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Seriously? The Children's Miracle Network
If I told you I was excited today, that would be a gross underestimate.
Neely and I have been invited into the studio with The Children’s Miracle Network and Greenville Children’s Hospital to record our story for their annual Radiothon this fall. If you are located in the Carolinas, you can tune into New Rock 93.3, B93.7, Magic 98.9, Rock 101, or WORD 106.3 on September 15-17 to listen.
During the Radiothon you can hear the recordings of families sharing their experience with the Children’s Hospital and their fight for recovery. On-air personalities are interview families members live and encourage listeners to support their local miracle-makers like the Greenville Children’s Hospital. (In 2009 they raised more than $260,000 to help those patients!)
It means so much to us to be able to use our story to give back to the Children’s Hospital and Doctor’s like Augusto Morales, MD who never hesitate to go the extra mile for their patients. And it’s also relief to think that other parents might be able to change their own story for the better, because of learning from ours. (Plus – Who wouldn’t love to hear Neely’s sweet little voice broadcast on the radio? – Maybe I’m a little biased.)
I’ll be sure to tell you about our experience – posting plenty of pictures of Neely in studio.
Wish us luck!
It's all about the connections
Shortly after lunch I received an email from a Mom who had gone to Neely’s Miracle looking for help and contacted me. A friend of a friend of a friend (that’s exactly how it should work) had told her about NeelysMiracle.com and encouraged her to check it out. This Mom had just learned that her 2 year old little girl has ADEM (Acute Disseminating Encephalomyelitis)
Less than 24 hours passed before she learned about the website. As it turns out, they are being treated at Greenville Children’s Hospital and I was able to go and visit in person yesterday afternoon. While I am dreadfully sorry that her sweet little girl has ADEM – I am relieved that we were able to connect and hope that I can be a source of support for her. (I haven’t yet asked her Mom if it is ok to tell her story – so I can’t give you to many details. ) When I was in her shoes, I would have loved to have another mom to talk to.
Because I don’t want you to worry (and I know you will), I’ll tell you that the little girl is doing very well. While I was visiting she was playing and talking – She really looked great. Her Mom and Dad have lots of hope and a great support system. I was so happy to see that they were doing so well.
Just like us, getting to the prognosis was difficult. There were told many times that “it was just a virus” and were sent back home to wait it out. Thank goodness this family didn’t accept that answer.
When the Levees Break
Our family is fortunate to have a strong support network among our friends and family. We didn’t have to look far when we were in need. My sister, Carrie B. Potter, has spent her career helping children to cope through traumatic experiences. I was thrilled when she offered to create this series of posts (Health through Crisis) to help families who are struggling. Check back often to see new posts in this series.
In situations like these, when a family member becomes suddenly ill or hospitalized, the family unit enters crisis mode. We define a crisis as some dramatic emotional or circumstantial disturbance in a person’s life. Sudden illness, an accident, death, a broken relationship, and natural disasters are all examples of events that throw us into crisis. No doubt about that. How can a family pull together and become stronger when they are in crisis? (more…)
Have you signed up for our Newsletter
Keeping you “in the know” in a way that is upbeat and encouraging. Never more than one newsletter per month and always free. This is what you can expect from Neely’s News.
Each issue will include:
1. An Update on Neely’s progress and continued recovery.
2. Patients Like Us – An article that features a patient or family with an incredible story to share.
3. Doctors We Like – Tips on finding the right doctor for you and resources that help you do it.
What are you waiting for? Sign up for Neely’s News.
She doesn’t know she changed my life–Now she will
I’m not a writer. I’ve never thought of myself as one. But I do love to write. And I can remember the exact moment in time that forever changed the way I think when I put pen to paper.
I was in second grade, and it was Valentines Day. (Imagine dreamy music and a wiggly-blurry screen as I take you back there.) It was the coolest year ever – for a lot of reasons. (more…)
Introducing Sydnee...Another Happy Ending
No long ago I mentioned finding another Mom like me. That Mom’s name is Melanie Barrett. She reached out to me through NeelysMiracle.com and we became instant friends.
Not long after we met I asked Melanie if she would be willing to share her story through this site. She agreed and started (what I know is) the very difficult process of writing it down for the first time. This is not an easy story to read. It is a story of pain and frustration beyond comprehension. But is also has a very happy ending. If you have trouble reading this post, remind yourself how difficult it was for Melanie to actually live through it. Every Mom deserves a chance to tell their story – And every Mom deserves to be celebrated for having the courage to be aggressive advocate for their child.
