December 22, 2022 by Stephanie

Seizure

When you become a parent, there are talks of sleepless nights, methods for dealing with runny noses and conversations about general sickness. We are warned about temper tantrums and the rise and fall of emotions.

But how to look for a seizure? Absolutely never a conversation we had.

It is one of those things that I am sure we all have seen on TV or movies, but never truly stop to think about how that may look in your world and with your kids.

As of a couple weeks ago, our life will never look the same because a seizure made its way into our reality.

Tom and I were watching TV when we heard Wally screaming. This is not abnormal behavior for Wally recently, and usually he is quite the bear to get back to sleep. He is very reactive waking up in the middle of the night, and it takes us several tries to lure him back to sleep.

So, when Tom yelled for me to come help him, I didn’t really think anything of it.

But as I walked in, I immediately knew something was wrong.

Tom had found Wally face down in his crib lying like a T, but just screaming.

The noise he was making was like nothing we had ever heard before. It was like a monotone screech.

His body was odd. It was like he was limp and stiff at the same time. He was not reacting to us picking him up at all with his body, but you could see the terror in his eyes.

I laid him down on our bed, and he just laid there like he was a doll. Normally, Wally would have climbed his way back on me immediately like a wild spider monkey, but he did not react besides the scream.

And then I started seeing his eyes roll back in his head, and I turned to Tom and said, “I think he is having a seizure.”

He was having a seizure.

We all started panicking, but Tom and I went into survival mode. I told Tom to go call 911, and I went back and forth from holding Wally and keeping him comfortable on the bed. I tried soothing him him the best that I could, all the while getting zero response from him.

His little body was limp and would go in and out of tremors, all the while his eyes were rolling back and forth into focus. When I could tell his eyes were with me, it was like he was trying to signal something to me.

We were both terrified.

And there was nothing I could do but watch. I felt so helpless, and here is my job to protect him, and there was nothing I could do to stop what was happening to him.

I am not sure the time that passed, but I would say the seizure lasted for at least 5 minutes if not closer to 10. It felt like an eternity for the ambulance to come.

Once they did arrive, Wally had stopped seizing. We decided for him to go to the ER to get checked out and be monitored in case another one came.

And here starts our education on what life with seizures could be.

I watched them put my two year old in an ambulance and then I drove behind the ambulance to the hospital. Tom rode with them, which honestly was a Godsend so I could have a break down in my car privately.

I cried the entire way following that ambulance. I knew nothing about what we were in for. I was scared for Wally. He is only two, and what does this mean for his life?

My anxiety went into overdrive.

Did we miss signs from the day?

Is this going to impact his development?

What happens if this continues?

What if? How come? Why didn’t we?

Fear overtook my ability to be logical.

Looking back, there was nothing about the day that stood out as a sign of something to come. He did not have any fever, ate normal, acted like the wild two year old that he is. There was no way for us to know.

Once we got to the hospital, the tests began.

They took a blood sample first, which they had to give him loopy meds for him to calm down to get the needle in.

The blood tests all came back normal. So no signs of viral or bacteria causes.

The next step was admitting us over night to do an EEG to get more information to a neurologist.

Wally does not like to be touched in general but add in the factors for strangers, exhaustion, and scary machines. This was torture for all of us. It took about 30 minutes for them to put all the EEG things on his head. 24 little nodules that they had to glue to his head while Tom and I both held him down. This was at 3 in the morning. I will never complain about having to wrestle him to get a diaper on again. That is a piece of cake compared to this experience.

Once it was on, we could not get Wally to sleep alone, which is a surprise because Wally has never been a fan of co-sleeping. I wasn’t mad about having to hold him for the rest of the night.

So the wait began.

The EEG monitored him for about 5 hours before the neurologist came to see us with his thoughts.

The EEG came back abnormal, and the neurologist confirmed the seizure from the reading. However, there was nothing else conclusive to share at that time.

They set us up with an MRI and a two follow up appointments: one with our pediatrician and one with our new pediatric neurologist.

