and nights were one in the same.  There were non-stop tears from all parties in our family.  The heartache was indescribable.  The one constant positive force in our lives during that time was Judy.  I looked forward to her knock on our door, because she brought smiles and conversation into a place of isolation and grief.  My time with Judy was as therapeutic as the time she spent with Owen, and I am so very blessed to call her a friend even to this day.  When Judy would enter our home it was the one time each week where Owen would stop crying, focus his attention on Judy, and enjoy the gentle and healing touch she provided to his fragile body.  After she would leave our home, Owen would sleep without issue and experience several hours of lingering "peace" - this was nothing short of a miracle for a child with a high pitched and constant neurological cry that would sting the ears of anyone who heard it.  It was as if Judy had a way of telling him "everything is going to be okay" and she could magically wipe away his pain with just her touch.  She also had a way of wiping away my pain by sharing the stories of her experiences with other developmentally delayed children over the years, and how on many occasions she had witnessed them achieving far beyond anything ever predicted.  Judy not only brought healing and peace into Owen's life, she brought it into mine.  She was able to assure both Owen and I that we were going to be okay no matter what was headed our way, and I am happy to report she was right. 

When Owen turned three years old he was transitioned out of early intervention services, and out of the Judy's care.  It was a truly sad time to leave her, and the entire "EI" staff behind but she will always be that ONE bright spot in the early months of agonizing grief and worry, and the one person who gave us hope when there was no hope available. 

Judy Smalley, you are our hero of hope and always will be.

Anita Birk, mother of five year old Owen, is Founder and Executive Director of Mommies of Miracles.