raising a mommy

raising a mommy

Thursday, October 3, 2019

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.


Monday, September 23, 2019

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!

Saturday, August 31, 2019

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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Thursday, August 29, 2019

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.

Wednesday, April 10, 2019

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.

Friday, April 5, 2019

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.

Thursday, March 21, 2019

infantile spasms: 101

In January of 2018, our little dude was diagnosed with a rare seizure disorder called infantile spasms. Since then, our journey has been, to use the appropriate cliche, quite a roller coaster.

For some basic information about infantile spasms from at actual doctor, I would encourage you to check out this 25:00 video. It's a bit long, but it covers everything. The more awareness there is, the easier it will be to get babies diagnosed quickly. It wasn't easy for us to get the diagnosis for our little guy, and I learned that you really do have to advocate for your child. As a parent, you need to trust your gut and push a little bit, even if a doctor tells you she doesn't think it's seizures and you're fine to just keep your normal appointment with your family provider in two weeks. We weren't satisfied with that, so we called a couple of places and found a neurologist who would see us in two days. He watched five seconds of video I'd taken before giving the preliminary diagnosis, which was confirmed with an EEG that afternoon. But I had to push a little bit.

Here are some of the most common questions I've been asked with their answers:
Spasms? Seizures? Which is it? Because it doesn't look like a seizure to me!
Me either! In fact, when we were first trying to figure out what was going on, I called my insurance's 24 hour nurse line looking for help. One of the questions she asked was, "Does it look like a seizure?" Of course I answered no, because my picture of a seizure was eyes rolled to the back of his head and limbs thrashing. Her question got me thinking, so I did a google search for "seizure disorders in infants." It didn't take me long to find this video, which allowed me to self-diagnose. That is exactly what Baby D was doing.

What caused this?
We have no idea. Surprisingly, this is actually a good thing. I can tell you what did not cause it: vaccines or electricity from the baby monitor we used in his room. No joke. Someone told me once that it was the use of electricity in his bedroom, like from a baby monitor. His MRI was normal, which means there's nothing structurally wrong with his brain. Nothing definitive has come back in several rounds of genetic testing and there is no history of seizures that we know of on either side of the family. Babies with no known cause are typically less likely to develop another seizure disorder later in life. Unfortunately, that wasn't the case for our little dude, but what can I say? He likes to be a trailblazer!

What is the process like to get a diagnosis?
If you suspect your child may be having spasms, try to get it on video. I took the video to our first neurologist appointment, and, within seconds, he was able to give us the preliminary diagnosis. We got checked in to Children's Hospital that afternoon, and an EEG confirmed it. When a baby with IS gets an EEG, it shows a very distinct pattern called hypsarrythmia. I'm no doctor, but I can tell that it looks like a mess!



How is it treated?
There are a number of different options, and the one you try depends largely on what your doctor prefers. We started off by giving the baby an oral steroid, prednisone. It helped, but it didn't get rid of the spasms completely. The next thing we tried was a hormone injection: adrenocorticotropic hormone, or ACTH. Giving my baby shots twice a day for seven weeks really sucked, but he stopped having spasms and his brain began to develop again, so it was obviously worth it. Both of these are typically (I believe) used fairly short term. Another option is Sabril, which is often used for longer periods of time. With the two drugs we used for Baby D, there were additional side effects. They were immune suppressants, so he was on antibiotics as a precautionary measure. They elevated his heart rate, so he took medication for that. There was something about increased acidity in his stomach, so he was on something to combat that. Elevated glucose levels, increased weight gain, inability to sleep at night unless physically attached to mama, and general constant crabbiness were additional issues we had to combat with daily tests, constant nursing, and a combination of medications. Not going to lie. It sucked.

