Tuesday, August 14, 2018

Two Years Seizure Free!

Two Years Seizure Free!

Some of you might remember last year on this day, when we shared our celebration of Emmett being one year seizure free. In the world of epilepsy, an entire year of seizure freedom is huge, and many families recognize it the same way they would a first birthday. I remember feeling incredibly emotional that day, and profoundly grateful. It was honestly our dream come true for him.

Well yesterday, we got to celebrate two years without seizures. Two years. Our lives were so much different two years ago at this time, and the thought of two solid years without a seizure felt completely unattainable. I can't put into words what a big deal this is to our family.

I know most of you know Emmett's story, but for those who don't know, I'll explain as briefly as possible. (If you know the story, feel free to skip to the end!) When he was seven months old, he starting doing an occasional movement that just seemed a little "off" to me. It was incredibly subtle, and mainly looked like reflux. (He would do a little shrug, and every now and then his head would slightly bob - which is common for babies.) It happened for a few days, and while everyone who saw the videos I took felt that it was nothing unusual, we decided to take him to his pediatrician. His pediatrician didn't seem overly concerned, but referred us to a neurologist, just in case. And less than 24 hours later we were in the children's hospital with a diagnosis of Infantile Spasms, the most dangerous (literally labeled "catastrophic") form of childhood epilepsy. The prognosis with the vast majority of IS kids is very poor. The seizures are difficult to stop, the treatments have horrific side effects, and most children with IS have developmental delays, cognitive issues, and physical challenges. The first weeks in our IS journey was by far the worst period of my life. To have what you believe is a completely healthy baby and then be told, almost overnight, that he has an absolutely horrible disease that is profoundly difficult to treat, is devastating.

Emmett underwent countless tests (multiple EEGs including a 48 hour video one we did at home, MRIs, spinal taps, genetic tests, multiple blood draws, and more) and was started on an intense, expensive ($34,000 a vile; he needed several) medication called ACTH, which had to be injected into his thighs (by Robbie and me) over a two and a half month period - first twice a day then tapered down to once, then eventually to every other day. The medication was the worst part of the journey for us, because of its side effects. In addition to causing children to develop Cushing's Syndrome (weight gain, "moon face," etc.), it causes reflux, blood pressure issues, and horrific irritability. While on the highest dosage of this medication, Emmett completely stopped smiling. We had to sleep sitting up and holding him upright or he would scream and writhe in pain. He nursed around the clock, and had an insatiable appetite. Our happy, engaging son was replaced with a shell whose only emotion was misery. But the medication worked. Since August 13th, 2016, Emmett has not had another seizure.

Emmett had his yearly assessment by Early Intervention last week (by his developmental and speech therapists; he no longer needed occupational or physical therapy as of a year ago), and was evaluated as completely on track (even ahead in many areas), and no longer needs any therapy at all. He continues to be a typical little boy who loves playing outside, running, swimming, coloring, singing, acting out scenes with his sister, and playing with friends. We know this is not the usual outcome for IS, and as I have said before, we will never take that for granted.

After two years, we still have no idea what caused Emmett's Infantile Spasms, and may never know. His MRIs showed a normal brain. His genetic testing came back normal. His bloodwork was all normal. His lumbar puncture was normal. The best guest from his neurologist is that he had a random, spontaneous genetic mutation (every human has an average of 40 of them!) that manifested as IS, and that the medication rebooted his brain.

(Photo from his one year seizure free celebration last August.) 

At Emmett's last meeting with his neurologist a little over a year ago, we were told that if he went two years without a seizure, his epilepsy diagnosis could be unofficially dropped. And while we were told that he will always have a chance of other seizure types occurring, for now, we are celebrating this wonderful milestone.

There is so much more to the story, so if you're interested, feel free to contact me. And if you come across this because you have a child with Infantile Spasms, or you know someone with a child who has IS, please feel free to reach out to me. I have made a lifelong vow to help other parents going through this, and it is my hope that when Emmett is old enough, he will be able to do the same.