This is Sydnee’s Story – Told in her Mothers own words. (more…)
Child Life Specialists are the Unsung Heroes
I never knew they existed, but now that I do, I tell everyone about them.
Child Life Specialists are pediatric specialists (not doctors) working with families who are hospitalized. Their focus is to help families manage stress that comes along with medical trauma, understand medical procedures, and aid in the mental well being of pediatric patients. You can learn more by visiting the Child Life Council.org
While we were at Greenville Childrens Hospital for Neely’s ADEM Recovery, the Child Life Specialists came to visit us every day. Sometimes several times each day. (more…)
Meet Neely's Mom
Everything I’ve done in life has prepared me to tell our story. It just took me a while to figure that out ~
I’ve always been a typical Type A personality. High Standards attached to even higher expectations. The middle child of a farmer that grew up to attend a classic southern university, marry her high school sweetheart, and have 2 charming children. It all seems pretty storybook if your on the outside looking in. (more…)
Starbucks was at the Hospital with us
You read that right. I said Starbucks. We have never been huge Starbucks fans, always preferring to support our local Batista’s, but during our stay at Greenville Children’s Hospital we learned to appreciate “the coffee that brings people together.” (or so they say on their web-site.) There is a Starbucks located inside the hospital – about a 2 minute walk from any of the Children’s Hospital Elevators.
Those 19 days in the hospital were stressful (just stating the obvious here – it makes me feel better) to say the least and neither Jamie or I could find the appetite to eat much. So that cup o joe became even more important. Some days, my Nonfat Venti Caramel latte, made up my entire days nutrition. Not the smartest choice…but you do what you can.
During the 5-10 minutes it took to drink that coffee every day (ok – sometimes twice a day) I would think through everything that that had happened since my last cup. That Venti cup from Starbucks became my Calgon! It gave me an opportunity to mentally re-group, assess our progress, and be sure of our next steps. Thank you Starbucks – for helping us through the rough times.
A Girl with Priorities and a Strong Will
Funny, Determined, Curious, Loving…all words that I would use to describe Neely.
She keeps us laughing. A few weeks ago, I found Neely in my bathroom surrounded by my make-up. She had rosy cheeks, red lips, and a rainbow of colors around her eyes. When she saw me walk in the bathroom, she looked at me with the most sincere face you have ever seen, Held out her hands in serrender and said, “I’m just a clown, mom. I’m just a clown.” (more…)
Getting Children to take Medicine
As parent, getting your children to take medicine can be really difficult. While we were at Greenville Children’s Hospital, Neely, became so fearful of what was going to happen when a doctor or nurse walked in the room that getting her to willingly participate in any exam or take any meds was almost impossible. (Dr. Morales, of course, was the exception to this rule. Neely loved him from the beginning and has never once been afraid. She says, “Dr. Morales is the doctor that doesn’t hurt me, mom.”)
She would cover her face with her arm (more…)
Who are your Doctor Heroes?
We have heroes! And I bet you do too.
Since sharing Neely’s story and our negative experience with Christie Pediatric Group (in Greenville, SC), I get all sorts of questions about the doctors that we are using now, who and how we choose a physician, and what is important to us when we’re looking.
And while we all realize that Doctors are only human, there are a rare few that truly go above and beyond to connect with and help their patients. (not unlike any profession really, some people come to the battlefield ready to fight while others coming hoping to hide behind the bushes!)
Our Heroes are the Doctors and Nurses that cared (really cared), listened, took action, and treated us like we were their family. (Because we consider them part of ours.) Tell us about your heroes – If you know of a doctor or nurse that is perfectly described as a Hero, tell us who they are. This audience would value your doctor recommendations. You never know when we might need them.
Meet Neely's Dad
Jamie is the strong silent type. (And he is going to hate being the focus of this blog post.) He is an amazing husband and father. And if you are fortunate enough to be called his friend then you know there is no one more loyal, supportive, or funny than Jamie.
We were High-School sweethearts, went on our first date in 1990, were married on February 28, 1998, and still haven’t stopped laughing. Neely has his sense of humor (and his height!) She always say, “Don’t worry, Daddy can fix anything” and she’s right. It’s a good thing too because Neely can break anything. When Jamie grabs his tools to go to work – Neely is not far behind with her Handy Manny tool set. Date Night for them means finding the closest burger and then checking out the latest gadgets at Lowes.
Jamie can quote lines from every movie he’s ever seen, knows every song, artist, band and album title not categorized as “classical” and is a trivia King! Don’t even try to out-answer him. Ava has his love of music and ability to remember the details. He is already talking about where to take her to her first concert. (He refuses for “The Wiggles” to count.) When Ava was born, Jamie could almost hold her in the palm of his hand and now she holds him in hers.