What about the ketogenic diet/CBD oil/massage therapy/this other thing I heard about in a TV special?
Yes, these can be valid suggestions in some cases. I have talked to my son's neurologists about keto and the use of CBD oil. Here's the deal:
The ketogenic diet can be used as an effective and natural treatment of seizures in some cases. It's simply another avenue that doctors try, particularly if conventional pharmaceutical medicines don't work. From what I understand, the keto diet takes several weeks to be effective, and the seizures often get worse before they improve. With infantile spasms, quick treatment is key. Baby D wasn't developing, and was even regressing, while he was having spasms. By stopping the spasms as quickly as possible, you are giving your child the best chance to resume normal development. I think I also read somewhere that keto is most effective if the spasms are caused by a certain chromosomal abnormality. I could be making that up, but since that wasn't the case for our little guy, I wrote it off.
CBD oil seems to be the big new thing right now. I'm not a doctor, but when I asked D's neurologist about it, he was adamantly opposed to giving it, FDA approved or not, to a young child whose brain is still developing. He said that it can lead to very serious mental health issues, such as schizophrenia and others later in life. The most recent article I read stated that it has been FDA approved for ages two and up. By age two, a child who formerly had infantile spasms will likely have a new diagnosis if they are still having seizures. Hence the use of the word "infantile". So CBD oil probably shouldn't be used to treat infantile spasms. But ask your doctor. Don't take it from a mom blogger!
So yes, there are a number of natural avenues that can be pursued in the treatment of IS. However, as I mentioned earlier and as the doctor in the video I shared above states, quick treatment and resolution of spasms is key. This is my kid's brain we're talking about. If keeping him on high dose steroids for two months gets rid of the issue, I'm going to try that before I eliminate key food groups and hope for improvement within 6-10 weeks. I appreciate your input and I'm sure your intentions are good, but his father and I, along with a team of very intelligent and highly trained doctors and nurses, have got this.

This seems pretty scary: what can I do to help?
Why thank you. Yes, it is indeed very scary! There are a couple things you can do to help someone who is dealing with an infantile spasms, or another scary medical diagnosis.
#1: Vaccinate. While D was on treatment for IS, he could not get vaccines because the medicine compromised his immune system. His neurologist still advises against it, because his brain is, as he described it, a delicate instrument that we're trying to get in tune. You want to make sure it's solid before you give vaccines, which can cause problems for someone with a seizure disorder. They can not cause a seizure disorder, but someone who already has a seizure disorder needs to be careful. We are depending on herd immunity to keep him safe. I know some people are scared of the negative hype around vaccines. I know you may think you have a good immune system, so even if you do get a preventable disease, you will be able to fight it off. However, if you happen to pass it along to my son somehow, you could be endangering his life. Please keep in mind, if you decide to pass on that flu shot or a tetanus booster, that it is not just your life that you are potentially endangering, but his, as well:


#2: Food. This is universal. Medication made him constantly crabby, which made it difficult for me to get to the grocery store or to prepare food when I was able to make it to the store. His compromised immune system (especially in the middle of winter when this whole ordeal started) made me nervous to leave the house. We were so fortunate to have people regularly checking in on us, picking up the gallon of milk, loaf of bread, or bunch of bananas for us, and even bringing us prepared meals. Friends. Our village stepped up. It made what could have been a true disaster for my mental health into a difficult time, but one we were able to get through. Because we were not afraid to lean on our village.
#3: Company (but only if you're healthy and vaccinated). This time in our lives was isolating, but a time we needed companionship more than ever. We were scared to go anywhere and risk exposing baby D to germs, but we were also experiencing cabin fever to the extremes. To the people who came over and sat and talked or helped make dinner or swept my floor while I nursed an inconsolable child: you are what got me through.

What's the prognosis?
The sooner is it controlled, generally, the better the prognosis. Some kids see a resolution to their spasms quickly and never have another problem. Some (like our baby D) develop a different seizure disorder later in life. Some have longer term struggles as a result of the spasms or treatment of them, such as learning disabilities or emotional and behavioral issues. It depends largely on the cause of the spasms and how quickly they are brought under control.