Wally now has an neurologist.

My brain could not keep up with the information that was coming at me. I heard words explaining the medicine and the signs to look for, but honestly it is a blur.

The neurologist did explain that seizures are more common in toddlers than people realize. And all I could think was why no one prepared me for this. I guess the development occurs so quickly in toddlers that for some it can cause essentially “skips” in the brain communication in turn causing a seizure. They explained more, but that is what I gathered from the conversation.

And honestly I have refused to Google really anything since. I am scared the rabbit holes that I will be sending myself down to, and I am trying to have trust that we are getting the tests necessary to find out answers. My anxiety does not need to be diagnosing anything from the internet.

But the reality is that we may never have answers. It may be something he has routinely without warning or he may never have one again.

We may never know.

What I do know is that we are taking care of him, and we definitely listened to our guts that night, but it is scary to feel like we have zero control on this situation.

But here are a couple things that I have realized after having some time to process that night.

My feelings were a super power in that moment. My concern that something was off helped me in this situation. Who knew that my anxiety would help me lean into my instincts and shift into action to get care for my child?

The first 48 hours were honestly really debilitating. There have not been many moments in my life that I have felt that low and at a loss for control. I didn’t sleep, and I cried almost instantly thinking and overthinking every breath and move he made. I felt guilty for not having my eyes on him 24/7, which brought me to my knees. Through that reflection, I realized that fear could either define and limit me or I could process it and continue to move through it. I had to push myself to understand and accept that this unknown life with seizures is our new normal. That meant moving on with our days and going back to work, and not letting that fear dictate the kind of life we had. And eventually I have started sleeping again. There is not a day that doesn’t go by where I don’t think about it, but I can say it is not continued to be all consuming as it was that first week.

I am so thankful for Tom and I’s partnership. We were able to lean on each other during this to provide support, comfort, and stability through this difficult time. We both utilized each other’s strengths to provide Wally the best care imaginable, so for that I am truly grateful to be walking together through this.

I am usually pretty private with how I am really feeling with my anxiety. For the first time in my life, I actually communicated out that I was not OK. This was a huge step for me as I often don’t let people in to see that or ask for help. There were moments where thoughts entered my mind of how I could do certain things to meet all the responsibilities at home and work even though this huge thing just happened to us. I was able to catch myself and put some boundaries so I could honestly grieve. Because there is an element of grief here. Our life prior to that Sunday night is no more. And walking around like I was OK was not helping me. I was present, but I let my feelings out and shared them. I delegated things that in the past I would have just shouldered with my plate of armor not letting anyone in even though I was screaming inside that I was drowning due to the armor being to heavy. In a way this grief gave me permission to just let some of that facade go.

I don’t think we as parents are every fully prepared for these types of events. Not only the advocacy for your child and learning medical terminology, but also the emotional and physical toll that it takes as the parents who have to burden this weight. There is this push and pull of being strong and of sound mind to take in all the information and process it in order to ask the right questions and be the champion for your child but on the flip side your own needs are being stretched thin, but then you feel guilty for taking care of yourself so down this spiral you go trying to navigate a medical journey that is scary in its own right but when it is your child it is a whole other level of scary. I don’t know if it every makes sense but it is emotionally, physically, and all the things draining. It is a lot, and while it would have been nice to have known the possibility, I still don’t think you are every fully ready to be in this position. So with that I need to just focus on what I can do, what are the facts we know, and be willing to share with others more because all that is certain is this moment.

We have several appointments set up in January to hopefully find more answers, and for now he is on preventative medicine. I share this now because I felt so unprepared, and I wish I had known more in advance. While I am no medical professional, I hope that hearing some of these things may help someone in the future have their feelings and gut instincts perk up louder for their child.

