rambling

I'll be really honest with you right now: I have no idea what direction this is going or if it will even end up being coherent. There will probably be typos as autocorrect comes up with weird things that I don't catch because my brain is moving faster than my fingers and I just have to get this out. Whatever "this" ends up being. It will probably be oddly formatted as I am writing it on my phone and I'm really not used to the blogger app. But here I go.

For a brief, beautiful two months, Daniel was seizure free. This was the longest stretch since fall of 2018 when we first learned about Lennox Gastaut syndrome. We appreciated every day, but didn't get to excited, because we know how things go.

Last week, we started to see seizures again. Small and subtle, likely unnoticeable to someone who doesn't know what they're looking for, but we know exactly what we're looking for. Even though the movement was little more than a twitch, his eyes gave it away. Calls were made to all the doctors, records were between the hospitals, and the meds are in the process of being adjusted. So here we are again. Hoping that this simple tweak makes the difference. Hoping that, maybe, he gained enough weight in the last two months that he just outgrew the dose and needs more medicine. Knowing that's not likely, but hoping anyway, because we don't know what the next step is going to be if this doesn't work. Again.

Here's another thing about Daniel. He has a weakish immune system. I won't say he's high risk or immunocompromised. He was two years ago when he was on ACTH and steroids, but now he's not, and I don't want to downplay the seriousness of those who are. But he does tend to get sick more often than other children, and it is more serious when he does get sick. This past winter he was hospitalized for pneumonia and bronchiolitis. Watching him struggle to breathe until the nurse injected him with that steroid to open up his airways was one of the scariest things I've seen. And he has taken us on some crazy rides. So when it comes to covid-19? Well, I hope you'll understand why my family is taking all the precautions, and why I'm practically begging you to do the same. If we find out 6 months from now that wearing a mask in public and inducing social distancing made absolutely no difference whatsoever and didn't even prevent the spread by .001%, I will still have no regrets about doing both. Because it was a precaution that was minorly inconvenient that some people thought just might help. This is the time to be overly cautious, because people like Daniel might need it. Is he likely to catch covid-19? Probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.

Another thing about uncontrolled seizures. SUDEP (Sudden Unexpected Death in Epilepsy) is a real thing. Some of the biggest risk factors are early onset of seizures and uncontrolled seizures. I would consider four months of age early onset, wouldn't you? I don't think we're being unreasonable in our thoughts and actions, but I'd be lying if I said that Nate and I weren't concerned. Maybe even freaked out a little. If his seizure movements are so small that the monitor we have in his room doesn't pick them up, how many seizures could we be missing at night? So I'm doing what Danny's parents and Henry's parents wish they would have done: I'm spending my nights on the couch snuggling my baby in hopes that even the most subtle seizure will wake me and we won't lose our baby to SUDEP like they did. Is Daniel likely to die from SUDEP? Statistically, probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.

And through all of this we've been dealing, like many of you, with distance learning and unpredictable Minnesota weather (is it spring? Is it winter? Who even knows anymore?) and increased work hours (because let me tell you, this has NOT made life easier for your pastor. Or their family.) and life as we know it bring turned sideways then upside down and then tilted back the other way. Under normal circumstances we would push to get Daniel admitted to Children's for an overnight EEG so we could track seizure activity during sleep. I'm thinking that's not high on the priority list right now .

So there that is. Somewhat coherent ramblings on covid and SUDEP and the reality of having a baby with uncontrolled epilepsy during a pandemic. I'm not looking for sympathy or pity or a pat on the back. I'm not really sure what I'm looking for if I'm looking for anything at all. Maybe I just needed to get this out because there's someone else out there who needs to read it, too. The spirit is tugging me and I've learned not to say no.

we are in this together

This is something that first struck me several years ago when we had a miscarriage, and now that we have a special needs child, it just keeps coming back.

There is no competition. We're not trying to one-up each other or downplay another's pain. We are there with unconditional support, because we know that's the only way any of us will get through.

We've had some rough days on our journey. When we first heard the words "Lennox-Gastaut" we were scared. One of the defining characteristics of this diagnosis is that it is unpredictable and difficult to control. That's not what you want to hear about your child's health!

The summer before the LGS diagnosis, when we were still celebrating a successful second resolution of D's infantile spasms, I met a mama at camp. This mama is a warrior, and so is her medically complex son. We shared stories of triumph and heartbreak, frustrations with our imperfect health care system, and the challenges and joys of having children with seizure disorders. I won't play up our relationship and say we're best friends, or even that I have any idea what she is going through, but I know that, if I need her, she's got my back, and I hope she knows that I've got hers.

