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Is there anything harder than waiting for MRI test results (or any test results) for that matter? We have certainly been through our fair share of ‘hard stuff’, and while treatment can sometimes be hard too, at least you know you are making progress. Waiting for test results is like treading water – no progress – no forward motion.
The Thursday and Friday before Neely’s MRI, we distracted ourselves by volunteering and participating in the 2012 Radiothon to raise money for Greenville Children’s Hospital. Going to events like this one, help Neely to think of the Children’s Hospital as a fun and happy place. I like that she has so many good memories there to help outweigh the bad ones. (It works for me too!) She was thrilled to meet Miss South Carolina and get to try on her crown. (And by the way, over $317,00 was raised for Greenville Children’s this year through the Children’s Miracle Network Radiothon.)
We didn’t have to distract ourselves for long post-MRI. Luckily, our Pediatric Neurologist is super-quick when it comes to getting back to us with results. One of the many reasons we are thankful that Dr. Augusto Morales is in our life. It was barely 24 hours before we got a call and could begin to digest next steps. And we were relieved to have good news this time!
Neely’s MRI looks very good. I haven’t seen the images myself, but Dr.Morales says there was almost no change at all from her last MRI. That means, we still have some scar tissue, but we don’t have any recurrence of ADEM, no lesions, no tumors, no inflammation. And that is a lot of big scary monsters that we get to cross off the list!
With that news in hand, we are now focused on the bad EEG and everything that we can do prevent or avoid seizures and regression. We have spent this week talking with many of Neely’s doctors and seeking advice. Neely’s pediatrician is Dr. Justin Moll of Parkside Pediatrics in Greenville, SC and he has been extremely helpful to us. While he is admittedly not an expert in ADEM, he has been helpful in working with us to collect information, absorb the full scope of Neely’s test results and determine the list of questions that need to be asked…and to whom! I can’t begin to tell you how comforting it is to have him just to talk through ideas and scenarios. If there is one thing I’ve learned throughout Neely’s illness it is that you can never ask too many questions and you can never solicit the support of too many people.
There are still a lot of things that we don’t know, and we are working on those things. But these are the things that we are feeling good about today:
1. Neely has 2 laser-focused parents working as her health-care advocates and we will not leave a single stone unturned.
2. Neely has an amazing team of physicians working on her behalf to solve this latest challenge.
3.Neely has a good MRI result – and enough courage and strength to move mountains. She’s demonstrated it over and over again.
4. We are believers in Miracles! There is not a test in the world that can show the impact of prayer and positive thinking. And we believe in Neely.
We’ll keep you updated as we continue to understand the new set of challenges ahead. Thank you for keeping Neely in your thoughts.
“The MRI results will be important.” That is what continues to be reinforced to us by all of Neely’s medical team. This test will help us to determine if there is any recurrence of ADEM or anything else that could be contributing to the mis-fires that we see in Neely’s EEG. Neely’s MRI yesterday went just as planned. She knows the drill pretty well at this stage of the game, but we still walked through the procedure with her ahead of time to make sure she knew exactly what to expect. She was nervous about the IV, but knew that everything would be easy once we finished that part.
The nurses at Greenville Children’s Hospital are wonderful! (I really just can’t say enough good things about them.) Neely wore a light blue hospital gown that was so long it flowed behind her on the floor. The nurses just gushed over Neely’s long blonde hair and ‘blue gown.’ Their sweet words of encouragement and Neely’s imagination immediately transformed her into Cinderella. She strolled around in the waiting area as if she were walking through her own private castle. I wish I could have taken a picture, but there are no electronics allowed in that part of the testing.
The child life specialist joined us just before the procedure to make sure Neely had everything she needed. There was an miniature MRI machine set up with a monitor where Neely could help various toy animals get their MRI test. We scanned an alligator,an elephant, and even a chicken. It was a great opportunity for Neely to make sure she understood exactly what was happening.
For Neely, coping means understanding what is happening and what to expect. I think that by participating in the procedure, she feels like she has some control over the situation. Neely helped the nurses clean and sanitize all the little parts and pieces. She even helped the nurse and doctor to push the medicine into her own IV. I’m sure I’ve said this a hundred times, but I wish I had only an once of the courage that Neely does. She is one brave little girl! She never shed a single tear and even told the nurses “Thank You” when they were finished.
With the test behind us, the only thing left to do is wait for results and pray for the best. This is the part that I like least. It is comforting to have a plan and to begin working toward a goal. We’ve had all the necessary conversations with our trusted medical advisors, we’ve adjusted Neely’s medication, and the information we need to determine next steps is on the way. We’ll keep you posted when we know more. Thank you all for your continued support.
When does ADEM end? I wish we knew. I thought I’d be writing this week to tell you that we had crossed the recovery finish line. Neely had an EEG last Friday. We went into the test extremely optimistic. Everything seemed to be in her favor. Her last test results were phenomenal, she started Kindergarten and is doing great, and she is still seizure free. We were expecting to get a call from her neurologist, Dr. Augusto Morales at Greenville Hospital System to tell us that Neely had finally won, that we had beat ADEM, and that she could safely begin to ween off of her seizure medicine.
That didn’t happen.
Neely’s EEG was dramatically different from her previous test. Rather than the 2-3 ‘mis-fires’ that we saw on her EEG over the 2 hour test last year, we saw 15-20 ‘mis-fires’ in a window of 30 seconds or less in the EEG last Friday.
Dr. Morales believes Neely has a condition called Epileptogenesis. When a brain is severely traumatized (as Neely’s was) the brain can often go into a period of ‘shock’ (for lack of a better word) where brain waves appear normal. That is where Neely has been the last 3 years. At some point the brain ‘remembers’ the trauma and begins responding as if it is being traumatized. That is called Epileptogenesis, a period where the brain learns/becomes Epileptic.
According to Dr. Morales, there is nothing medically that we can do to prevent this from happening. The medicines that are available can be effective at preventing seizures, but are not effective at preventing Epileptogenesis or Epilepsy or any other effects that could come from this condition. (there are many…still learning more here)
The area of Neely’s brain that is suffering is in the posterior areas. (Back of her head, just above her neck) This is the area that controls vision, plus a lot of other stuff. According to Neely’s EEG, there is a high probability that Neely will have seizure(s). (Dr. Morales said the chances are not as high as 90%, but also not as low as 10% which is where he would have put her chances last year) We just have to use medicine to try and prevent those seizures. And we have to work hard to help Neely deal with or cope with any difficulties that could arise from the Epileptogenesis or from side effects of the increased medicine.
Our next step is to get an MRI. The MRI will help us determine if there are any new lesions, irritants, or inflamation on the brain. Dr. Morales is going to let us know when he gets this scheduled. In the mean time we are giving her a significant increase in her medication. We are waiting and watching and praying.
Meanwhile, Neely looks perfect from the outside. She is playing, growing, learning, laughing and loving life. All I have to do is look at her to see that the test results don’t match the child. And that is some pretty amazing evidence that Neely is going to be just fine.
So today, I am so grateful for how far Neely has come, and for the families that we have met as a result of ADEM and I am asking for your prayers. Please pray for Neely’s continued health, for the doctors to have the foresight they need to help her, and for the strength that we all need to keep fighting.
Spring is right around the corner for those of us living in Greenville, South Carolina. We have already had enough warm, sunny days to give everyone a good dose of allergies and vacation-fever. Everyone I talk to seems to be planning for summer vacations, outdoor sports, and fun at the beach. We are too. But there is something else happening this Spring that leaves me with anxiety and a strong desire to talk about Neely’s Recovery and ADEM.