Daddy’s little girls. They love to play dress-up. They are the princesses and he is always Prince Charming. Once Ava told me that when she grows up she is “going to marry Daddy”, but that she would still let me live with them. (Thanks, Ava!)
Jamie is a master of his grill, zero-turn John Deer, Ford Truck, and iTunes Account. So when a friend sent me a link to this video, I couldn’t help but laugh and include it here. It’s Jamie. He’s ours and we love him!
Meet Neely's Sister, Ava
This is Ava. Jamie and I call her our “miniature 30 year old.” She is only 6, but I think she must have a really old soul.
She is the most caring, compassionate, and intuitive person that I’ve ever known, and I learn something from her everyday. It amazes me that at such a young age, she can be so in touch with what other people are feeling and the impact of her actions on those feelings. (more…)
3 Easy Steps to Manage Your Hospital Stay
Fortunately, During our Greenville Children’s Hospital stay last year we were flooded with concerned friends and family that were concerend about Neely and offered to do any and everything to help us. From candy to meals, and research to hospital connections, anytime we were need, there was someone there to help. We couldn’t have made it without them.
The difficult part is showing everyone how much you apprecaite their support and keeping everyone updated on progress while you are so focused on the next procedure, medecine, therapy, or medical challenge that lies ahead.
This may not be the best way – This is the path we chose in 3 easy steps. (more…)
Another Parent like me
Thanks to The Transverse Myelitis Association, I was given the opportunity to reach out to a family that is recovering from ADEM. (I haven’t yet asked her parents permission to share her story – so I won’t share any personal details here until I do.)
Suffice it to say that she is a 3 year old little girl (with features that are strikingly familiar to Neely – that was a shock.) She developed ADEM in May this year (Neely’s ADEM came May last year) and is doing really well in her recovery. (more…)
Traits of a Good Pediatritian
Below is a list of what some of you have shared with me….but I’d love to hear more. What do you look for in your pediatrician/doctor? (more…)
Riding My Bike
It started on the 5th floor of the Greenvile Childrens Hospital and hasn’t stopped.
Neely absolutely loves riding her bike. She had so much fun playing outside over the July 4th Holiday. She and her sister, Ava, ride for hours and never seem to tire of it. It is really hard to believe that just a year ago (more…)
One Doctor from Christie Pediatric seemed Sincere
I would be remiss if I didn’t mention one Doctor from Christie Pediatric Group that showed us sincerity. Ironically, in our 6 years of being patients at Christie Pediatric Group, he was the doctor that we had seen the least of. (There are 9 physicians currently in the group. 5 of the 9 doctors were involved in Neely’s case in some way. Some just over the phone)
James B Nichols, Jr (more…)
Christie Pediatric Group Never Apologized
So many of you have asked me about Christie Pediatric Group’s (our former pediatrician) response since Neely’s illness that I thought I should share my answer via this blog.
They never apologized. (more…)
Finding a Mom like me
Telling Neely’s story and sharing our experiences with Greenville, SC doctors has been the best thing (aside from her recovery, of course!) that has come from our year of ADEM recovery…Because it has opened the door for us to connect with other families like us.
If you only know me from reading this blog – then you might be surprised to learn that I am a very private person. We’re a private family. Sharing our innermost thoughts and concerns is typically something that only happens in the security of our own home. It was pretty difficult to hit the “publish” button the first time.
So imagine my excitement when after only 2 weeks of the site being live, I received and email from a mom just like me. Her name is Melanie, and the email started like this:
“Hi…. A friend of mine just sent me a link to your blog. I read all of it… most of the time with tears pouring down my face. We share a very similar experience… mine happened at the end of January 2010.”
I couldn’t read the email fast enough. Just like me, Melanie had felt…. frustration from doctors that wouldn’t listen, helplessness from symptoms that couldn’t be explained, despair from literally feeling your child die right in front of you, fear of next steps and the sweet sweet relief of improvement and progress.
We met for coffee and were instant friends. It was an odd feeling. We’d known each other for less than 2 weeks and yet I felt as though we were old friends. That conversation was the validation I needed to continue sharing our story. Hitting the “publish” button just keeps getting easier.
There are lots of Moms (and Dads) like us. And I am convinced that if we just keep talking we can make it a little easier for other parents who may be just starting the journey that we are already adjusted too. It won’t be long before you start to see other parents stories posted here as well. Stories like Melanie’s and many others.
Be your own best health care advocate. Know and choose your doctor carefully.