In case you have not talked about seizures, here were things shared with us:

Seizures can present in many ways: fainting, convulsions, twitching, loss of consciousness, etc. They can be talking, or in our case, screaming through it. The eyes rolling back was the big signal to me beyond his body movements.
During a seizure, turn that person on their side and check for any airway issues.
Loose clothing if feasible.
Time the seizure, and document for yourself how the person acted. There will be A LOT of questions about their movement.
Call your doctor or 911.

Wally is seemingly back to normal, like it never happened. I, however, am forever changed. Will I forever wonder if today is the day for it to happen again, possibly? Am I OK today? Sometimes the fear still over takes me. (I cried the entire time writing this.) It is still a very vivid sight and sound in my mind, and there are moments where I am still reliving it on a loop in my mind. But I know I will eventually be OK, or I will be better equipped to move through the fear when I am not OK. I think I will forever be learning how to let others in and help when I am struggling, but I feel progress happening there. I am hoping that eventually we will have answers, but I have to trust that God will provide me comfort any way that this will go.

On a side note, hearing your two year old sing Mickey Mouse “Oh Toodles” while high on sedation medication during this process was a place where I think God said “hey you are struggling so here is this moment to lean on and smile at.”

November 30, 2022 by Stephanie

Walter-Two Years

Weight: 29 pounds.

Health: We had to go to Urgent Care a couple weeks ago because he just couldn’t get rid of a cough. He is cutting his molars, but we also suspected that he had RSV since Daphne was diagnosed at the same visit with it. He also had ear infections at the same time.

Diet: His appetite is almost non-existent. He eats fish, chicken nuggets, and meatballs. He hates pasta and pizza. He will eat peas, broccoli, and any fruit you put in front of him. His favorites this month are his breakfast bars, Gogurts, crackers, blueberries, and grapes. He also knows how to get into the pantry and pull the step-ladder over to get his favorite snacks. His favorite treat is chocolate covered pretzels like his mama.

Clothes: He is in size 2T clothes, size 7 in diapers, and size 8 shoes.

Sleeping: For the most part he is doing an ok job sleeping. Sometimes he can be a bear to get down. He has started talking in his sleep, or rather singing in his sleep. He does still have a nap during the day, but only if he is in his crib. He fell asleep on me for the first time in a really long time over our vacation because he fought a nap so hard at Silver Dollar City. His bedtime is 8pm, and he usually gets up between 8-9am. He DOES NOT like to be woken up. He also has started sleeping with a little mini lovey handkerchief sized thing. I am still too scared to give him a full blanket.

Likes: He loves magnatiles, Legos, and dinosaurs. His favorite shows are Bluey, Mickey Mouse Clubhouse, Super Monsters, and Dinosaur Train. He is constantly reading, and has many of our books memorized. He loves running water, and he can reach the handles now with a step stool, so that has been fun to pull him away from. He loves to run and jump into furniture, like launching himself with no abandon at full speed. His favorite phrases are “No” and “I don’t want it.”

Dislikes: Sitting at the dinner table. Being told what to do.

Nicknames: Walt, Waltie, Wally, Wally Bear, Wallington Bear, Waller, Wallace, Wallaby, Butters, Sweet Bean, Wallerbean, Stinkerdoodle, and Waltie baby..

Milestones: He has so many words. I feel like there are new ones every day, and he has 4-5 word sentences now. He can count to 15, and spell his name.

Quirks: The way he says “Okay” is by far the cutest thing he does. When he roars like a dinosaur, he does it with his whole face. If you say “I love you forever and ever,” he will respond with “and always.” He calls donuts, “doodats.” Since he watches Bluey all the time, occasionally he will call me “Mum.” When you ask him where is eyes are he closes them instead of pointing them.