If you are new to Neely’s story, then it is important for you to understand that no-one really knows why ADEM occurs. There seem to be several identifiable triggers to ADEM, however why and when ADEM occurs is still a mystery.
Over the last few years, I’ve ready everything that I can get my hands on about the condition. I’m certainly no doctor, but I came across one, Dr. Benjamin Greenberg, that drew some interesting conclusions about the “when.” Based on his research, there are an increased number of ADEM cases during the Spring/Early Summer months. Which means that along with the beautiful tulips, sunshine, and blooming trees the next few months are going to bring an increased number of ADEM cases in children. And that terrifies me. Not because I fear Neely will get sick again (although that is always a fear) but because I fear that there will be other children who are diagnosed either too late or not at all. I can’t hardly bare the thought of it. And the only way to change it is to talk about it.
Awareness is key. Early detection and treatment is critical. Trusting your instincts about your child’s health is paramount. Share Neely’s story and others like it with your friends and family. We may never know the number of lives that are changed from hearing it.
What an amazing journey! I first learned about our friends Holly and Marisa, when a friend of Holly’s found this website and helped us to connect.
Holly and I talked for 45 minutes on our first call and I don’t think I even knew her name until the last few minutes. Yet, she immediately felt like family to me. It happens every time. The connection that I feel to other mom’s and families that have been through or are going through a traumatic illness is difficult to explain. That first conversation always brings an overwhelming sense of dread, relief and fear. Dread that there is another family living the nightmare, relief that there is a chance for me to use our story to support and encourage them, and fear that the recovery they are praying for may not be the one they receive.
Over the next 5 months Holly and I continued to talk over the phone. There were so many times that I wished we lived close enough to talk in person. I felt so far away – and wanted to do something more to help. But since we are on opposite sides of the country, it seemed crazy to even consider it a possibility.
That is until Holly and Marisa decided to travel to Johns Hopkins in Baltimore, MD to meet with several specialists that they hoped would aid in Marisa’s continued recovery. My first thought was – This is one AMAZING Mom! To help put this in perspective, you should know that Holly is a wife and mother of 2 children. Not only did she travel 3000 miles with Marisa, who is still recovering from ADEM, to strange city to meet an entirely new set of doctors; but she had to leave a wonderful husband and 4 year old son behind for almost 7 weeks to do it. Holly is one of the strongest and most courageous women I know.
I couldn’t wait to meet her in person and knew that Baltimore might be the best opportunity we would have. Johns Hopkins is a little over 9 hours from our hometown which means we could make the trip in a week-end so we decided to hit the road on Friday, September 30. (Unfortunately Neely had a bad cold, and we felt like the 20+ hours in the car would just be too much for her so just Jamie and I that made the trip.) We stopped in Virginia on Friday evening to have dinner with friends and a good night’s sleep. Many thanks to Dustin and Mary for the hospitality.
(Incidentally, we also stopped in Virginia on the way home to have a delightful discussion with one of Virginia’s finest and get a souvenir speeding ticket. Many Thanks to the officer who pulled us over.)
We arrived in Baltimore before noon on Saturday. The last 30 minutes seemed to take hours and I literally thought my heart was going to beat right out of my chest. I was so excited and anxious to meet Holly and Marisa. When we arrived at Ronald McDonald House (more on this later – it is an amazing place!) Holly and Marisa came down to greet us and we gave each other the biggest hug! I’m sure little Marisa was thinking, “Who is this crazy lady crying with my Mom?” but she followed her Mom’s lead and took us right into the toy room where we could get to know each other better.
We never missed a step and eased right into a conversation that took us well into the afternoon before we thought to stop for lunch. Jamie got in some great playtime and color time with Marisa while Holly and I talked and talked and talked. There was no question that Marisa had stolen the heart of everyone at Ronald McDonald House. People would float through the room from time to time and always stop to say hello and see her beautiful smile. She is such a sweet, happy little girl! I can only imagine how she will feel as an adult when she looks back on this time and remembers how much she was loved and hard her Mom fought to get her the care that she needed. (My prayer is that when that time comes, ADEM is nothing more than a distant memory from her childhood and that there are no visible reminders.)
Marisa is doing great. If recovery has anything to do with attitude and spirit (and we know it does) than there should be no doubt that Marisa will eventually overcome all her current hardships. Her sweet smile can truly brighten the room and the light of optimism and enthusiasm in her eyes is something from which we could all benefit. I just couldn’t stop hugging her!
We all went to lunch, visited the National Aquarium, walked along the Harborplace River Walk, and even squeezed in a late dinner. Marisa was such a trooper. She played and laughed and even managed a short nap while we walked and talked all over Baltimore. It was a wonderful day and the time seemed to go by so quickly.
After dinner there was still one thing left to do. I’d hoped to have an opportunity to see the statue of “The Divine Healer” that towers over the administrative lobby of one of the Johns Hopkins buildings. And I am so glad that we were able to go there together. It still gives me chills to think about that beautiful room and all of the healing prayers that have been spoken there. I took a few pictures but must apologize that they do not even come close to showing the true awe that comes with seeing it in person.
Donated to the Johns Hopkins Hospital by Baltimore merchant and philanthropist William Wallace Spence, “The Divine Healer” is a truly majestic statue of Christ that has offered hope and a place of quiet reflection for patients and families since 1896. People come there to pray for healing, among other things and to find inspiration. But what they leave behind will literally bring you to tears.
Carefully placed at the feet of Christ are flowers, letters, tokens of affection, cards and pictures (mostly of children). You can’t help but feel the prayers that must have accompanied each piece and the pain and hope of each person that left them there. Over 100 years of hopes and prayers fill that room.
It is an overwhelming experience and something that I will never forget.
After a day of laughing, crying, walking in the rain, and talking until our voices were horse we couldn’t think of anything better to do than take pictures. I say that in an effort to apologize for our appearance J I hope you enjoy the pictures.
I’m so grateful to Holly and Marisa for spending the day with us but I am even more grateful for their friendship and their ability to inspire others.
Ignoring geographic boundaries, fighting against all odds, and refusing to take “No” for an answer; Holly and Marisa are miracle makers and the world needs more people like them.
Ok, I am a wife, a mom, an advocate for children, and a marketer. (That’s the start of the list anyway.) And last week my worlds had a little collision. I was actually traveling to a conference for ScanSource, Inc (where I work as a Director of Marketing) and had the opportunity to meet and talk with Roy Spence. (In my opinion, one of our world’s most amazing marketers)
He was inspiring! His message was about finding your purpose in life, and then finding a way to fulfill it. Since Neely’s battle with ADEM, I have felt constantly lead to share her story with others. I truly cannot stop. There is a constant pull on my subconscious to do more, say more, talk more about her illness and the journey that we traveled to help her recover. Quite honestly, sometimes I think the people around me get tired of hearing me talk about it but that doesn’t silence the voice in my head that tells me to keep going.
Roy’s advice to me was very simple. “Write the book, Christy, and let the rest of the pieces fall where they may.” It’s not revolutionary advice, but since it came from a revolutionary thinker I’m taking it that way. My conversation with Roy ignited a new spark. It is yet another turning point (or pushing forward point) on this journey that began with Neely’s Miracle. Below is a video of the presentation that Roy gave at the conference. It is well worth the hour-if you chose to watch the entire clip.
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.
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)
A few weeks ago I wrote about Marisa, a sweet little girl that was fighting to recover from Acute Disseminated Encephalomyelitis (ADEM) in “ADEM Recovery Looks Like This.” At home now, Marisa is continuing to make progress. With ADEM Recovery, progress usually comes fast once treatment begins and then slows down.
Hours and hours of therapy are needed to take even small steps. (Literally!) Marisa and her Mom are spending as much as 6 hours each day in therapy to get her as close as possible to her Baseline.