What is a Neuroimmunologic Disorder?
It’s hard to say, hard to spell, and hard to deal with, but over the last year this is how I learned to understand it.
It includes things like ADEM, Meningitis, Encephalitis, and hundreds of other conditions. Pardon the analogy, but this is one of the best descriptions that I have found for helping parents (or patients) understand Neuroimmunologic Disorders. Here we go… (more…)
What is ADEM, Acute Disseminating Encephalomyelitis?
Many of you have asked exactly what is ADEM or Acute Disseminating Encephalomyelitis? So here goes…
Often referred to as ADEM, Acute Disseminating Encephalomyelitis essentially means you have inflammation in the brain that is attacking and destroying tissue. (Imagine a litter of kittens playing with a basket of yarn. The kittens are the inflammation and the Yarn is the brain.)
ADEM is a Neuroimmunologic Disorder. It is a rare condition that occurs in approximately… (more…)
Choosing Your Pediatrician
This is worth repeating…
Finding a physician that you feel comfortable with, is conveniently located to you, and has the hours of operation that you need only get you to the starting line. “Well Visits” and “Check-ups” are easy. Here are a few things to consider whether you are looking for a new physician or evaluating the one you have. (You should always be evaluating the one you have.)
- Know Your Doctors philosophy on referring to specialists
- Ask if your doctors office conducts patient satisfaction surveys or evaluations
- Ask about hot-lines for patients or parents of patients that want more information (more…)
Finding a Doctor, Again
Obviously, after living through this experience with Neely, our approach to finding, investigating, evaluating, and choosing a physician of any kind has taken on a whole new meaning.
This last month, we were able to put our new method to the test. My oldest daughter (and Neely’s big sister) needed to have a consult with an ENT (Ears, Nose, Throat Specialist). Our pediatrician (who we also went to great lengths to find and evaluate) recommended we see Dr. Michael Greene, MD of Provident ENT.
These are the steps I followed before and after our appointment to evaluate Dr. Greene as a doctor and to be able to make an informed decision about whether or not we would allow him to operate on our little girl. (more…)
How a Parent Copes?
It started immeadiately…but then didn’t go away easily. While we were in the hospital, I really didn’t get much sleep. A couple of hours a night at best, and maybe a little dozing in the chair now and then. It just becomes part of the routine, so when you get home and still don’t sleep, it doesn’t feel abnormal.
The problem was that every time I closed my eyes, I saw a slide show from that infamous night in the hospital when Neely’s life was hanging by a thread. (more…)
You can Create Miracles with Just One Extra Click
By going to www.shoppingformiracles.org, a percentage of your purchase from participating retailers will benefit Children’s Miracle Network and GHS Children’s Hospital.
All you have to do is enter your zip code and then click on the link to the retailer’s website and shop normally. Retailers include Walmart, Amazon, Macy’s, Kohl’s, Old Navy, and Overstock—just to name a few. Anywhere from .5% to 6% will be donated.
Just a Mom Wanting to be Heard
It’s why I built this site…
Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site.
Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with doctors (primarily pediatricians), and health care bureaucracy. While there are wonderful hospitals (like Greenville Children’s Hospital) and amazing doctors (like Dr. Augusto Morales) that are truly focused on patient needs and healing; there are still far to many opportunities for patients to fall through the cracks. (Read about our journey)
(more…)
Great Visit with Dr.Morales this Week
We had a great visit with Dr. Morales this week. Neely’s continues to do well and is tolerating her meds as well as we could expect. Keppra (anti-seizure) can cause irritability and insomnia – so we are always battling bedtime and tantrums. As she grows, it becomes necessary to increase her dosage accordingly, and this week we increased her dose by .5ml per day. (She takes a total of 6ml each day) It doesn’t sound like much, but can make a big difference in behavior. (more…)
Actual Journal Entries from Neely's Mom
On May 15, 2009, my 2 year old daughter Neely caught a virus that triggered an immune disorder. In less than 12 days she went from a healthy toddler to a heart beat and a shollow breath. Our pediatrician at the time did not meet our expectations for care. I don’t think they were listening to me, they did not refer us to a specialist, and they kept sending us back home insisting that it was just a virus would work itself out. I believe they were wrong and it almost cost us our daughters life.
We have often shared her story, but never shared the details of those first days. I decided to publish these excerpts from my personal journal so that other parents might benefit from the lessons we learned. Knowledge is Power! Make sure you know your doctor and know what to look for when you are choosing a pediatrician. If you are a parent, you NEED to read this. (more…)
Know what to look for when you are choosing a pediatrician.
