Tag Archives: ADEM

Why I Spend More for Less Ice Cream

I’ve been accused of being from out of town. After all, who else would have an app for all the local grocery store chains and be able to shop savvy in the middle of the only incorporated town in all of Marion County, Texas? Yes, I’m that kind of person. I like to save when I can.

Am I an extreme coupon clipper? No! I did research on that and found out that part of the way they get their coupons is by getting online, finding coupons that are being used for a particular market for introduction and evaluation and changing their zip code to match so they can download that coupon. In other words: that $2 off coupon is only good in the Northeast where they are doing some market research, but if you change you zip code to a northeast zip code, you can get one of the coupons. My ethics won’t allow me to do such things. So, I save where I can and budget and do my best. I play the balancing game between how much my time is worth, how much gas would be spent going to different stores compared to the amount of savings I would get. It’s what you have to do when you’re on a budget!

So when in the world do I spend more for less ice cream? The answer is simple. I love my daughter.

Greta is going through that puberty phase where some girls get rail thin and others get pudgy and round. She’s going for pudgy and round. She’s also emotional, thanks to ADEM, so she gets attached to foods she loves and is sometimes a stress eater. Let’s see, her brother left for college and we are relocating to Mississippi. Nope, no stress in this household. On top of it all, Greta is dealing with habits and appetite binges she developed when on a huge dose of steroids to save her life during ADEM. She’s got a lot of things going against her right now. She needs all the help she can get. So I buy more expensive ice cream.

I’m not talking about buying the generic store brand versus those that claim to be the best ice cream in the country. I’m talking about spending more to buy those prepackaged ice cream cups. Greta loves ice cream! It’s a love language for her and it helps to calm her down in the middle of one of her ADEM mood swings. But I can get much more ice cream for my money if I just buy a half gallon of it and everyone scoops their own. That’s the problem. Greta scoops out way too much. Actually, we all do!

So I’ve come to the point where spending more money, to get the smaller and already packaged cups of ice cream is the best thing I can do to help Greta learn portion sizes with the treat she loves so much and gives her so much comfort. If you’ve ever been through a life threatening situation that leaves you emotionally scarred, you’ll understand how important it is to have a comfort item in your life. So yes, that’s why this budgeting and saving mom spends more for less ice cream. I look at the heart of the matter – a little girl going through so much at one time and I decided she’s more than worth it!

2 Comments

Filed under ADEM, Family, Parenting

What Tools Should You Have in Your Toolbox?

If you hang around neuro-psychologists long enough, you just might pick up a couple of their phrases. Going through the evaluations, various testings including follow-up MRI’s and so forth with Greta’s Acute Disseminated Encephalomyelitis (ADEM), we’ve spent some time with a great neuro-psychologist. One of her phrases that we love -Tools for your Toolbox!

Basically, this doctor, who is a favorite among all the kids and parents because she is just so awesome, says her goal is to make sure Greta has enough tools in her toolbox to handle dealing with ADEM in day to day life. Now nearly three years after that terrifying ordeal of seeing my little girl hospitalized and hooked up to all kinds of things, I realize that tools in the toolbox can apply to any of us. I’ve also seen that we’re a lot happier when we embrace this.

I’m getting ready to send my firstborn off to college. He has his own issues that he deals with, like being an intense introvert and being addicted to his routines. Seeing him being forced by circumstances to change his routine is like watching ants that have lost the line. So yeah, I’m a little nervous for him, but I’ve taken on Dr. Harder’s mantra and I’m doing everything I can to make sure that Michael has the tools he needs in his toolbox to deal with life as a college student hundreds of miles from home.

So what tools should you have in your toolbox? That’s easy, the ones that help you cope and deal with life – in addition they should be legal, moral and ethical. That usually helps. While there will be similarities, there will also be tools that will be different for each person. Greta, being very literal now and decreased math skills due to ADEM, needs tools to help her remember to ask people to help her when she doesn’t understand something. She needs to tool of asking others to slow down and help her until she gets that joke, because she’s so literal.

Michael, the extreme introvert, knows he would rather do just about anything before talking on the phone to anyone. So a tool in his toolbox is going to be a good friend willing to make a phone call when he can’t.

What tools should be in your toolbox? Find those things that help you cope with life and deal with the day to day stresses that living on planet Earth serves up on a regular basis. The amazing thing is, you’ll usually find tools for your toolbox in your family, church, community and friends.