Baseline. That’s the word you use to refer to the way things use to be. Marisa’s baseline is equal to her “normal” before ADEM. Just establishing baseline can be no small feat for Mom and Dad. I remember the therapists (Neely had 5 that each focused on their area of expertise) asking me questions about the tiniest details of how she did things pre-ADEM.
- “Does she hold a crayon most often with a fist or between her thumb and index finger?”
- “How long can she stay focused on a single task without interruption? Minutes? Seconds?”
- “How many and which colors does she know? How many letters?”
All therapists and doctors combined, I must have answered hundreds of questions about Neely’s Baseline. It gave me an entirely new perspective for noticing the little things. She was only 2 and a half when diagnosed, so she hadn’t been holding a crayon for that long. And I had never timed and recorded her ability to focus on a task. It was great mental gymnastics for me and her Dad!
In spite of everything that Holly, Marisa’s Mom, is focused on right now, she took time to put pen to paper and share Marisa’s Story with us. Holly is an amazing Mom, who is still fighting to make sure Marisa has everything she needs to heal. By reading her story, we hope you’ll see the importance of taking an aggressive approach to your health care. You are your own best health care advocate.
This is Marisa’s Story in her Mother’s own words.
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…)
Not long ago, I received a call from a Mom looking for answers. Her name is Holly, although we talked for almost an hour over the phone before I even knew her name. I heard myself in her voice as she told me about her sweet little girl, Marisa, and within minutes felt as if I’d known her for years. (more…)
We had a great time participating in the 4th Annual Run for Thought (Presented by the Roger C Peace Rehabilitation Center) to raise money for the Brain Injury Association.
Neely spent time at Roger C Peace while she was recovering from ADEM and the therapists there were wonderful. The Run for Thought was a great way for us to give back. I thought the 5k might be a little much for the Thompson Crew – so we opted for the 1 mile fun run and even convinced Neely’s Aunt Carrie and Uncle Potter to join the fun. I was grateful to have the help when Neely decided she needed a “piggy-back ride” after about 1/10th of a mile. Whew! (more…)
Dance Marathon is a nationwide movement, involving college and high school students at over 150 schools across the country who raise money for the Children’s Miracle Network hospital in their community.
Last Year Dance Marathons raised over $6 million dollars for local children’s hospitals. And that is pretty amazing!
We arrived at CU at 5:00 pm on Friday Evening but the dancing didn’t stop until almost 9:00am the next morning. Neely’s coach turned into a pumpkin shortly after mid-night so we caught a few zzz’s at the local Courtyard Marriott before heading back to finish out the party early on Saturday. (more…)
She certainly isn’t old enough to tell her own story at this point. I hope that one day she will – and that she will be a contributor to the thoughts and memories that are published here. But until then, I want to do my best to tell that story for her.
Sometimes I catch myself just staring at Neely while she plays. She completely amazes me. I look at her eyes and I think about the brain that is thriving inside her little head. I remember those MRI images and Dr. Morales’s descriptions of what was happening as she healed – and I just stare in wonder and amazement.
And I see other people doing that too. We have been fortunate to have so many people following her story, praying for her health, and supporting our ability to cope ~ And now they stare in amazement too. I wonder if Neely notices. If she does – she doesn’t say it.
People say things like, “Your prayers were answered. She is a miracle.” And they are right. My prayers were answered and I do believe she is a miracle. But I can’t help but think of all the parents that still pray for the health of their children. Their prayers have not yet been answered, and no one can explain why. There is guilt that comes with surviving.
Neely’s story has given me the opportunity to connect and talk to parents all over the country. Some of those parents are still praying for answers and for their child’s health. I think Neely’s story gives them hope. And that inspires me to keep telling it.
Many times people have said, “God must have something very special in store for Neely,” or “I can’t wait to see what Neely becomes.” That is a heavy burden for a 4 year old to carry. Jamie and I have spent a lot of time talking about that and of course we wonder too, what she will become. But not because of her recovery – Just because she is our little girl. I heard Dr. Morales say once that Neely’s story has created so much awareness about ADEM (he was referring mainly to our area of SC) that she has already helped many other children that may develop it and the doctors that need to diagnose and treat them.
I like to think that by creating that awareness, Neely has already achieved “that something very special that God has in store for her.” And maybe some of that burden will be lifted. I want to carry that burden for her – Every parent would feel the same way about their child. I do wonder how other parents manage those burdens and if the choices we are making to share her story, are the right ones. We just try to stay focused on the opportunity that is in front of us. That is all that we can do.
On December 1 we decided to embark on a journey to de-clutter our house and our lives. More than anything we enjoy spending time together and by spending less time taking care of “things” – we could do just that.
I was afraid that our aspirations were a little high. 25 items to give, trash, or sale each day seemed like a lot. And for a person that keeps a pretty tidy and organized house, I wasn’t sure we could do it. Whoa – Was I surprised. We found 625 items and more!
Check out our progress on this project and see how much time and space we created for our family.
We had a very frustrating Doctors appointment last week. Not because of the doctor or the visit – But because of the news we heard. I’m trying to stay focused on the positive and things that we can control. (But I did take one full day to just have a pity party.)
Neely is starting to struggle with weight gain. And while this seems like such a small problem compared to the things that we could be facing, it still makes me worry. She had gained 7 pounds since out last visit (Just 6 months ago). You’ll just have to trust me when I say – We live a healthy life-style, and Neely is a healthy eater. She doesn’t think twice about snacking on raw carrot sticks. So we have to look at the possibility of other things that could be causing the weight gain.
It could be a metabolic or thyroid issue. (And of course we still have to work hard to rule out diet and exercise as a culprit)….so this is where we stand.
We will have a check up in January and Neely will be tested to check for any metabolic or thyroid issues. And in the meantime, I am keeping a food journal and an activity record to show her doctor at that appointment. (It is a bit difficult to keep an activity record for a very active 4 year old. I’m not sure how to track jumping up and down while asking a million questions
When we were at Roger C Peace, one of the Doctors told us that if there was damage to her brain from ADEM trauma, it would likely start to show when Neely hit the age 4/5 stage of growth and development. That Stage is the second of 3 major brain development stages that all children have. The third is during the teen-age years. (I realize that it is all a guess, and no one can no for sure) But that conversation at Roger C Peace is constantly in the back of my mind, and the fact that Neely’s 4th Birthday was just a couple of weeks ago didn’t help me to forget it.
I actually hope that I am wrong about her diet – and that the weight gain is a diet and exercise issue. Because that would eliminate my fear of her having any long term damage as a result of her condition. So we are staying focused on those things that we can control – and will be armed with records and questions when we arrive for that check-up.
Our Project of 25 Days to Give it, Trash it, or Sale it is still going strong.
Check out the progress we are making to un-clutter our lives and reclaim family time!
She pointed out each little scar that she found on my sister and asked all sorts of questions about where it came from, what happened, and if it still hurt. And then she made a comment about her own scars. (more…)
I read a great article about the Physicians Office of the Future and wanted to share the vision. Yes, this article is posted on the website of an IT trade publication. And it is ok for you to call me a nerd for reading it. (Assuming you haven’t already put me in that category.) (more…)
So much of what we have learned the last two years is about prioritizing and time. Of course, we have always known the value of family time and special moments with our children. But Neely’s illness gave us an entirely new perspective on the importance of living every day to its fullest and not sacrificing those things that you deem most important for the sake of things that you just feel obligated to do.