To my favorite little boy in the world, happy two years seizure free! We thank the universe for you and all you have accomplished every single day.


Monday, August 13, 2018

5 Ways to Make Car Errands Fun Adventures For Little Kids

5 Ways to Make Car Errands Fun Adventures For Little Kids
Thank you Maxi-Cosi for sponsoring this post. Keep your little adventurers comfy, safe & stylish with the Maxi-Cosi Magellan 5-in-1 car seat!

My kids (especially Essley, my 4.5-year-old daughter) are officially in that stage of a child's life where car rides inevitably become filled with the repetitive "are we there yet?" inquiries. Over and over and over again. And again. I have a lot of errands to run throughout the day for work and life, and after enough occasions where Essley made it very clear that the time spent in the car was unbearably boring for her, I decided (for both of our sakes, if we're being honest here), we were going to have to make these errands into adventures. Much to my surprise, it worked. So I thought I would share with you a few ways we've transformed our everyday outings from mundane to fun.

1. Play I Spy. Maybe this doesn't sound very original, but we take things up a notch and make regular old I Spy more adventurous. We'll choose a theme (usually having something to do with magical lands or unicorns or something else metaphorically sparkly if Essley has any say), and we have to find things that fit into that category. For example, I might see a water tower and say "I spy with my little eye an enchanted castle." (I'm not going to lie guys, it's kind of fun for me too.)

2. Go on a treasure hunt. Essley is huge into the idea of hunting for treasures, so for this game, she'll bring a "treasure map" (last time this was a brochure from the doctor's office) and pretend that the car ride is a journey to the treasure. She'll pretend she's telling me which way to steer the boat and what we see along the way, and once at our destination, we'll find the treasure (usually something the kids like on our grocery list).

3. Turn the car seat in a magical carriage. Essley was beyond stoked when we recently got her the (new!) Maxi-Cosi Magellan 5-in-1 Convertible Car Seat and was downright thrilled when she learned that she would be able to use it in Booster Mode "just like a big kid." She declared it her magical carriage, and thus began the best boring car ride game yet. She insists on wearing a tiara and bringing random trinkets (which often include a pinwheel doubling as a magic wand), gets buckled into the seat, and the adventure begins. She usually narrates the entire journey, which is admittedly pretty freaking adorable.

We have become huge fans of the Magellan 5-in-1 Convertible Car Seat (and plan to switch Emmett's to this as well), thanks to its innovative design that accommodates children from birth to 10 years old (5 to 120 pounds!), with five modes of use: Baby Rear-Facing, Toddler Rear-Facing, Toddler Forward-Facing, Child Forward-Facing and Belt Positioning Booster. We knew we'd be upgrading Essley's car seat soon because she was at the weight and height to transition to a booster, but for our own preference in terms of safety, we wanted one that was still a car seat as well. The Maxi-Cosi Magellan provides this for us. Essley also told us that it is "as smooth and comfortable as silky hot chocolate" (sounds good to me!). And we love the attractive design, and the fact that fabrics are machine washable. You can also remove the cup holders and put them in the dishwasher. Woot!

4. Turn the car seat into a spaceship. Same idea as number 3 above. Both my kids love to pretend they're astronauts (or space aliens) and their car seats are rocket ships launching into space. We especially love this game when it's night time and the stars are out. Essley likes to pretend the cup holders on her Magellan 5-in-1 Convertible Car Seat are her controls. It's kind of awesome.

5. Pretend you're traveling the world. Yes, my kids are 2.5 and 4.5 and don't really seem to think our flights to California or the Dominican (from Chicago) are much different than our hour-long drives to the lake in terms of excitement - but they do seem to find it much more interesting to pretend we're on an adventure to explore the world than on a mission to go buy more apples. Usually Essley decides where we're going. Last week, it was Australia - every street sign we passed was a kangaroo, and there were koalas hanging out in all the trees. The best.