Friends, this is a mama who won't see her son survive childhood. Seizures are just part of a long list of health concerns.

I've since connected with other mamas who are on this difficult road with us. Some of us are hopeful that our children will be able to grow up and have fairly normal lives, even if they are lives with daily medication or a strict diet to follow. Some have made the heartbreaking decision to start hospice care for their babies, and are making the most of the precious time they get to hold them in their arms.

And we are all in this together.

Can I tell you some things I have never heard? From the mamas of miscarried babies or the mamas who are preparing to say goodbye to their babies, all while they watch mine learn how to walk and find his voice and discover the world?

You could have it so much worse.

or

At least he's doing well now.

or

You are actually really lucky.

Because we are in this together. It's not a competition, because if it were, no one would win. We are in this together. From the parents watching their child's brain slowly shrink while she continues to have seizures that doctors can't diagnose or stop, to the single mama who somehow manages to be present and joyful (at least most of the time) and make sure that her daughter has good memories of her brother for the few years they get together.

We are in this together.

We advocate for each other, and for each other's babies, because sometimes it is just too hard to do it ourselves, but it needs to be done. So we step up for each other, knowing that when we are down, someone else will have our back.

Even if my child's diagnosis is "worse" than yours, I've got your back. Just like I know Amber and Lindsay and Kelly have mine, even though their kids diagnoses are "worse" than D's.

Because we are in this together.

a convenient tree hugger: who gives a crap? toilet paper

Who Gives a Crap? Yes, that is actually what it is called. How could I not try it?

I was intrigued: 100% recycled toilet paper? Sounded a little disgusting, to be honest. But they also advertised no plastic packaging, and I'm committed to reducing my plastic waste however possible. I'll try anything once, right? I won't go into too much detail about the product, because you can read all about it on their website. Super quick summary: you can either buy bamboo TP or TP that is made from recycled books and office paper.

I went with the slightly more budget-conscious option: 100% recycled. I was a little nervous, because I don't buy junky toilet paper. It has an important job, so I've always said that I will spend a little more money on stuff that is at least decent, if not awesome. But the description claims that the product is as "soft as unicorn kisses," so I went with it. Let me tell you: this stuff is pretty darn great. I'm not going to lie and claim that it's the softest thing I've ever used, but it's actually up there. I was very pleased.

As an added bonus 50% of the profits (over $1 million so far!) are donated to build toilets in developing countries. As someone who has traveled to developing countries and seen what the toilet situation can be (think of an actual, literal hole in the ground), I can tell you that this is significant.

Now for the down-side. Because there is one, and definitely one I have to consider for my family.

I love the name. It's cute, it's catchy, and it's relevant. It's also very visible. And not necessarily something I want my five and seven year olds seeing all over the house.

Each roll comes wrapped in super-cute paper with fun messages. Normally, I would give them to my daughter and let her practice her origami, or I would flatten them out and donate them to the new Maker Space at the elementary school.

But there's this:

Right smack-dab in the middle. So into the recycling it went. Or the bonfire bin if fall ever decides to come back to Minnesota.

My final call: The name is not necessarily a deal-breaker, at least for me, but it's definitely something to consider. I will absolutely order the toilet paper again, especially if a good deal comes along, and I will take a look at their other products (tissues and paper towels) when I need to replenish my stock of those, too. If you, like me, give a crap, and you are interested in ordering, I hope you'll consider using my referral link! Click here to shop, and you'll get $10 off your order, and I'll get a $10 credit! We both win!

a convenient tree hugger: napkins (but not paper towels)

I made the switch to cloth napkins several years ago, and it was pretty darn easy. I bought several yards of plain gray linen for pennies a yard when Hancock Fabric went out of business (a sad day in my house), I cut it into squares, and I serged the edges. It probably took me an hour to make a whole slew of them. They're nothing fancy, but we use them to wipe our dirty mouths, so they don't need to be.

To be honest with you, we do still have paper napkins, too. Our stash of cloth gets us a few days, but if you think that I always keep up on laundry, well, think again! Sometimes we do resort to paper for a day or two. This is a problem that could easily be solved one of two ways: doing laundry more frequently (not likely) or making more napkins. I'm going to opt for the latter.

And while I'm at it, I might as well make an extra set to give away to one of my lovely readers! Enter below for your chance to win 20 premium ultra deluxe* handmade cloth napkins!