This year felt like 10 years. As the one year anniversary approaches, I have found myself constantly torn between relief and dread. Logically, I realize that Neely has surpassed every expectation this year. She performs at or above age level in every category for which they provide testing. What parent wouldn’t be thrilled with that news?
Emotionally, I can barely manage the panic and fear that sneaks into my thoughts when I least expect them. It’s true what they say – That ignorance is bliss. One year later, we have all come so far. It is really hard to comprehend where we were just a year ago. It’s changed us in more ways than I can count. (more…)
It Shook us to the Core
It really is true that we all go through life thinking that “It” only happens to other people. But when “It” happens to you and your family – you are forced to look at life from a different perspective. Make sure you know your doctor and know what to look for when you are choosing a pediatrician.
On May 15 this year my 2 year old daughter, Neely, caught a virus. There wasn’t anything special about the virus – just your typical 24 hour stomach bug. In trying to fight it off, Neely’s immune system became confused and began attacking her brain and spinal chord. It is a rare condition called Acute Disseminating Encephalomyelitis (ADEM) and only occurs in 1 out of every 1.2 million children (approx). It took less than 12 days for Neely to go from a healthy happy Toddler to a heart beat and a shallow breath. That was all she could do. (more…)
Results from this weeks EEG
Over the last 2 weeks Neely has been having 10 to 15 “episodes” per day. The episodes mimic the signs of a seizure and caused enough concern for her Neuro-team to schedule a long-term EEG. (4-6 hours in length)
Neely did great during the test. She gets really nervous now before and during tests…who wouldn’t? Luckily (even though that sounds weird), Neely had 4 of these episodes during the EEG so we will be able to evaluate her results with confidence knowing that we could isolate those episodes and see exactly what is happening during those times.
Her Doctor is confident that the episodes she has been experiencing are not seizures. This is great news! Neely still has slower brain activity coming from the areas where she has scar tissue on the brain (a direct result of ADEM) At this point, we have to assume that those episodes are a side effect of her medicine. We hope that as she continues to adjust to those meds….the side effects will subside.
We are grateful for the good news!
I just talked to Dr. Morales about the results of Neely’s EEG last Tuesday. He said the “episodes” that we have been seeing are NOT seizures. Great news! He said she still has a tendency for seizure (slower brain waves from the scar tissue area) but that those “episodes” are likely a side effect from the increased dose of meds. We are just going to continue to watch her to see that the side effects subside as she adjusts.
Home and Feeling Better
Neely’s MRI and EEG confirmed that the seizure activity she experienced this week-end was in fact a result of her ADEM. (This is the best news we could have received given the circumstances)
It appears that there is no permanent damage form the Seizure activity this week-end. She has bounced back and is already busy playing with Ava. What a relief!
We are going to spend the next few days resting and counting our blessings.
A Day of Tests…and now we wait
Yesterday, Neely was monitored for additional Seizure activity as they increased her doses. Her activity level came back and she was responding normally.
Today we were scheduled for and MRI and EEG. Neely’s Neurological team isn’t sure why she had the seizure. There are several theories. Without a doubt, this is a complication of ADEM. It is possible that her existing inflammation (which has been slowly improving) took a turn for the worse. This could also be a recurrence of ADEM (meaning we would be headed down the same path we went in May) or this could be the first presentation of Epilepsy, which ADEM patients can develop as a result of the condition.
We are in hopes that the MRI and EEG will give us a clear indication of the cause and help us to determine the appropriate next steps.
Neely is exhausted from the day, but is in good spirits and has a healthy appetite. All good signs…
Back the the Emergency Room with Neely
On Saturday, We were out for a typical day of shopping and errands in Greenville. Neely had been laughing and playing with Ava as normal. We were in the store looking around when all of sudden she wouldn’t respond to a question that I asked. One quick look at her face and I new we were in trouble.
Neely’s eyes were dilated and jerking, her face was expressionless and her shoulders and she lost movement of her arms and torso. She only muttered a few words….”its dark” (her vision was gone) and “hold me.” Jamie and I ran for the car as I dialed 911 and they instructed us to go to St. Frances Hospital (Pelham Rd) emergency room so that they could stop the seizing.
We were there for about 90 minutes, had a CT scan and blood work and were then transported to GVL Children’s Hospital where Neely’s team of physicians were waiting for us. Throughout the night the seizure activity subsided but Neely was very weak and tired.
Back to School
For the first time ever…..I couldn’t be happier to see this summer quickly slide into nothing more than a vague memory.