What's next?
We got D's spasms under control in February of 2018. Then he relapsed in May, we got them under control, and he relapsed again in October. When the ACTH failed to control his spasms by November, we got the news: the infantile spasms were developing into Lennox-Gastaut Syndrome. The bad news: this is a very rare and serious form of epilepsy that is extremely difficult to control. The good news: we have an amazing doctor and we caught this early, giving D the best chance at a normal(ish?) life. We're taking it a day at a time, rejoicing in every victory and refusing to dwell on the setbacks. I mean, there are occasional bouts of wallowing in self-pity, eating ice cream straight out of the carton, and binging Netflix, but the next day I go for a run, make a healthy smoothie, and look for another reason to be grateful. They're not hard to find.

Baby is is raising a mommy who is resilient and grateful.

Saturday, March 16, 2019

when you're in the season of receiving

It's a hard thing, accepting help. It's one I've gotten better at, for sure, but it's still hard. Especially now, when I'm in the season of receiving.

It may seem small to the giver, but it is not. Whether it's a meal (or two meals every week for two months), a grocery run, a text saying "Hey, can I snuggle your crabby baby for an hour so you can go for a run?", a stop at our house-for-sale to shovel off the driveway before a showing, a restaurant gift card, or a store credit set up by friends that leads to these beauties:



It is not small. It is not no big deal. It is wonderful, and it is so, so appreciated. You are so appreciated. We all encounter difficult times in our lives, and I don't know how people get through them without leaning on those around them. My village is the best. That's all there is to it. You. Are. The. Best.

To those who are receiving: It's okay to accept help. It is good to accept help. You are worthy. You deserve it. Don't for a moment think otherwise. (She said, mostly to reassure herself.) Lean on your village and be grateful. And then, when you are out of this season, do what you can to pay it forward.

To those who are giving: Your generosity is more appreciated than us receivers can say. It will not be forgotten. Sometimes you may feel taken advantage of, and sometimes you will be taken advantage of, but please don't stop giving. You are amazing.

Wednesday, March 13, 2019

another update on the baby

Oh friends. What. A. Trip.

Most of you probably see my updates on Facebook and the like, but I'm feeling the need to do something a little more in depth. Our baby, and our whole family, has been through a lot, and I think I owe it to those who care about us and have helped us to keep you updated. Also, writing is therapeutic. Not quite as therapeutic as running, but until I can work new shoes into the budget, that's not going to happen. So I turn to my keyboard.

When last I left you with a baby update, you know, in January of 2018, we were in the hospital awaiting the arrival of our infant son's medication at our home so we could get out. I'd love to say that things have been all rainbows and unicorns since then, but that would be a lie. For back story part one, read this.

On to part two:

The ACTH injections did the trick. We saw our last spasm on February 7th, 2018 and then everything seemed good. In this case, "good" means the spasms went away. He was getting shots twice a day and a whole slew of oral medications every 8 hours on the dot (as in alarm at 2am), so "good" is a relative word. Also, the hormones, like the steroids, kind of turned the poor baby into a monster. He was so chunky and uncomfortable and miserable that all he wanted to do was eat and snuggle. And sleep a little bit, but only in short chunks and while nursing. Obviously, it was a small price to pay for his health, but it was still a difficult time.

We got a couple clear EEGs and followed our taper plan to a T. One Friday in mid-March, toward the end of the taper, a switch seemed to flip. Baby D started smiling and even laughing again. It was a sight we hadn't seen and sound we hadn't heard since December of 2017, so to say it brought tears to our eyes is not at all an over-dramatization.

We started weekly physical and occupational therapy sessions through the school district. At first, Baby D was so chunky that he couldn't handle tummy time. He couldn't turn his head comfortably and lay on his puffy cheek, so we were taught alternative positions. Within a few weeks, he was not only a tummy time champ, but he was rolling in all directions and holding himself up on his forearms. He had a pretty good amount of mass to hold up, so this is an impressive feat!