For those of you with little ones who ask the "are we there yet" questions even on the shortest of errands, I hope these ideas prove useful for you! And if you're in the market for a new car seat, I can't recommend the Maxi-Cosi Magellan 5-in-1 Convertible Car Seat enough, which retails for $349.99. I wish they'd made it when my kids were newborns so we could have had them from the very start! You can find it at Amazon, Target.com, Buy Buy Baby, Nordstrom.com, and Albee Baby.

If you have any other tips or ideas for making errands adventures, I'd love to hear them!

Thank you for supporting the brands that help make Bubby and Bean possible. I was selected for this opportunity as a member of CLEVER and the content and opinions expressed here are all my own.


Friday, August 10, 2018

The True Meaning of Life

As you read this post, I will be en route to California for my best friend's memorial. I talked more about his passing here, and am so grateful for all of the messages you guys sent and for your kind words and good vibes. It's not about me though - it's about his wife, parents, and 2 year old daughter Mika who were left behind. I am really looking forward to making the journey and being with them and friends we call family, and celebrating the life and memory of a genuinely incredible person.

I wanted to share something I'll be reading at his service, because I think it's an important reminder for all of us. This particular quote struck me for two reasons. The first is that when I was living at a Tibetan Buddhist center in the early 2000s, Goki came to visit me from Colorado, where he was living at the time. The center was owned by the Dalai Lama's family, and I lived in a house on the grounds. The Dalai Lama's brother ran the center, but didn't come out much. Goki happened to be standing in our driveway when he approached Goki. They ended up having a long conversation, and a strong connection was formed that Goki talked about often. The other reason I chose this was because I feel that of anyone I've even known, Goki found the true meaning of life, as is described here. He found happiness, and he spread happiness. Always.

We are visitors on this planet.
We are here for ninety
or one hundred years
at the very most.
During that period,
we must try to do
something good,
something useful
with our lives.
If you contribute
to other people’s happiness,
you will find the true goal,
the true meaning of life.

-His Holiness the Dalai Lama

I hope you can take this into your weekend, and focus on feeling happy, and contributing to other people's happiness. This is what Goki did, and I am inspired to try harder to do the same.

Photo of Goki, his wife Marissa, and his daughter AnaMika by our friend Jami Matlock.


Wednesday, August 8, 2018

GIVEAWAY: Win a $150 Gift Card to Gaia Conceptions Eco-Friendly Clothing

This final chapter of summertime is such a magical time of year. I really make a conscious attempt to soak up the last of the sunshine and longer days, veggies and herbs and flowers growing in my garden, ice cream dates with my little ones, and the effortless, laid back clothing I enjoy so much this time of year. I've mentioned this before, but as summer transitions into fall, I really look for clothing pieces that I can wear now and into the next season (and beyond). And that's one (of many) reasons I love Gaia Conceptions so much. They offer hundreds of made-to-order styles crafted from eco-friendly fabrics that are made to wear year round. And each piece is made by hand in your size and color choice, right here in the USA.

Gaia has been a partner of Bubby and Bean for many years, and I've really gotten to know them and their gorgeous designs. And that is why I'm thrilled to announce that we are teaming up with them once again for a truly incredible giveaway! One lucky Bubby and Bean reader will receive a $150 gift card to spend in Gaia's online shop, on anything your heart desires! Scroll down to enter...

GIVEAWAY: Win a $150 Gift Card to Gaia Conceptions Eco-Friendly Clothing
Use the form below, and/or, because the main methods of entering this giveaway (worth the most points) involve Instagram, you can also enter directly on IG, right here. There are several options for extra entries as well.

a Rafflecopter giveaway

This giveaway will run through this Monday (August 13, 2018), and is open to Bubby and Bean readers worldwide. All entries from the Rafflecopter form above and Instagram will be combined. A winner will be randomly chosen via Random.org and announced here shortly after the end of the giveaway.
for an email with more information.

Thank you to Andrea and friends over at Gaia Conceptions for giving our readers the chance to win another gift card to their incredible shop. Good luck!