So we began to look for ways to simplify our life. Learning to say “No” without feeling guilty, setting priorities that help us meet our family goals, and eliminating the clutter in our lives. I’ve become fascinated by the idea of the minimalist. Now don’t think I’ve gone overboard, I’m not on the brink of selling everything we own to go and live in the Rain Forest. But I do believe that we spend way to much time collecting, caring for, and managing things.
So we are trying to stop. Being that this is the Holiday Season, interwoven with family time and the spirit of giving, it seemed like a great time to take our minimalist approach to a new level. And we decided to take a challenge.
For each of the 25 Days leading up to Christmas, we are going to find 25 things in our house that we can give away, throw away, or sale. That’s a total of 25 days and 625 things! I wish I could put a number on the space that we will un-clutter and the time that we will reclaim.
This challenge is a little different from the typical posts that you find on NeelysMiracle. (Don’t worry – there will be plenty of Neely-isms and health updates as well.) But because this challenge is something our family is taking very seriously, I plan to give you a quick update each day to let you know how we are doing. If you want to follow us along on this project, check out our Project Blog.
We’re also inviting you to join us in this challenge. Empower yourself…Take control of your time…and take back your life. It’s as easy as asking yourself 3 questions: Give it? Trash it? or Sale it?
So we went to the Dentist this week for a simple cleaning. The entire family had appointments for the same evening – It’s just easier for me to schedule that way. And I was dreading the appointment for days leading up to it.
The last time we took Neely to the Dentist, it didn’t go so well. I’m sure that she isn’t all that different from a lot of other children in that regard. She cried, covered her mouth, and refused to even get near the chair when it was her turn. We promised her everything – just to get a quick look…But she would not budge.
I was a little worried that this appointment would be the same. Since Neely’s illness, she will not let anyone near her mouth. (I assume from all the medicine that she had to take – She has just had enough of people trying to put things in her mouth.) And while she is really enthusiastic about brushing her teeth, she refuses to let her Dad or I help her brush to make sure that she is doing a good job. We just have to hope that she is. Which made me worry that there might be a cavity or two…..which would lead to a filling…which would lead to another tough appointment. Ugh!
So I really hoped that our Dentist would be able to give her a good cleaning and examination. I have to admit – she talked a good game leading up to the appointment that day. She was completely confident and actually seemed to be excited about going. (I was sure that she was putting up a front – That’s how Neely rolls
To my delight and surprise, it wasn’t a front at all. When it was her turn, she hopped right up in the chair and flashed those pearly whites. She couldn’t have been more proud to show off her brush-work and to walk away with a treat bag for being such a good patient. And to my complete relief – No cavities!
I think this appointment may have broken the cycle of “scary dentist appointments” for me and Neely. Next time, there will be no dreading!
When Dr. William Schmidt offered me an opportunity to tell Neely’s Story to the Pediatric Residents of the Greenville Hospital System, I was taken completely by surprise. I couldn’t believe he was offering me such an amazing gift, and all the while, saying that it is GHS who should be grateful.
I couldn’t wait.
The first step was meeting with Dr. Schmidt and Dr. Kerry Sease. Dr. Sease is the Program Director for the Pediatric Residency Program at GHS, a Mom, and a phenomenal leader in community outreach and programs that advocate for children. Not necessarily in that order. (And by the way…The Pediatric Residency Program at GHS is the #1 Program in the country!) In my book…She is a Rock-star. And if you met her, you would probably feel the same way.
We scheduled the day of the class for Friday, October 29. And all that was left to do was tell the story. I spent a lot of time thinking about what our story might mean to a classroom full of Pediatric Residents. It was important to me that they take something meaningful away from the training. It wasn’t going to be enough just to tell our story. I wanted to make a connection with them. (more…)
When I received the Voice Mail, I have to admit, I was glad that I missed his call. And I’m pretty sure he was glad too. It’s hard enough taking that first step into a cold pool without jumping right off the diving board.
His message was simple…. Mrs. Thompson, I’d like to have an opportunity to talk with you, but I understand if you don’t call back. He left his home phone and mobile number and never once mentioned Christie Pediatric Group, which made me think that he was calling on his own behalf and not on theirs. I took that as a sign of sincerity. I didn’t want a visit from a “sacrificial lamb” sent to “deal with the angry mother”. (I think that is probably how they viewed me…maybe some of them still do.)
I knew immediately that I would talk to him – that wasn’t a difficult decision. The question was how, when, and where? And I really didn’t make it easy on him. I wanted to meet with him in person, at a place that I felt comfortable, and soon. Part of me believed that Neely’s Story must be having a negative impact on him and the Christie Group…and that was the reason for his call. But I hoped that his intentions were pure and that he was calling me to apologize, not to appease.
And he was.
He apologized and took complete ownership for his mistakes. In fact, he tried to take ownership for everyone in his practice, but I wouldn’t let him. Each of the Christie Pediatric Group doctors who played a role in Neely’s illness had an opportunity to set us on the right path, and most didn’t.
Dr. Springle said he felt instinctively during one of our earlier visits to his office, that something was different about Neely. He just didn’t trust or take action based on those instincts. As we talked, I told him I hoped he would think about Neely every time he treats a sick child, and he said he already does. He also said he thought he was a good listener before…but now, he knows he still has room to grow in that area.
And he asked for my forgiveness, which is something I couldn’t have given him until he asked for it. And that opened the door for both of us to heal.
Dr. Springle did a really great thing. He took an opportunity to look at Neely’s Story and objectively see the part he played in that story. He admitted his mistakes, took ownership of them, and committed to change for good. Some doctors would have dug in their heels and continued to defend their actions (some doctors still are.) But Kevin Springle chose to do it a different way. I’m glad he did. I think he will be a better doctor because of it.
And while we will never again be patients at the Christie Group, I have to admit that Dr. Springle is on the very short list of Doctors that I would call if anything ever happened to Neely. And if you’ve been following this story….you know how much that means. Let’s face it….if he ever weighs in on Neely’s Medical Care again, I think he might recommend running every test under the sun and calling in every specialist available.
One doctor does not make a practice. Just like any organization, I think people have to work together under a common set of values. I think that one day Dr. Springle might grow to find that his approach to patient care is very different than some of his colleagues. I wonder if his example will be a catalyst for change in them….or maybe there is something completely different ahead for him. I can’t wait to find out.
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.
When I started telling Neely’s story, the goal was very simple….reach as many parents as possible, and if we’re lucky, maybe we can prevent another child from going through something like Neely did.
But it didn’t take long to realize there is another opportunity in sharing Neely’s story. A chance to reach the doctors of those children. Imagine my complete surprise and excitement when Greenville Children’s Hospital asked me to share our story and a message about healthy doctor-patient relationships to their Pediatric Residents. They gave me a completely different perspective on sharing our story.
I couldn’t have asked for a better opportunity to be any closer to the “front lines” than talking with tomorrow’s pediatricians. And what better Residency Program to start with than the #1 Pediatric Residency Program in the country. (I had no idea that GHS Children’s Hospital had the #1 program – but I’m not surprised.)
So I’ve been spending a lot of time thinking about what to say to those future pediatricians….And how to tell our story in a way that might forever change the way think about and interact with their patients. I’m just trusting that the right words will come to mind when the time arrives.
Best of all, they asked me to bring Neely at the end of the class, so that she can meet everyone. I’m not sure how she is going to react to a room full of “white coats” so we may have to have an “off with the coats” session just prior to her arrival. Stay tuned for plenty of pictures and details….
I heard a statistic (trying to chase down the original survey) that in 44% of all malpractice cases, the patient originally seeks legal counsel not because they are convinced that a medical error has been made, but because they believe their healthcare provider is withholding information.