*They're not that fancy. They're fabric with serged edges. But you don't have to throw them away after you use them! I will let you have input in the fabric selection, though. I'd hate to make you a set of red and white checkered napkins and find out that your dining room is blue and green. Or something.

You might be thinking "Yay! Cloth napkins are great! Let's even take it a step farther and add some reusable paper towels to the mix!" I'll be honest, I once thought that myself. I even pinned a couple easy patterns so I could make my own, since I am my mother's daughter! Then I looked at the occasions when I actually use paper towels. They are few and far between. Here are pretty much the only times I use paper towels:

• When cleaning up bodily fluids.
• When wiping out something particularly oily or greasy.
• Other rare occasions when I just want to be done with the thought of the mess forever and not have to deal with it in my laundry.

In these instances, I just want to throw the towel away. I don't want dog-pee soaked rags in with my clothes. Maybe if I went back to cloth diapering, I would consider it, but for now, it goes into the trash. I made the mistake a few times of using a hand towel or other rag to clean up a greasy mess, and no matter how well I thought I rinsed it after, I still ended up with grease stains on the other items in that load of laundry. It's easy enough to get them out with dish soap, but why no avoid that step if I can?

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a convenient tree hugger

Lately I've been aware of just how much waste my family produces, particularly plastic. I know it can be recycled, and it's easy to subscribe to the "out of sight, out of mind" philosophy, but I'm starting to learn that's not good enough. I've read a number of articles that have been pretty sobering. Do a quick search for "What happens to recycled plastic?" and look for some of the newer articles. There have been some developments in the last year that mean big changes, so anything older than late 2018 is likely no longer accurate. This article was particularly startling to me.

So, what can we do about it? I've started a new campaign in my home that I am calling the "convenient tree hugger" campaign. I'm looking for easy ways that I can use to reduce the amount of waste we discard every day. Some things are so easy I regret not doing them years ago, but better late than never, right? While much of my focus has been on reducing waste, particularly plastic, I decided to throw in a little animal love while I'm at it. If I'm already doing the research to find environmentally sustainable products, I might as well spend a few more minutes learning about a company's other ethical beliefs. Usually the companies that are into zero-waste packaging and sustainability are also big on being nice to the animals, so they're pretty up front and I don't have to dig very far!

So here are the criteria as I've been deciding which products to try and which ones make the final cut:

1. It must fit in my budget. And I work with a pretty tight budget. Dave Ramsey debt snowball type budget. As much as I would love to buy the vegan/cruelty free/stainless steel packaged/refillable mascara, $38 a tube just isn't going to happen right now.
2. It must work as well as the mainstream non-eco product. I used homemade and "green" laundry detergents for years, and eventually our whites were...not so white. I made the switch back to plain old Tide and I haven't regretted it. Though I will, in the near future, continue my search for a better option.
3. I am not opposed to making my own if possible, but it can't be overly time consuming. I have little ones, after all.
4. I'm not going to throw away a perfectly "good" product to make room for a new "better" one. I have a bottle of body wash that I received as a gift. To throw it away without using it would be wasteful and contradict what I am going for here.
5. For now, "better" is good enough. Toms of Maine makes some stuff that I really like, primarily their sensitive toothpaste. They are considered "cruelty free" (manufactured or developed by methods that do not involve experimentation on animals), but they are owned by Colgate-Palmolive, a company that is not. While I am searching for a toothpaste that is in no way associated with animal testing or packaged in a traditional "throw it away" tube, for now, Toms is good enough.

I'm really looking forward to sharing my finds with you all!

If you have a product (one that you make or one that you love) that you think fits the bill, I'd love to chat with you about it!

*Disclaimer: I know you can find absolutely any information you want on the internet, and that everything has to be taken with a grain or more of salt. But even if my latest reads are total BS and there is no plastic crisis in our world, the worst that will come of my efforts is less chance that there will be a crisis in the future. Worth it.

keeping my cool

Throughout this whole ordeal with the baby, and the continued ordeal with the baby, I've heard so many people say something to the effect of: "You're so calm through this". There certainly have been tears, but for the most part, yes, I do think Husband and I have done a pretty remarkable job of keeping our cool. There are two reasons for this:

#1: We have an amazing support system around us.

#2: We don't have a choice.

If you are struggling - with your own diagnosis, with the diagnosis of a loved one, with postpartum depression, with a string of bad days that have you down for no apparent reason - seek help. You do not have to do this alone. Asking for help does not mean that you are weak. It shows how strong you are. Just because some people appear to keep their cool does not mean that you have to, as well.