 

Comments Off on What Tools Should You Have in Your Toolbox?

Filed under ADEM, Community, Family, Parenting

What She Found in the Closet

Personality. My daughter has it. In fact, she has so much personality she has little time for things like cleaning her room on her own. Personality people love group activities and let’s face it: cleaning your own room isn’t a group activity. Greta loves to help in groups and will be the first to volunteer and she’s great at cheering on the team. That’s why we love personality people.

But her room is still a mess and the boys don’t wan to make it a group activity that Greta will love and help their little sister out. So we bribe them. Matthew is paid to work in the room for a while. Greta is thrilled to have company on doing a chore and the room gets cleaned. We gloss over the arguments and chalk them up to simple sibling rivalry.

The next morning, Greta came out with a huge smile and one of her recently rediscovered treasures, found deep in the recesses of her previously hideous closet. It was an envelope full of homemade cards from the kids at her school – from when she was in the hospital. She came out waving the envelope and shouting to the world:

See mommy, people do love and care about me.

Of course I responded that I never had any doubt and smiled, and tried not to cry, as Greta read card after homemade card from different schoolmates expressing that she get well soon and how much they loved and missed her. It’s been two years since our lives changed and ADEM came to our home, but those words of love and encouragement still found loving reception in Greta’s heart, and mine.

I told my class at church – I wish everyone could go clean their closet and find an envelope full of the love and encouragement folks have given them when they went through a difficult time – and remember that people still love and care about them. Go ahead, right now. Go clean out the closet of your memories. Don’t dwell on the obstacles and hurts. Remember the love and support of those who stood by you and perhaps even carried you through that time. Like Greta, hold those precious memories high and say to yourself that it’s true! People still love and care about me!

Comments Off on What She Found in the Closet

Filed under ADEM, Community, Family, Parenting

Easy to Forget

I’ve written before about how grateful I am for finding someone or a group of someones who can understand what you are going through – community. It hasn’t changed. Recently I put a question to the ADEM group on “Ben’s Friends,” a website dedicated to connecting people with rare diseases, including ADEM, about helping friends understand.

The response from a man in his 50’s was just what I needed to hear. He’s been through what my little Greta is going through, but as an adult, he can express his needs a little more reasonably and in the typical “adult” manner than Greta can right now. His advice helped me a lot. His kind words to Greta were that she had nothing to be embarrassed about. All she had to do was ask people to slow down a little or go over something again, it’s not a crime to ask.

I thanked him and told him that even Karl and I can forget at times that Greta needs a little extra help here and there, because everything looks so normal on the outside. He wrote back that his wife has the same ordeal. She’s so grateful to have her husband back after he had been through and had to relearn to do that sometimes it’s easy to forget that he still struggles sometimes.

When everything looks “normal” on the outside. It’s easy to forget. It’s easy to forget that there are still things on the inside that trouble us and make us need to ask for a little bit of extra help. The problem is, we get tunnel vision. We see “normal” so much that we aren’t always prepared for the after effects of ADEM to rear their ugly head and we have to slow the train down and adjust. It catches us off guard. Because we are human and it is easy to forget.

Praying that when I’m jarred back to the reality of ADEM and the fact that life will never be “normal” again; that it doesn’t take me quite so long to adjust each time. Perhaps there are others in my community, my circle of friends that also need me to pay attention to when they need a little extra help. There are many out there that need us to be prepared for anything – not easy to forget.

Comments Off on Easy to Forget

Filed under ADEM, Community

Short Circuit

Like it or not, once you start messing around with all that amazing stuff inside of your skull, you are going to have some consequences. With our daughter, we are glad the lesions in her brain are no longer growing, that it is the one time ADEM episode, but the fact of the matter is there are still after effects of the lesions in her brain.

Greta is one of the many sufferers of a disease or disorder that no one can easily see on the outside. There are many issues, some chronic, some acute, but all leave a person feeling isolated to some extent. They look “normal” to most, but those who know them best know the more of their daily struggles.

Most kids that suffer from brain injuries/lesions, try so hard to hold it together at school. They let it all out at home, full force. Lucky us. At least Greta gets to experience a mostly normal day at school with friends. At home, however, when her will and our wills clash – it can be a nasty battle. The last one left Karl and I on the wounded list for hours. Greta recovered in a matter of minutes – cheerful as ever.