It’s about trust. I think that in too many cases, Doctors mistakenly believe that their medical degree grants them immediate trust upon entering the exam room of their new patient. But this is not the case. It seems that the Medical degree only grants them the key to the exam room, they still have to earn the respect, trust, and confidence of their patient. Tough job, but not all that different from any other service provider.
And that got me thinking…..In today’s world where information is truly at the fingertips of anyone with a computer (which is almost everyone) I can start to build confidence in any product or service provider by going to their website or reading reviews about them on another site. It’s hard to name a product or service where this is not possible. Think about it – Where is the first place you go to find a contractor, landscaper, plumber, or electrician? It use to be the yellow pages – now its Google. And there is no shortage of information out there about any of the above mentioned.
So why isn’t it that easy to find Healthcare Providers? There are medical care “review” sites out there. But there aren’t very many, and they aren’t very good. If you know of one, please share the link in the comments section. Most hospitals and some Doctors Offices now have websites that are pretty robust in terms of their services provided and facilities……But there are no patient reviews in most cases. That means I can’t start to build confidence in my Doctor until he or she walks into the exam room and starts talking.
First impressions are generally made in approximately the first 30 seconds. That is not much time to decide whether or not you trust the person who very literally could be holding your heart in their hand. So I’m curious….You know how I go about finding/trusting a doctor . But how do others do it?
If I were a doctor, I’d take every opportunity to “get out there” and introduce myself to the world. If your good…and your patients attest to it…it would be hard to rise to the top.
We were so excited to participate in the 2010 Radiothon for the Children’s Miracle Network last week! It was an unbelievable experience to drive down the road and hear Neely’s Story broadcast over the radio.
I heard one version LIVE and literally had to pull over into a parking lot to listen, because I couldn’t see through all my tears. Obviously, I know the story pretty well, so I’m not sure why hearing it on the radio brought me to tears. I felt a little goofy and I’m sure the cars driving by me thought I was having a nervous breakdown or something. But I couldn’t stop listening.
Hearing our story in the Radiothon felt like the first big step in our efforts to empower patients. There ARE doctors and hospitals that are committed to the same effort. The Greenville Children’s Hospital is one of those, and we are grateful to them. They impress me because they never assume that they are doing everything right, that they have all the answers, or that they don’t have anything to learn. In fact, its just the opposite. We need more doctors like Dr. William Schmidt, MD, PhD (Medical Director for the Children’s Hospital)
If you missed the 2010 Radiothon, and would like to hear our story, there are 3 versions posted in the News Section of this site.
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!
There is that moment where you are sitting in the medical office, and the Doctor begins, “There seems to be a problem with…” or “The test shows an abnormal result…” And the train leaves the tracks. Depending on how much information you have been armed with prior to this conversation, this could be when your crisis begins.
Through personal experience and observance of others, when the train derails we grieve. We don’t understand. We cry. We get angry. We may become resentful of healthy people around us. We ask, “Why Me (us)?” Most people believe that grieving is what happens when someone dies. This is not the only time we grieve. Dr. Pauline Boss is a counselor and professor from Minnesota who has done ground-breaking research on the theory of ambiguous loss and the grief caused by it.
In her book Ambiguous Loss: Learning to Live with Unresolved Grief, she discusses examples of situations where we experience ambiguous loss: dealing with Alzheimer’s Disease, MIAs , incarceration, terminal diagnoses, a parent who leaves a child, and permanent medical conditions.
Elisabeth Kubler-Ross’s five basic stages of grief are: Denial, Anger, Bargaining, Depression, and Acceptance. You won’t necessarily go through these stages in order and you may experience some simultaneously.
Take this information and go back to that moment in the doctor’s office. As you receive the news, you enter the first stage of the grieving process. Denial can be disguised as disbelief. And truly, it usually is unbelievable to you that you could be receiving this news. Your mind fires questions at you that usually start with ‘Why’ and fear of what lies ahead can overwhelm you.
Denial can quickly turn to anger. In the anger, questions like “Why didn’t we check it out sooner?” or “Why didn’t you take better care of yourself?”, or “Why is this happening to me (us)?” might pop into your mind. You are caught in the middle of an indefinable loss from which you may or may not find closure. You may never have the answers to these questions. You grapple with the loss of what you used to have or the loss of innocence. You can’t try to go back. You have to proceed with courage.
When you feel your train fly off the tracks, the best advice I can offer is this: Seek knowledge, seek interaction, seek respite, and seek joy.
Meet our friend, Matthew.
What continues to amaze me, no matter how many times I hear it, is the power of a Mother’s intuition. There truly is no medical practice in the world that can compete with what God instills naturally in the DNA of a devoted mother. My friend, Abby Zaffuto, is no exception.
A mother to three children, it is her youngest, a son, that sent her on a path for answers. No one knows what is truly hiding behind the smile of a Mother. Relief, exhaustion, fear, anticipation…..for Abby, it’s determination. A Determination to find a diagnosis and treatment for her sweet little boy.
Abby is an amazing and courageous Mom! Her determination saved her son, and gave him something every mother dreams of for her child…Health, Happiness, and the promise of a better tomorrow. It really is… the stuff dreams are made of.
This is Matthew’s story, told in his Mother’s own words.
My third child was born on a sunny March day in 2008. We were expecting a big bundle since his sisters were rather chunky and were a little surprised when he weighed in at 6lbs 15oz. His delivery was not complicated by any means and we were thrilled to meet our new baby boy.
He was just perfect. His Apgar scores were good, he passed all his newborn screenings, and he even took to breastfeeding immediately. We left the hospital having no idea of the journey on which we would soon embark.
This is the story of our little boy with global developmental delays and our search for answers.
I suspected that there was something wrong with Matthew when he was just three months old. Perhaps I was just overly worried; perhaps it was mother’s intuition. Matthew was late to smile, something I mentioned to our pediatrician at his 3-month well check.
Our doctor wasn’t overly concerned and when he started to smile several weeks later, I felt a sense of relief.
However, as the weeks went on, I again began to worry. He didn’t seem as alert as his sisters had been, he showed little interest in toys, and he seemed a little “floppy” and lacked head control. At six months, I again mentioned my concerns to our pediatrician who this time referred me to BabyNet. (BabyNet is South Carolina’s IDEA Part C inter agency early intervention program for infants and toddlers under three years of age with developmental delays or conditions associated with developmental delays.)
Matthew had an assessment done at our home and was indeed found to have global developmental delays. This did not come as a surprise to my husband and I, but it was still crushing news. I’m not often impressed with government-run agencies, but we were pleased with the process and happy that Matthew was soon able to start therapy.
Almost immediately, Matthew began a grueling round of occupational, physical, and speech therapies that still continue today. As thankful as we were (and still are) for his entire Early Intervention team, there was still a huge piece of the puzzle that was missing. The WHY? Why was this happening? What did it mean? What exactly was wrong?
Over the next two years, we would attend a string of seemingly endless doctors’ appointments. We saw
a developmental pediatrician, a neurologist, a geneticist, and gastroenterologist, and an ENT. Matthew was tested for numerous genetic conditions. At one point, we were told that he could have muscular dystrophy and we anxiously awaited the test results for that.
Thankfully, that test was negative (as were all his tests) and I then decided that we could deal with anything as long as it wasn’t a fatal condition. It’s funny how life experiences change your perspective on things. I had been terrified of autism but all of the sudden it seemed not so bad.
All of our doctors were basically scratching their heads. An MRI showed a normal brain structure, a microarray DNA analysis showed a normal baby boy, numerous blood tests—all normal. When he fell off the growth chart and was classified as “failure to thrive”, we saw the GI doctor who ran his own tests. All normal.