So we have embraced back to school with open arms! Ava started Kindergarten this year at Abner Creek Elementary. Her teachers, Mrs. Mehaffey and Mrs. Fowler, have quickly become regular topics at our dinner table. Jamie and I dropped her off on the first day and watched as she marched straight through the front door of the school – She never looked back.
Oh how I wish I had the even an ounce of the courage that she does. Her class goes to lunch at 10:40 each day….Crazy Early! Jamie went to school (without Ava knowing of course) to peek into the cafeteria and see how she was doing. He said that Ava was entertaining a table ful of little girls….lots of laughter and that she was all smiles.
I suppose one day we will tell her how worried and proud we were for her on that day.
Neely wasn’t able to start school this fall. She was signed up to attend 2K at Mauldin United Methodist but her Doctors were not comfortable releasing her for school just yet. The risk of her getting sick again while she is still healing is to great to chance. Instead, Neely gets lots of one on one time with Jamie and I and Kate (our Nanny)
A few of Neely’s favorite things this fall are regular trips to “the circle store” (aka Target) and wearing her new blue jeans. Too cute!
This picture was taken while she waited for Ava to get out of dance class.
New MRI results are in….
Neely went for her first “out-of-the-hospital-MRI” on Friday morning. Her Doctor (Greenville, SC) has warned us to keep our expectations in check – while we would all love to see a “clean MRI” – that was not going to be a reality. Recovery from ADEM or Acute Disseminating Encephalomyelitis is very slow.
The IV was without a doubt the hardest part for Neely! It took about 10 seconds to get the IV in her foot, taped down, and wrapped up in bright orange wrap. Neely took one look at the finished product and started to cry. Worried that she was in pain, we asked her what was wrong and if she was ok…..Her reply was simply, “It doesn’t match, mommy!” She wanted the pink wrap (which would have matched her pink and green outfit) The nurses were kind enough to comply.
Our prayers were for the the MRI to show significant improvement – and prayers were answered! Neely showed an 80-90% improvement over the last test. There is still some swelling and inflammation present – But the tests indicate that she is still healing, and we should continue to see improvement.
We are all working hard with Neely in therapy, the entire family gets in on the action. She is currently seeing 2 speech therapists and has Physical Therapy on both water and land. There are 3 doctors and 5 therapists that currently oversee Neely’s progress and treatment plan. Trying to master her schedule is a full time job – unfortunately, it doesn’t pay much. 
Our treatment team has decided that it would be best for Neely to skip pre-school this year. The chance of her having a recurrence would be increased in an environment where children (and germs) are rampant. And that is a chance that we are not willing to take.
We will just keep putting one foot in front of the other….
Sun, Sand, and Swimmies
We decided to take a much needed break to celebrate our ADEM Recovery. and head for the beach over a long week-end. We had a blast and wished we could have stayed longer. We spent 2 full days out on the sand and built enough sand castles to create an entire neighborhood of sand-princesses.
Neely insisted that she wear her ball cap “like a man” – Ava was mortified by the thought. They had so much fun playing, but definitely preferred the sand to the water.
After 18 Days..
After 18 ridiculously long hospital days for ADEM (Acute Disseminating Encephalomyelitis) recovery, the Thompson family is back together under one roof. Neely came home yesterday afternoon!
I was with Christy at the hospital when she got the news and I honestly saw her shoulders relax with the deep exhale she enjoyed. Christy and Jamie have been so ready to have the whole family back home again. Ava said it best when she hugged her mom and said, “You are coming home? Oh GOOD! Now I can sleep in the same bed with you!”
It is still a long road of recovery ahead but we are grateful for Neely’s current health. Her doctors foresee that she will continue with her therapy treatments for the next few months as the swelling in the interior of her brain continues to diminish. They also warn that although Neely looks completely healthy on the outside, her body is still healing and repairing on the inside. She is scheduled for a follow up MRI in two weeks.
She will continue to take anti-seizure meds, steriod treatments, and immuno-suppressants until the doctors feel they are no longer necessary. Christy and Jamie have been instructed to keep her away from crowds and public places for the next three months to stave off infection and sickness since her immune system has been weakened.
We are so grateful for the amazing care and treatment the medical professionals at Hotel GHS have given to Neely and her family. I have said it before, but it needs to be said again, Neely’s recovery has been nothing short of a miracle, and there is only one we can truly credit for that!
The Neely Weekend Update
Jon and I went to visit Neely at Roger C Peace (Greenville, SC therapy) on our way to our anniversary dinner last night. Before getting to her room, we heard giggles from the playroom on the floor. We peeked in to find my Mom and Dad playing with Ava and Neely. One was riding a tricycle, one was making a snack in the play kitchen, one was shooting the basketball, and one was reading the rules to a game. You guess who was doing what.