Here's the deal with my son's Lennox-Gastaut diagnosis and my apparent calmness: I realize that it sucks and I have mourned (and continue to mourn) the fact that my little dude may never have a normal life. But right now? He is doing amazing. He is defying the odds. His last several EEGs have shown remarkable improvement. He is developing socially, physically, verbally, and mentally at a steady rate, roughly a year behind his actual age dictates he "should" be. I realize that this could stop at any moment, he could start having a different type of seizure, or he could stop responding to his meds. Yes, it would be easy to dwell on that. I read stories about LGS children who develop fairly normally until the age of four or six, and then they stop, they regress, and their whole treatment plan has to be reevaluated. Sometimes the doctors just aren't able to get it under control. It doesn't mean they aren't good doctors. That's just the nature of this diagnosis. I am well aware of the fact that could happen to us.

But why would I want to dwell on it? Worrying about the future does nothing but rob me of the joyous present. And friends: there is so much joy to be had right now.

There are mountains to be climbed...

...meals to be eaten...

 ...books to be read...

and love to be shared.

These crazy little munchkins are raising a mommy who is present in today. Go hug a loved one.

lennox-gastaut syndrome: 101

I recently shared some information about infantile spasms, Baby D's first diagnosis. In November of 2018, we learned a scary truth. His infantile spasms had developed into something new: a rare and serious form of epilepsy called Lennox-Gastaut Syndrome (LGS).

The absolute best resource I've found for learning about LGS is this site. It gives you a ton of information in a way that is easy to understand. I really don't even need to write this post at the risk of being redundant, but I figured it might be good to make things a little more personal. When you can put a face with a diagnosis, it gets real. So I'll give you the super abbreviated version and this face to go with the diagnosis:

LGS is a rare seizure disorder, occuring in just 1-4% of all childhood epilepsy cases, or .1-.28 people per 100,000. A person with LGS can experience different kinds of seizures.  While Baby D's have all looked like his infantile spasms did (like this video), that could change at any time. Read about the different kinds of seizures here.

Because there are several different types of seizures and because they can change, treatment is challenging. One medication can be working really well for awhile, and then it can suddenly stop. We were warned of this the first time we spoke with his neurologist. He explained it by saying that treatment of LGS isn't necessarily a straight path. You don't try one medication because that's "the best" one and the move along a defined path from there. You aim for better each time. It's basically a very educated game of trial and error.

So what does treatment look like now? For us, at the time I am publishing this, Baby D takes a small pharmacy of medications each day: three that are specifically seizure meds, two dietary supplements, a multivitamin, and melatonin because he has trouble sleeping. I don't know that it actually does anything, but if Baby D with no melatonin sleeps even worse, that is not something I want to experience. Also, fluoride drops, because his teeth are in rough shape. I'm pretty sure this is an indirect result of the pharmacy that he ingests on a daily basis. I put so much awful stuff in his mouth, that he doesn't trust me with something like a toothbrush. It's a battle, and one that I am not winning at the moment.

In addition to the medication, we have physical and occupational therapists who come to our house each month to work with Baby D. We are so fortunate right now that he is progressing as well as he is. He's definitely still behind where a typical child his age would be, but he is catching up and gaining new skills very quickly.

So what's the prognosis?
That's a loaded question. The short answer is that we have no idea, so we're enjoying these days of progress. The long answer: he will likely have delays, possibly significant ones. He could be doing very well, and then suddenly stop responding to his meds. He could start having different kinds of seizures and we could have trouble finding the right combination of meds to control them.

"With LGS, some children have no developmental problems at first. But, with time, these problems may begin to appear."

"Unfortunately, there is no cure for LGS, so freedom from seizures and normal development is very unusual."

So...we don't know. Drop seizures are very common, so he may need to wear a helmet to protect himself if he starts having those. Emotional, behavioral, social, physical, and academic delays, to some degree, are likely. Again, the website above does a great job of spelling out the different possible outcomes. We're just taking it day by day and enjoying the good ones, knowing that they are not guaranteed.

What about non-pharmaceutical treatments? Wouldn't you like to try something more natural?
I would love to, but this is my kid's brain we're talking about, so I'm going to trust his treatment to those who have devoted their lives to studying it. I addressed this in my infantile spasms: 101 post, so I will refer you to that.

So what now?
Now I publish this post, go read in bed, and thank God for another wonderful day. Then I wake up in the morning (and several times in between, because Baby D does. Not. Sleep) and continue to love on my little ones. I know it could take a horribly challenging turn at any moment, but dwelling on that is unproductive. One day at a time.

Good night, friends.