She asked if he’d had frequent ear infections? No. In fact, he had just one. We were referred to an audiologist and an ENT and were shocked when we learned that he basically couldn’t hear.
He had tubes placed in May of 2009 and we were thrilled when we started to see developmental progress almost immediately. Within a week, he was crawling and sitting up. He was no longer toppling over. Could this have been it? Was he just dizzy this whole time?
The months went on and I continued to monitor his progress. Every little thing he did was met with applause by my husband and me. Even his sisters would come running with excitement when he did something new. I once watched him struggle to reach a book on the floor and then he proceeded to rip it to shreds. He worked so hard to get to it that I didn’t even care.
However, by the next winter it seemed that his progress had once again stalled. As hopeful as I had been, I couldn’t ignore the fact that he was still really behind. He would soon be 2 and he still wasn’t walking. I was increasingly frustrated that no one could find anything wrong and I soon began to wonder if his problems were somehow related to the fluid in his ears. Maybe he just wasn’t “wired” right up there.
We had seen such huge developmental gains after the tubes were placed. And no one had ever been able to give me a reason for the fluid being there in the first place. I had voiced my concerns to Matthew’s ENT but he really didn’t seem interested. I knew that he had never taken a comprehensive look at his medical history although I had come armed to every appointment with a binder full of records and reports. I had been told in August of 2009 that he had rather large tonsils and when I voiced my concerns about this to both the ENT and my pediatrician, it was dismissed.
I began to consider taking Matthew to a pediatric ENT. Unfortunately, Greenville does not have one, though I understand that they are actively searching for one. I knew I would have to travel but I was feeling desperate and was willing to go to any lengths. I considered going to Chicago to meet up with a friend of a friend who happens to be a pediatric ENT at the Children’s Hospital there. Before I did that though, I decided to contact a neighbor of ours who happens to be the Medical Director of Pediatric Sleep Medicine at the GHS Children’s Hospital. Perhaps he could direct me to someone a little closer?
My conversation with Dr. Dominic Gault turned out to be the answer to my prayers.
I told Dr. Gault about my concerns and brought him up to date on what had been going on with Matthew. I explained to him that I wanted to see a pediatric ENT and why. During the course of our conversation, he asked me if Matthew snored. Snored?? YES, he snores. I had been complaining since day one that he snored like an old man.
He had what I would describe as chronic congestion and in fact, he had been on both reflux medicine and allergy medicine to try to solve this but nothing ever worked. I ended up recording Matthew breathing that night and emailed it to Dr. Gault, who then suspected that he could have sleep apnea.
We soon visited the pediatric sleep lab where Matthew was hooked up to various wires and electrodes and monitored overnight.
The results were shocking. I am pretty sure that even Dr. Gault was surprised at the severity of it.
He was diagnosed with severe obstructive sleep apnea. What does that mean? Basically, Matthew hadn’t had a good night’s sleep in his whole life. Why? He had abnormally large tonsils and adenoids that obstructed his airway while he was sleeping. He would then wake himself up in order to breathe. Because of the remarkable sleep disruption, his body was not secreting the growth hormones that he needed in order to, well, grow.
Within weeks, we scheduled Matthew for surgery and he had his tonsils and adenoids removed on
April 27, 2010. By the end of May, he was walking. And he finally called me “mom.” We began to see cognitive improvements, too. Little things that let me know that he understands the world around him.
Like when the front door is locked, he knows to turn the deadbolt to open it (thankfully, he’s not quite strong enough to do so). This September, he started preschool and his vocabulary has expanded rapidly.
For the first time, I am able to breathe a sigh of relief. Could his tonsils and adenoids really cause all of these problems? We don’t know for sure. He could have a congenital condition that caused his low muscle tone and contributed to the sleep apnea. But, I will say, looking back, that we should have been referred to Dr. Gault months before I contact him (on my own). There were obvious signs and symptoms that were missed.
Do I blame his doctors? No, not really. Is it frustrating? Absolutely. I feel as though we missed valuable developmental time, but I am confident that Matthew will catch up.
I have learned many things over the last couple of years. I have learned that doctors are human. I have learned to believe in the power of prayer. I have learned to trust my gut instinct. I have learned to never underestimate the value of a good night’s sleep. And, like Neely’s mom, I have learned that you must be an advocate for your child.
He took the time to listen to me and he was able to complete the puzzle.
Undiagnosed sleep apnea can lead to serious health conditions such as a stroke or cardiac conditions and, as I have learned, symptoms of sleep apnea are often missed.
Afraid of the Dark? Just Turn on the Lights.
Each time Neely has had a seizure, she temporarily loses her sight. Temporarily means about 45 minutes. Which is a very long time for a 3 year old that doesn’t understand what is happening to her. And now, she is very afraid of the dark!
She won’t go into a room that is completely dark without someone there to immediately turn on the light. She can’t sleep in a dark room and is terrified if she wakes up during the night to find the lights off. A fear that is completely legitimate given her experiences with temporary blindness.
Our response to her fear is simple. (more…)
Electronic Medical Administration Saves Lives: Scan Me Please!
I had the opportunity to meet someone who has dedicated his life’s work to eliminating mistakes made during the process of administering medication in hospitals. He got my attention the second he said, “I won’t stop until….” There is no greater indicator of passion than a sentence that starts with those 4 words. And I knew immediately that we were kindred spirits.
This is how it happens.
I check my email ~ sorting through the barrage of school announcements, Lillian Vernon sales, and Mom e-newsletters, until I come to a subject line that reads, “Contact through Neely’s Miracle from <name>.” At that moment my heart starts to race and my fingers anxiously dial or email whatever contact info has been left by a visitor to Neely’s site.
It’s hard to explain the feelings that I have in those moments.
- Sorrow that there is a family in the midst of a tragedy.
- Fear that I will not be able to help them find what they need.
- Excitement that the website is doing what we intended it to do.
- Anxiousness about meeting the person on the other side of that contact form.
- Relief at the prospect of being able to help someone.
It’s enough to either make you want to check your email every 5 minutes or not at all….I usually check 3 or 4 times each day. Is it odd that after so many of those emails, I still feel the same way I did when I opened the first one. And yesterday was no exception.
This time it was someone in Kentucky who was searching for help. Help in the form of education, resources that they could turn to for information on an neuroimmunologic disease diagnosis that was just received, and hope. So that is exactly what I tried to give them. Those phone calls don’t get any easier ~ I guess it was a mistake for me to think they would. But the number of resources and contact information continues to grow, as every phone call teaches me something that I might be able to use to help empower the next family.
I am a planner. And Neely’sMiracle.com has taken us down a path that I could not have imagined or planned. So this planner is having to learn to take it day by day, and thoughtfully decide our next steps based on whatever the day brings. That is a difficult thing to do, but we’re getting better.
We believe in Miracles! And with the Children’s Miracle Network Radiothon this week, it has given us an opportunity to stop and think about the possibilities. These are some of my favorite miracle quotes – What are yours?
Wow! The Radiothon for the Children’s Miracle Network is going to start this week-end. We have been so excited for this time to come and can’t wait to join in the fun.
All of the Miracle Stories have been posted on the Radiothon Site (Including Neely’s story!) Just click on the Video and Audio Sections to find the story. Be sure to check it out. It’s a little embarrassing to watch yourself on camera, so I only watched it once. But I hope you will watch it and share it with your friends and families.
There are so many amazing families participating in the Radiothon this year. While the medical conditions and the children vary dramatically, the message is the same for all of us. The Greenville Children’s Hospital saves lives and your support makes that possible.