After debriefing over the latest explosion of anger and emotions from our daughter, we discovered something. She has a short circuit. Perseveration – latching on to something and not letting go – is one of her issues. If you try to change Greta’s mind on something she is latched on to – let the battle begin! What we learned is we try to go to step 1 of reasoning out a solution agreeable to all. Greta immediately launches a nuclear strike and takes no prisoners. She no longer has the ability to follow reasonable conflict resolution patterns in areas where she is experiencing perseveration.

Our task now: figure out how to help Greta develop a new circuit so the battle doesn’t start off immediately with a missile crisis – will she or won’t she? On this journey of ADEM effects, we learn more and more about the amazing brain and how our bodies cope. My prayer is that we learn enough to make a difference in Greta’s post ADEM life and the lives of others that suffer due to brain injuries and illnesses.

Comments Off on Short Circuit

Filed under ADEM, Family, Health & Wellness, Parenting

Cheer!!

Being at The Center for Courageous Kids is a life changing experience. Going to a camp designed for kids with medical issues is freeing.
There is so much to write – too much actually. But when the little girl paralyzed from the shoulders down was put on a horse and got to ride, we all cheered for her!
Trained walkers held her back, head and trunk in place as they walked beside her on her horse.
So glad someone had the vision to create a camp for children with special needs!!

Comments Off on Cheer!!

Filed under ADEM

Video Tears & Community

I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.

Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.

There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.

What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.

We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.

2 Comments

Filed under ADEM, Community

What If?

My sweet little one is 10 this weekend. In planning her birthday party, she decided for a large all out bash – where both boys and girls would be welcome. Greta’s love language is fun times with friends. So naturally she would be thrilled to see all of her friends having a great time and everyone smiling like crazy!

One of the adjustments we have had after ADEM is emotional outbursts. Greta gets angrily easy and it takes about half an hour usually for her to settle down, unless we have an awesome, bright & shiny, fun type distraction for her. Her reaction when we try to gently guide/scold/discipline her is as if we were banishing her from the house and family. The psychologist said this isn’t a surprising reaction after all she has been through with the brain lesions.

What broke my heart this week was her sincere question: what if I get angry at my party? She knows she struggles with anger issues, as do a lot of kids and adults suffering with ADEM. She knows it could mess things up and her desire to have fun at her party is so great, but it is almost as if she recognized that this is something that is sometimes beyond her control.

What if? We may not have been through ADEM, but most of us have gone through bad choices or consequences from others close to us and their bad choices. When we are all set to have a good time and enjoy life, we wonder – what if that springs up again and ruins everything? What if these things that I don’t always have control over come back and really get in the way?

I appreciate the way Greta knew that getting angry isn’t who she wants to be and sometimes it just can’t be controlled. Bad choices isn’t who I want to be either. I think I’ll spend some time talking to God about it and asking Him to help me make better choices, so I don’t have to ask – what if. I’m also going to spend some time praying for His blessings on Greta, so she can have a great party and not let ADEM outbursts get in the way.

Comments Off on What If?

Filed under ADEM, Parenting, Spirituality

The Four Friends

Greta had her one year follow up regarding her ADEM. It seems we learn more about this disease each time we see her specialists – actually we learn more about how it is affecting Greta. Her MRI looked great, no new lesions and shrinkage of most of the original ones. There is one spot on her brain that isn’t going away. The doctors said that since it is one year out now, most likely she will have that spot for the rest of her life. This will make things interesting for her. If she ever has an MRI of the brain in the future for any reason besides the ADEM, she’ll have to let them know ahead of time that she has a spot on her brain, from a childhood illness.

We learned that there are four friends that hang out together after brain injury/trauma/lesions. They are perseveration, decreased math skills, memory oddities and being very literal. And yes, Greta is textbook with these issues. She latches on to things and won’t let go, like a honey badger. She’s been taken down a grade level in math and we never know when her memory is going to take a brief hiatus. What about being literal? Don’t even think about using a figure of speech unless you are prepared to spend 10 minutes explaining it to Greta.

The literal issue is probably one of the biggest. Most everyone has run across someone who has no concept of boundaries or sharing/taking turns. So the latching on to things of perseveration won’t hinder her throughout life. Many people hate math. Greta will have many sympathizers. Who knows what is memory and what is not? Half of our lives are spent connected to some sort of electronic device to prompt us of important things anyway. But being very literal – it could lead to all kinds of trouble.

