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EEG Results are Here
Waiting for test results can be so hard!
And while we didn’t get the news that we hoping for, we are so grateful that Neely is doing well. She did a great job during her EEG. She did everything the technician asked and didn’t complain at all. Only once while she was trying to go to sleep (during the sleep portion of the test) did she whisper to Jamie and I and say, “I don’t like this, Mom.” Her courage and positivity in the face of everything she has been through literally makes my heart crumble to a million pieces.
At one point Neely said, “Mom, when I grow up, I’m going to sign-up here and be just like Dr. Morales.” Wouldn’t it be great if we could all just “sign-up here.” A child’s perspective is the most amazing gift and I wish that as adults we could still see the world through child-eyes.
Anyway, Neely did such a great job that we were able to breeze through all the parts of the EEG. Unfortunately, her test still showed the potential for seizures. The good news is that she even though there is potential for seizure, there was an improvement over the last EEG so we are hopeful that this news is just one more hurdle to cross and not something that she will live with permanently.
So what does that mean? It just means that we keep doing the same things we have been. We stay on the anti-seizure medicine, which is working well to control seizures for Neely, and we keep praying for better results next time.
Neely’s ADEM Recovery Update
We have a little sign hanging in our living room that says, “Everyday holds the Possibility of a Miracle” and not a day goes by that my eyes don’t linger over those words as I think about Neely’s recovery. It may only be for a moment, but those memories seem to linger just below the surface and remain as a constant reminder of everything for which we have to be grateful.
Last month we had a check-up with Dr. Morales. It marked a 2-year anniversary of us being released from the hospital. Neely, as usual, was so excited to see him. As soon as the nurse opens the door for us to go back to the exam room, Neely begins scanning the halls to see if she can be the first to see him and I always wonder if he has that effect on his other patients.
I’m fairly confident that she has few (if any) actual memories of the time that she was so sick, yet her fondness for visits with him is something that has been consistent from the beginning.
I’m not sure if/when/how we would ever be released from Dr. Morales’s care. We just haven’t gotten close enough to even think about that step – but I truly cannot imagine the day. I guess it would be weird if I insist on annual visits regardless. (HaHa)
Joey is a survivor of ADEM
I never stop being amazed and touched by the stories that come to us through this web-site. The brave mothers, strong children, and newly empowered patients that have fought ADEM and won are extremely dear to my heart. It is stories like this one of Mary and her son, Joey, that remind me how important it is to be your own best healthcare advocate.
I can’t thank Mary enough for allowing me to share her story through NeelysMiracle and wish Joey continued health and happiness.
This is Joey’s Story, told in Mary’s own words… (more…)
Google Answers HealthCare Questions for Frustrated Parents
Well, Not exactly. But it seems Google is the easiest place for Parents to turn. I connected with another Mom this week who is looking for answers (and hope) as her son recovers from ADEM. Her family turned to the Internet to find answers (and questions) because her instincts were telling her that she may not be getting the best advice from her current team of physicians. (It can happen – they’re only human)
But my conversation with that Mom has me thinking….. about the same thing I’ve been thinking about for over a year. When you need medical advice, and you don’t have confidence in your existing physician (for whatever reason), Where do you go? Who helps patients that are stuck in the referral waiting period, in the next round of tests, or in the bureaucracy of healthcare/insurance providers? Where or who can those patients turn to?
For everything that I have learned over the 18 months talking with other parents and healthcare providers – There still isn’t a good answer to that question. As I talked with this Mom, and she shared her fears for her son, I still felt the same familiar frustration…. that when you need help fast – your options are limited.
I don’t know the answer, but I know I will keep asking the question until we figure it out.
One-Year Seizure Free in ADEM Recovery
Yesterday was a BIG day for us! September 29 marked the one year anniversary of Neely’s last seizure. That means one full year of being seizure free, one step closer to eliminating anti-seizure medicine, and one huge step toward getting back to “normal.”
To celebrate the day, Neely suggested we go to Gatti-Town for dinner and take a spin on the carousel. (It didn’t take her long to talk Ava into that plan.) We had a great time and wanted to share it with you. Enjoy!
The Toilet Paper Caper
You know the kind I’m talking about….
You discover a giant pile of toilet paper in your bathroom. Someone seems to have “accidentally” unrolled all the paper from the roll and left it lying in the floor of the bathroom. You take a deep breath and start walking toward the closest likely culprit.
Since this happens about 3 times per week at our house, there was no question that Neely most likely the suspect that needed interrogating. She was sitting criss-cross apple sauce in her room having a tea party (using real water which is against the rules…not sure how she slipped that one by me, but we’ll deal with that in a minute) when I approach.
“Neely, Did you unroll the toilet paper and leave it in a pile on the floor.”
No Response.
“Neely, Did you hear me?”
No Response.
“Neely, I’m not playing…Look at me.”
No Response.
This is the part where my “parent-of-a-child-recovering-from-ADEM-and-seizures” kicks in. I race over, drop to my knees, put both hands on her shoulders and look right into her eyes. I’m sure my voice sounds frantic and I continue to say, “Neely, can you hear me? Are you OK?”
This whole routine lasted less than a minute but felt like much longer. (Long enough for my heart race, my mind to start calculating next steps, noting the time, and trying to remember where I laid down my phone so that I can call 911)
When Neely starts to smile…followed by a giggle eruption….followed by “I’m just teasin’ Mom.”
Really? The child is a mastermind.
Not only did she cleverly distract me from delivering a good strong toilet-paper-caper punishment, she also distracted me from the “real-water” tea party she was having. I was so relieved that she was fine and frustrated that I had been duped by a 3 year old that I just sat down criss-cross applesauce and joined the party.
Those daydreaming looks and blank stares are indicators of a seizure occurring or about too. (At least that what it has been like for Neely) And in many of cases they are also JUST Blank Stares. But it never stops my heart from skipping a beat when I see her drifting off to dream-land.
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…)
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…)
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.
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…)
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.
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 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.
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.