Memorial Day weekend, things changed. We started to see the spasms come back. In January, when we received the Infantile Spasms diagnosis, Baby was having 4-6 clusters of spasms per day. Each cluster would consist of 15-20 or more spasms and last around 5 minutes. To see what they look like, check out this video. On Saturday, we saw two clusters of 4 spasms each. We called the clinic right away and spoke with the on call neurologist, who told us to keep a close eye on him and call back on Tuesday when the clinic was open. Long story short, we ended up in the hospital again.

Seven more weeks on meds and we saw another resolution, with baby D getting his last shot the day before his first birthday. It was quite a celebration!

This time, he made it nearly two and a half months spasm- and medication-free before relapsing in the middle of October. He was put on a different schedule this time - a shorter time at a higher dose with a longer taper. Initially, things were going great. Just like the last two times, we stopped seeing spasms within a few days of starting medication. We made it through two weeks of two shots per day and eagerly started to taper - down to just one shot per day.

Things were different this time. Baby D didn't regress like he had before. He didn't completely lose his sweet baby personality. He would still play and smile and giggle. He would roll like crazy, and he even started to sit on his own. (Can I get a HALLELUJAH!)

Following the plan, we gave him one shot per day for seven days. Then we skipped a day. Then I took him on a weekend long retreat with me, where he charmed everyone with his smiles. Then he started having spasms again. I called the on call doctor. Go back to shots every day.

No resolution.

Go back to two shots every day.

Improvement, but still no resolution.

After a week and a half of two shots per day, our wonderful neurologist recommended that we get a second opinion. We requested a referral to the Minnesota Epilepsy Group on Wednesday. On Thursday, we were told that there would be a room ready for us at Children's in St Paul on Friday and could we check in between 9:30 and 10?

Of course we could.

Luckily, we have mastered the art of quickly packing for hospital stays of undetermined lengths of time. It's a skill. Not one that I hope any of you ever have the opportunity to perfect, but a skill, nonetheless.

Baby D had a cluster of spasms on Friday morning as we are getting ready to leave, which further cemented that we were doing the right thing and were not, in fact, overreacting.

We got checked in to the hospital, got Baby D hooked up to an EEG, and started to settle in.
I have to insert a little note here to let everyone know that we absolutely loved our doctor at the Noran Clinic. He was wonderful and brilliant and we always felt heard and cared for and knew he was 100% on our side. Should you find yourself in need of a pediatric neurologist, I would be more than happy to give you his information.

But now Baby D has a new neurologist who seems equally awesome. There was something incredibly comforting about being in a hospital with a designated Epilepsy Center. Everyone was on a whole different plane. These were people who worked, full time and then some, only with children with seizure disorders.

We met with the neurologist who told us, among other things, that it looked like Baby D was developing out of infantile spasms and into Lennox-Gastaut Syndrome. Don't Google it. If you do, don't tell me what you find. I know it can be bad.

We (mostly the doctor) came up with a new plan that involved weaning the baby off of the ACTH (yay!) and introducing a new seizure medication with fewer crabby side effects. After a few days in the hospital, we were sent home with a whole new pharmacy to get used to. The spasms went away, the baby continued to progress, and we were so, so happy.

Our next follow up was mid-December, and Baby D looked off the charts amazing. Not at all like a typical LGS kid. It hasn't been perfect or easy since then, but that's the nature of Lennox-Gastaut Syndrome. It's difficult to control, and, with each tweak to the medication, you hope for better. Obviously, you would love to see a complete resolution, but "better" is often all you can ask for.

There have been more hospital stays, more EEGs, more follow ups, more blood draws and labs, more tears, hugs, and all-night snuggle sessions in the last 14 months than I care to count. It has been hard. Sometimes it has just plain old sucked and there is absolutely no other way to describe it. But through it all, we have discovered just how many truly amazing people we know. From meals to hugs to gift cards to afternoons off to sympathetic smiles to prayers and everything else: we have felt the love.

So there you have it. This little chunker is doing amazingly well, and he is raising a mommy who is grateful for every smile, giggle, and crabby snuggle.

From last November when we got our new diagnosis - note the chubby steroid cheeks. While he's still plenty snuggly, he has slimmed down a lot since this was taken!