Tune in to New Rock 93.3, B93.7, Magic 98.9, Rock 101, or WORD 106.3 Sept. 15-17 for the 2010 Children’s Hospital Radiothon. You’ll hear on-air personalities from these radio stations interview members of the community and the Miracle Families about their experiences with Children’s Hospital, and you’ll have the opportunity to make sure miracles continue through a gift to Children’s Miracle Network.
Few People say it as well as Elizabeth Cohen, MPH.
I came across this great article by Elizabeth and couldn’t wait to share it. (Plus, I have a sweet spot for any story that begins with a recap of a Seinfeld episode.) There are lots of Dr.Rights’ out there, and if you need help finding yours – this could be a great place to start looking.
When Neely was sent to the PICU over a year ago the weight of what we were facing seemed insurmountable. I remember that feeling of being overwhelmed where nothing seemed to be within our control. I learned that when there is no clear direction – you just take the first step.
Its the hardest step to take, the next one is easier. And similar “first steps” have been taken (as a result of Neely’s Story) many times since then.
Steps that connect families.
Steps that share stories.
Steps that save lives.
Steps that empower patients.
And Steps that lead to change for good.
This week I saw someone else take a difficult, but important first step toward change for good. We read it and hear it all the time….But it really is the little things in life that make the most difference. (I like to think of them as little steps.) I was reading a book last week (Ok, I confess, It was yet another business book that my sister tells me I’m boring for reading.) Anyway this book had one line that said “Remember, It’s about People. Living, breathing human beings with hopes and dreams, pet peeves, and a whole bunch of emotional baggage.” So forgive me for being a little melodramatic when I say – to me that statement went a lot deeper than just talking about how to create awareness and reach people. For me, that statement means if everyone is willing to look in the mirror and truly assess the “part” they are playing, acknowledge whether they are part of the problem or part of the solution, and put all arrogance aside to work toward change for good…then we can make a real difference.
We can learn from each other.
We can solve problems.
We can Empower Patients.
And we can save lives.
Over the last year we have really learned to appreciate the little things in life. Less is truly More in our book. One of the things that Ava and Neely look most forward too is our Sunday Night Girl Time.
Usually that means we get into our pajamas, choose our favorite color nail polish and make beautiful feet! Neely calls it the Foot Spa. But this week-end we decided to treat ourselves at the local mani-pedi place and had an absolute blast. (Last week was an especially tough week for us…for a lot of reasons. So it was great to create a little escape.)
The have little pink pedicure chairs for children complete with butterfly wings and personal DVD players. I don’t think Neely stopped smiling the entire time. Never underestimate the power of the little things. It’s amazing what a little nail polish and cute flip flops can do to improve your spirits.
We have another exciting breakthrough in our efforts to tell Neely’s Story!
This week over 1000 Newsletters are being mailed to people who are literally all over the world! ScanSource Inc, my employer, is a Specialty Technology Distributor that serves markets throughout North America, Europe, and Latin America and has employees based in all of those areas.
You guys have heard me reference ScanSource before and I’d be remiss if I didn’t say it again – It is a phenomenal place to work! One way that ScanSource helps keep employees in touch is by distributing a quarterly newsletter that covers topics like employee news, Charity Foundation updates, and Health Tips. For the current newsletter, I was able to include an article about the importance of knowing your doctor and being your own best health care advocate.
I couldn’t be more excited and honored to be able to contribute to this issue. Last night, as I was writing about the experience in my journal, I could help but smile and feel that familiar sense relief that always comes after telling Neely’s Story. That is 1200 families that may now be a little more prepared to fight for exceptional health care and doctors who listen.
Who knows…maybe one day that knowledge will help them to save a life. I pray that it does.
Every time I meet someone new or join a discussion with a parent about their children. The question starts burning deep in my chest. It doesn’t matter how hard I try – I can’t think about anything else until I’ve asked who they trust with their child’s care.
I have always been a very private person, so in the beginning I felt like I was being intrusive – prying into their personal life. Now I feel like I’m arming them with the knowledge they may need one day to save the life of their child. The question is always received warmly – and followed by a question of their own. Usually something like, “Why? Do you know something I should know?”
There have been hundreds of conversation like that (between me and another parent) over the last year. Every conversation begins with me telling our story and ends with me sharing this website with them. (And there are usually a few hugs, tears, and thank yous in between)
The most ironic conversations have happened when I ask that infamous question, “Who is your pediatrician?” and they respond with Christie Pediatric Group. That has happened more than a few times. And in that scenario, our story really hits home.
I’ve been flooded with people who contact me to share similar stories about how being their own best health care advocate saved a life. It’s those stories that inspire me to keep writing. This world is full of problems that we may never be able to solve – war, poverty, crime, disease, the list goes on and on…..But educating people by sharing our stories is something we can do.
We are just one family – taking one step at a time – trying to use our experience to help other families like us. Please help us! Post a link to this post in your Facebook page or email it to your friends and families. Creating awareness is the first step.
September will bring a significant milestone for Neely. On September 29 she will have been seizure free for one year! And with that anniversary brings all sorts of excitement and worry.
I don’t think it is possible to ignore the nostalgia that anniversaries bring. You can’t help but remember the cause of the anniversary and reflect on how far you have come. Neely has really come a long way. Aside from her medication (and its manageable side-effects) you would never recognize her as the same little girl she was just one year ago.
She has regained her balance and an appropropriate attention span. Her speech and sight (which were the last things to come back) are all good. She is getting her self confidence back and doesn’t seem nearly as anxious when we have to go to the doctor for check-ups. She really is quite a little miracle.
On our next check up with her Neurologist there are lots of possibilities. We may be repeating an EEG and/or an MRI. She will also be evaluated to make sure she is still performing at or above her age level in all areas. And we may be able to start weening her off of the anti-seizure medicine. I think that is both a blessing and a curse.
Recovery is a difficult process (to say the least) Something I never expected to feel was sadness and worry for moving forward. But it is hard to let go of the things that you have clung to. I felt it for the first time when we left the PICU to go to a regular room in the hospital. Don’t get me wrong – I was thrilled beyond belief that Neely was well enough to make the move, but also terrified to leave that level of care. I felt it again when we moved from a regular hospital room to Roger C Peace, when they begin to ween her off of steroids, and when they released us from her first therapy.
You don’t expect it to be so hard to move forward. But it is.
I’m anxious for the day that Neely is no longer dependant on medicine. I’m also terrified to take that medicine out of her system. Knowing that her body is going to be completely dependant on itself. It’s a strange feeling. But I know that fear and worry is the [rice you pay to move to the next step of recovery. And it’s worth it.
We’ve all been there – Standing in the exam room, listening to the doctor explain the probable causes of your symptoms and offering his/her opinion on what your next steps should be. “Opinion” is the key word there. However educated that opinion may be, it is still just one theory. That is why is so important for you to trust the person who is offering that opinion to you. Choose your doctor or pediatrician carefully and choose your course of treatment even more carefully. (Check here to see how I find/evaluate doctors)
With that being said – Here are the top 10 things that you should never be afraid to say to your doctor.
1.) I want a second opinion.
2.) I don’t feel like you are listening to me. I know “Me” better than “you” do and this is not normal for “me”.
3.) I want a <fill in the blank with your medical test here.> (more…)
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.”
“Neely, Did you hear me?”
“Neely, I’m not playing…Look at me.”
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.
Today is a big day!
Ava’s first day of 1st Grade and Neely’s first day at Poppy’s Preschool!
We decided to keep Neely out of a traditional preschool this year. We struggled with that decision – because we really wanted her to have the same wonderful preschool experience that Ava did. But it seemed like an unnecessary risk to take. No matter how many precautions – schools are breeding grounds for GERMS!