I happened to have my camera with me this time so I took the opportunity to take a few better quality pictures than what we could get from our cell phones. These few photos below show Neely’s amazing progress over the weekend. We noticed that she still experiences tremors when she plays too long or gets tired but she is still making great progress. After the giggles and squeals that we heard in the hospital tonight, we are hopeful that she could be home very soon.
The Neely Update for Thursday
Before I share the good news from yesterday, I want to share a little Neely story. On Tuesday, I went for a short visit to see our girl at GHS Childrens Hospital. While I was there, Christy, Jamie, Neely and I decided to take a walk downstairs to look at the fish aquarium on the 5th floor. The rocks on the bottom of the tank are white. There was one, only one, black rock. Neely looked at it for a minute, then pointed and said, “Dat’s poop.” Then she looked at her mom and said, “Who frew dat in dere?” We all got a belly laugh from that one, except Neely, who was still very perplexed by this situation.
So, the good news is that Neely is taking control! Yesterday was such a big day for her. Her IV is gone. She met with three therapists yesterday. They took her to the the play room where she began walking with assistance. By the end of the day, she could walk unassisted but she is very unsteady and loses balance a good bit. Through the therapy session she rode a tricycle several laps around the room (with assistance).
Christy, Jamie, and Neely met with Dr. Toma from Roger C Peace to discuss Neely’s inpatient therapy. They should be moving there today! Our girl is on her way. She has amazed everyone (especially her physicians) with her strength and ADEM recovery. She is nothing short of a miracle in every way.
This picture shows a very sleepy little girl after her first day of play
The Neely Update for Wednesday
The results from her MRI are in. Hopefully I can explain this well. The MRI shows that the inflammation on the outside of her brain has gone down significantly, if not completely. However, the inner ‘gray matter’ part of her brain still shows inflammation and lesions. So if I understand this correctly it means that her brain is aware of and receiving stimulus but is unable to process sometimes and so she gets confused.
Her speech is much better. She has been sitting up in the bed and playing a good bit. She has so many medical professionals coming in to see her everyday. She has 3 therapists, child life specialists, a team of pediatricians and neurologists, and about 8 nurses that tend to her. Visitors are still limited because of all that and also because she is way overstimulated at times by noise, movement, color, etc.
We are still taking it day by day and unsure of when she will be able to come home. The doctors do expect that when she does leave the regular hospital, she will move to the Roger C Peace Rehabilitation Center for inpatient care before she can go home.
Neely looks so much better. Christy sent these pictures of her waiting for her MRI.
The Neely Update for Monday
Neely’s MRI that was scheduled for today has been postponed until tomorrow. She is still in PICU at GHS Childrens Hospital. Christy and Jamie are staying with her. The nursing staff has limited visitors. This recovery period for ADEM is critical for Neely and she really needs her rest. Hopefully we will know more about her progress from the MRI results tomorrow.
The Weekend Neely Update
After all the good news to report for Friday, later in the evening the nurses discovered that the vein her IV was in collapsed. So they put it in her right foot (its already been in all the other limbs). They giver her all her meds through the IV and its almost too much for her little veins. Lets hope that this one holds out, next step would be neck or hip. She had some trouble sleeping on Friday night, apparently the PICU was used for some overflow from the Greenville ER and there was a good bit of noise on the floor.
Jon and I went to visit on Saturday afternoon for a bit. Neely was out of the bed and in her Mom’s lap in the chair. She is no longer wearing the Dora hospital gown but has switched to her own Sleeping Beauty nightgown. She is experiencing some tremoring and seems to be a little frustrated by it. She tried to say something to her Dad, but we could only make out the word ‘Daddy’ before she gave up. The doctor says that as the feeling comes back to Neely’s body she will feel the ‘pins and needles’ sensation and it may be unpleasant. The seizure like symptoms are not completely gone but they are less and less and we are so thankful that we see such obvious progress.
For those of you who know Neely well, you know that she NEVER has a lack of appetite. Through this sickness, she has wanted nothing. But while we were visiting, she happily let Uncle Potter feed her Goldfish crackers and a banana. Her appetite is getting stronger everyday. Christy and Jamie report that her meals are more like snacks, but she is eating something and staying hydrated, and that’s all we can ask for here. So we left the hospital with a new confidence in seeing her progress, but still very anxious knowing we are not out of the woods yet.