I remember saying something like, “It’s got your name written all over it Greta.” She did indeed look for her name and then got very angry that I had lied to her because obviously her name wasn’t on it. She had no concept of the figure of speech. This is one of many incidents she has gone through. So I will start praying now that there will always be at least one person in the group (Greta loves being with friends) that will help her get past this literal hurdle. For now, it is her family. I pray she finds friends to help her overcome these setbacks in college and eventually the workplace.

Perhaps this is why the Bible tells us to confess our faults to one another. It doesn’t say sins. It says faults. If we open up and share with each other our struggles, the hope is that your friends will pick up the slack where you need it most. But this requires vulnerability. This requires risk. What if I share my struggle with someone and they just laugh at me? What if they use it against me and keep me from getting that promotion I was set for? We can start by being a good example. You probably already know an issue that one of your friends struggles with. Go out of your way to be a true friend and pick up some slack. Be intentional about helping your friends and family. It matters.

Suppose Gr

Comments Off on The Four Friends

Filed under ADEM, Community, Healthy Lifestyle

Acceptance

Greta's ADEM

Greta’s ADEM

One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.

Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.

So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.

Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!

Comments Off on Acceptance

Filed under ADEM, Community, Family, Parenting

A State of Thanksgiving

The support was amazing and almost as overwhelming as the journey we were going through. Karl and I cried and each took turns pretending we were strong enough to tell our little girl that she had a mass on her brain. In the end, the diagnosis was Acute Disseminated Encephalomyelitis or ADEM. It took two MRI’s a spinal tap, many blood draws and physical examinations to get to the diagnosis, but once there, effective treatment began.

When it was all said and done, there were many things we learned. Did you know that ADEM is rare in children and that it quickly becomes life threatening as it is often misdiagnosed in smaller, untrained hospitals? The time to get effective treatment is critical and a misdiagnosis can leave behind a child with many long term recovery issues because the treatment was delayed. Greta’s first major symptom of vision loss in one eye was immediately met by her physician with a CT scan. Quick action for which we are thankful.

When the scan showed the mass on her brain, our little Greta was sent straight to Dallas Children’s Medical Center. In the end, we learned that this facility is one of two hospitals in the country with active programs treating and studying the rare demyelinating diseases. We are thankful.

I joined the Transverse Myelitis Association (TMA), a group that serves as support, awareness and education for patients and families of the lesser known demyelinating diseases: ADEM, Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Optical Neuritis. By staying connected to this organization, I became aware of other families in their struggles with these life changing diseases, especially ADEM. Many of the children were misdiagnosed. Many were victims of delayed treatment. Most of them are in a great struggle to regain a sense of normalcy in their lives due to the devastation of the disease. And Greta? She rides her bike, goes to school and loves a grand adventure of trying something new with friends. We are thankful.

A glimpse of a show from the current season of Master Chef shows a blind competitor. She wasn’t always blind. As a young person, she got NMO and is now unable to see. Yet despite this great impediment, she pushes on to do what she loves, cooking. I look at Greta and she has regained her vision and carries on normally as a super reader. We are thankful.

In my latest communication with the TMA, I got connected to a forum of people dealing with ADEM, some of the patients children. I read their stories and realized once again how many miracles took place in Greta’s life and in her experience, still ongoing, with ADEM. She is still being monitored and she is still undergoing evaluation to see the extent of any possible brain damage due to the lesion in her brain, but she functions normally.

I have been thankful for Greta’s treatment and recovery. But the more I stay connected to others dealing with the demyelinating diseases, the more thankful I am. I find it very easy to be in a state of thanksgiving when I look at my active and full of life daughter.

When I was a kid and I read Bible verses about always being thankful, I couldn’t imagine. I just couldn’t seem to wrap my mind around why anyone would want to be thankful more than once for good things that happened. I was a kid who just wanted to say thank you and run off to my next adventure. Going through this journey with Greta, I see things differently now.

Perhaps, just maybe, the reason we aren’t thankful, is we aren’t aware of how band things really were or how bad they could have been. Did your house burn down and you lost all of your earthly belongings? Perhaps by connecting with others who experienced this loss, you may realize that you were blessed. They lost their belongings and members of the family. Did your spouse lose their job and the unemployment sent you into a financial tailspin? By reaching out to others in this situation, you may find that they lost hope and their family split up.

If you have been through a trial and have come out on the other side, by reaching out to others you can lend support and help. You can also learn to be in a state of thanksgiving.

Comments Off on A State of Thanksgiving

Filed under ADEM, Community, Family