Neely’s immune system is no longer suppressed, and she has been off of steroids for almost a year. But Jamie and I decided for her well being and our peace of mind that we would take every opportunity to avoid the School-Bugs for as long as we can.
So Poppy’s Pre-school was established! (Poppy is Ava and Neely’s Grandfather…My Dad.)
Armed with flash cards, alphabet toys, counting bears, and more…Poppy decided to “home-school” Neely for 3K. I’m not sure which of them is more excited. He says they won’t start Algebra until after Christmas. Stay tuned for progress updates….
Needless to say, both girls jumped out of bed this morning ready for their first day of school and sporting their matching monogrammed lunch boxes. (I really can’t help myself when it comes to matching – I’m working on it.)
You hear it all the time. Non-Profit Organizations say it, Schools say it, Psychologists say it, Politicians say it – (I’m really annoyed by politicians though.)
“You have to break the cycle.”
It’s so true. But it’s hard to know exactly what you can do to help “break the cycle” though. Cycles of poverty, ignorance, hunger, abuse….unfortunately, there is no shortage of things that aren’t getting done.
I am inspired by reading stories about people who do little things that turn into big things. Because it’s those big things that start to “break the cycle.” And if it weren’t for the little things – the big things would never happen.
This week, I didn’t have to look far for that inspiration. In fact – this particular source of inspiration actually married my little sister. (But that wasn’t the little thing I’m talking about here.) My brother-in-law, Jon Potter, was awarded Big Brother of the Year this week through the BigBrother BigSister Organization.
Potter (that’s what we call him) has been a Big Brother for 6 years and he takes it seriously. He’s had 2 little brothers and his current little Brother, Darius Williams, is 13 years old. Potter is a busy guy – he works full time as an Engineer, travels a lot, maintains a meticulous yard, and keeps my little sister happy (which can’t be easy but he still finds time to do little things that make a big impact on Darius. It’s easy to see that relationships like Potter’s and Darius are more about quality than quantity.
At the Big Brother Banquet, Potter’s previous little brother, Stephen, was given a chance to speak in front of the audience. For a child that could barely read and write a year ago….writing a speech, articulating his feelings, and then speaking in front of an audience is a really big deal! He ended his speech by saying, “I can only hope that I can be half the man he (Potter) is when I grow up.”
Darius also took a quick turn at the microphone. And when he talked about what it feels like when Potter goes to his football games to watch him play he said, “It makes me wanna play better instead of slacking, I try to give 110 percent instead of 100 percent.”
And that my friends – is what it sounds like when “the cycle breaks.”
For a person who always has a plan, finding myself in a constant state of “new territory” with no clear direction in sight can be very frustrating. So I listen. And I wait. I watch as doors close and windows open.
Last week there seemed to be no open windows. It was one of those weeks when I felt completely outnumbered. Outnumbered by stories of patients who’ve suffered because they didn’t have the knowledge and support to fight for the answers and the treatment they needed. Outnumbered by doctors that shouldn’t be doctors. Outnumbered by hospitals and doctors offices that don’t have systems in place to keep patients from getting lost in the shuffle. And I couldn’t find an open window.
On Friday, I think I found one. I received two emails from two different friends within 10 minutes of each other. Each one said “I saw this article and it reminded me of Neely’s story.” They both included the same link to an article that was posted on CNN. (I’ll take that as an open window.)
The article was written by Elizabeth Cohen the Senior Medical Correspondent at CNN. (I think she was already a writer for CNN when she experienced something similar to what we experienced with our former pediatrician, Christie Pediatric Group.) She began writing a column that was focused on Empowering Patients. Which is a really great way to say what I feel like I’ve been trying to do. Her column seems to have been a great success and she has recently published a book called the Empowered Patient that will be coming out this August. I can’t wait to read it.
I’m not sure yet where this will lead, but I have no doubt that I need to know Elizabeth Cohen. (If you know her, I’d appreciate the introduction. ) If not….stay tuned. I’ll keep you posted on progress as I reach out to her.
I have this mission. I didn’t ask for it and I’m not sure what then end looks like. (I’m not even sure if there is an end.) I’m grateful that 10+ years in marketing have taught me how to tell a story, create awareness, and reach people, but there are lots of days when I am at a true loss for what should be “the right” next step. Because when you peel back the layers, I am still a hurt Mom who is angry that my child suffered and I want to keep that from happening to another family. It is difficult to not let that hurt and anger drive my decisions (or my words.) But that’s what I know I have to do.
The point is – the article on CNN introduced me to another Mom (who no doubt is also hurt and angry that her child had to suffer.) I’m certainly not happy for what she went through. But I am happy at the prospect of meeting someone who has traveled the road I’m on. It sure feels a lot better to connect with people who understand where I’ve been and who share the same mission. I can’t wait to meet her – I just have to figure out how.
‘Keeping Yourself Healthy’ is the first item on the list of tips for keeping your family afloat in a crisis. I bet that you skipped right over that one when reading. That’s what parents do. Let me repeat, you cannot afford to lose yourself. The thing that takes a tough situation to a crisis situation is that what you usually do to cope in an emergency isn’t getting the job done. Your regular coping skills aren’t going to work here. When your situation takes you to the next level, your coping skills have to adjust with your circumstances.
The tips for maintaining the mental and emotional health of your family are very similar to the ones for maintaining your own mental health. Remember, you owe it to yourself and your family to stay spiritually, emotionally, and physically healthy. The way that you care for your family is a reflection of the way that you care for yourself.
1. Take Action.
A failure to act almost always ends in despair. Hopelessness comes from allowing your circumstances to control you. You maintain a sense of control when you take action. You found this blog post through a website that’s primary function serves to empower and encourage you to select a healthcare professional whom you can trust. You have come so far. Stay involved by asking your doctors/nurses questions and staying informed. Take notes on your discussions. Make logs of visitors so you can send notes later. These tasks occupy your mind and allow you a much needed rest from your emotions.
2. Take Care of your Vehicle.
I’m not talking about your car. Take care of your body, physically. Your body needs food, water, rest, and it needs to move. Your body needs fuel to continue to function. Your brain needs fuel so that you can continue to think clearly and make good choices for yourself and your family. Your body also needs to move. You don’t need a gym and an elliptical to move and stretch your body. Studies have shown time and time again that stretching your muscles can have a profound impact on relieving stress in the body, reducing tension, and clearing your mind.
3. Let People In.
Accept visitors on your time. It is important to stay in contact with your support network of people, but you also need time for yourself AND rest! Suggest times that are appropriate for visitors while encouraging them to visit you and your loved one when you return home too! When you don’t feel like you can stand on your own two feet, there are people in your support system and around it that are willing to help. Ask them for their prayers. It is a tiny request that yields enormous results.
4. Re-Focus and De-compress
Take no less than 1 hour for yourself each day. It is not likely that you will get this chunk of time all at once. It is more likely that you will get a few minutes here and there through the day, so use these moments wisely for quiet activities. In a recent post titled ‘Starbucks Was At the Hospital With Us’, Christy wrote, “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. So true. This is the best time to journal, make notes, pray, stretch, clear your mind, and refocus.
5. Try to keep a routine.
Waking up in the morning and looking at an empty day filled with uncertainty and worry is not a place to be. Make ‘appointments’ for yourself and your sick child. I remember when Neely was in the hospital, Christy would some days say things like “Neely, after we eat lunch, we are going to go for a walk to see the fish.” That ‘appointment’ became an anchor and something to look forward too. It removed them from the confines of a small hospital room to see and interact with others.
The way that you care for your family is a reflection of the way that you care for yourself. Taking time to make sure that you are emotionally, spiritually, and physically well enough to face the day is not a selfish act. In fact, it is the most unselfish thing you can do in these times of crisis.