Sunday morning I received a call saying that Neely was crawling (slowly) last night from one end of the bed to the other! This morning, Christy was on the phone with my parents and she held the phone to Neely’s face and she said “Hey Nanna! Hey Poppy!” Shortly after that, Christy was helping her stand on the floor and she took a few steps. Such a happy day to see her recovering so well. She is still in PICU. We are unsure of when she will move to a regular room. I will be sure to update when that happens.
Thank you all for your prayers. God is so good.
The Neely Update for Friday
Neely slept through most of the night last night-YEAH! It is such a blessing for her to get the rest that her little body needs. Christy says that she is much more alert this morning and she is looking around the room like she is seeing it for the first time. Christy says that she is a little timid because of it. So it seems that her vision is getting clearer. She says that Neely is trying to speak at times but it is difficult to understand.
They have not had to reinsert her feeding tube and they allowed her to rest without her ‘snow cap’ through last night. I think they are going to put it back on at some time this morning. After a review of her EEG, the Doctor says that the majority of her brain is showing ‘normal’ activity, but there are some questionable reports showing from the back of her head.
Oh behalf of Christy and Jamie and family, thank you! thank you! thank you!, for the outpouring of love and support that everyone has shown this family. Our friends and family have brought food, toys, gifts, cards, research, prayer, encouragement, and love continuously. We are all very grateful!
Uncle Potter and Aunt Carrie are going to check-in with Neely-bug this evening, so I am sure we will have more to report then.Some background on Neely’s story here.
***3:30pm update on the update***Around lunchtime today, Neely woke up from a nap and had applesauce for lunch. After lunch, she noticed the Tom and Jerry on the TV. She and her big sister, Ava, LOVE Tom and Jerry…who doesn’t?? Christy leaned down about that time to sit beside her on the bed and Neely, still watching Tom and Jerry, giggled her sweet little giggle!!!! The nurse who was in the room at the time, turned to Neely and asked, “Was that funny?” Neely replied,”you can come down too.” In Neely-speak, she was asking the nurse to lay with her on the bed too. It was very softly spoken and a little slurred but you could hear those words. Hallelujah! Those five little words are packed with so much hope and encouragement, I just had to share!
***5:30pm***Christy also told me that Neely clearly had full use and control of her facial muscles and she was able to move her arms and hands a little. I still didn’t think we were ready for smiles and laughs…but she just sent this picture! Go, Neely, Go!
The Neely Update
I talked with Jamie earlier today and he reports that they removed the feeding tube from Neely sometime during the night to help her rest better. They will need to reinsert it if she doesn’t want to eat on her own. She has sipped on some ice chips and sweet tea today. She is not resting as well as we expected. She slept last night from about 2am to 7am. That was her first nap in more than 24 hours. She is trying to rest today but Jamie says she is pretty fussy. I am sure that she is just uncomfortable. But she has to be relieved that the feeding tube is gone. It was worrying her to pieces last night.
The doctors have her on several antibiotics to help with infection, Zantac to calm her very empty tummy, anti-seizure meds, and some relaxation meds.
We are still looking for any and every sign of progress. This morning Jamie asked her if she wanted to watch TV and she said “Yes.” Its the little things in this slow progression to recovery. It seems likely that she will remain in PICU for the rest of the week and maybe through the weekend, but rest assured that she isn’t going anywhere with out her Baby doll (named Ava) and her baa-boo (her blanket). These two things are her favorites and an amazing comfort to her.
I will post more when I talk with them again tonight. Maybe I can get some more pictures on here.
It Has a Name
Neely’s condition has a name now.
Acute Disseminated Encephalomyelitis.
Her doctors says this is an extremely rare condition that he has only seen a couple of times in his 30 year career. This is how her doctor explains what has happened. When Neely had the stomach virus (now almost 2 weeks ago) it was a tough one. A 4 day virus. Her immune system was on it and came out swinging. Her immune system produced so many overzealous antibodies that they began to attack her brain. I know that this sounds very scientific here, just bear with me, I am not a doctor! Her brain has become inflamed and swollen in patches over her head. This has created those seizure like symptoms that I posted about earlier. To combat this inflammation, they are giving her steroid treatments. We have already begun to see the progress of this treatment. Neely was able to move her left toes, blink her eyes, and make a fist on command. These are huge accomplishments.
Currently, she is in PICU at Greenville Memorial. She has a feeding tube and brain monitors all over her head. To keep her from pulling at these monitors, they have wrapped her head in a huge bandage. Her mother lovingly refers to this as her “snow cap.” It looks as though she will be in PICU for a few days. We are not sure when she will be able to come home.
I will continue to post as we learn more. Thank you all for your thoughts and prayers. They mean so much to all of us.