We parents are: in a whirlwind, and honestly it is survival mode over here. A month ago, Tom had an unknown stroke in the bottom half of his body, which made for some very painful days. After consulting the urologist, we learned that he had a mass in one of his testicles, and the stroke had basically made that one die which was the pain he was feeling. Fast forward to this week after a month off work and barely being able to walk, he had an orchiectomy and a vasectomy. In basic terms, he had a testicle removed this week and is an unbearable amount of pain. There is a thought that the mass could be testicular cancer, so as crazy as it sounds, we are fortunate that he had the stroke because that mass was not there over the summer which means it could have gone undetected and passed on to other organs. Taking it out this week removes any chance that a cancerous mass could spread now, but we are still waiting to hear if it was actually cancer. So needless to say our life has been chaos. It is chaos on a normal month, but this month has been extra hard. I am really glad that we have each other to lean on.

Big kids are: doing great. They got glowing reports from school, and I am so proud of all that they are learning and how they are showing kindness to others. Both received a month award in the first two months, which makes me a little weepy! Walter is obsessed with his big siblings. He follows the big kids around, and tries to imitate them all the time. Tonight George said to me after hanging out with Wally, “I am trying to spend as much time with him because I just love him, and I know he won’t be this little forever.” When Daph is home, these two are stuck at the hip. They love each other so much. Their favorite thing to do together is play with puzzles and this plastic flower set. However, they are going to have to watch out because Wally has no limits. He tackles them all the time with full force. He has not learned that diving head first is not the preferred method of hugging. He is the honey badger of the family.

Daisy is: just living her best life. Wally loves to boss her around. He tries to get on her back. And one of his favorite things is getting food for her.

In case you are curious, here is George at two years and Daphne at two years.

There is something different about each of his milestones. I know Walter is my last baby. So I feel like I am cherishing the moments more than I ever did with the other two because I know this is the last time for us to experience all that this is.

September 30, 2022 by Stephanie

Walter-22 Months

Weight: He is 28.4 pounds. He seems so tall!

Health: He has had cold this last week, but in general he is a happy healthy kiddo.

Diet: His palette is pretty small now. Honestly his food choices mirrors Daphne’s in a lot of ways. He only eats fish, chicken nuggets, and meatballs. He hates pasta. He will eat peas, broccoli, and any fruit you put in front of him. His favorite this month are his breakfast bars, applesauce (which he calls “sauce”), and grapes. He also knows how to get into the panty and pull the step-ladder over to get his favorite snacks. Cool cool cool…

Clothes: He is in size 18-24 month clothes, size 6 in diapers, and size 8 shoes. I really need to push him up to 2T clothes, I just haven’t had the heart to do that work yet.

Sleeping: Today is not a great day to ask about his sleep. Last night he refused to go to sleep until after midnight. Where as the others we could do some co-sleeping, Wally ain’t about that life. So when he has a bad night it’s lots of standing rocking with Bluey episodes mixed in there. For the most part he does really well sleeping. He goes to bed around 7:30-8, and then wakes up usually around 8am. He has one nap mid-day. I still won’t allow anything in his bed, but he did just outgrow the Zipadeezip. So we’ll see how we transition to the next phase.

Likes: He loves any dancing show and music in general. He is obsessed with reading, and he has a routine of asking all the adults to read the same book in round robin fashion. We got out the wooden trains this last month, and he loves them! He loves to jump on our bed. He climbs on the chair next to our bed and then throws himself on the bed. He is also into cars, making animal noises, and saying no to everything.

Dislikes: He hates the Halo sleepsack which we have tried transitioning to since he can’t fit in the Zipadeezip. I may just have to be ok with real blankets…He hates being woken up early.

Nicknames: Walt, Wally, Wally Bear, Wallington Bear, Wally Olly, Waller, Wallace, Wallaby, Butters, Sweet Bean, Stinkerdoodle, Waltie baby, Cutie baby, Sweetie baby, Baby guy, and Baby Walter.

Milestones: My favorite new word is “dindeesaur” for dinosaur. He has so many words. I feel like there are new ones every day, and he is starting to piece words together for phrases. He can hop, and in a forward motion too. He can open doors with the long handles, and almost has round knobs down.

Quirks: When I turn out the lights to sing him his lullabies at bedtime, he growls “lights” at me so we can do a fun five minute game of turning the lights on and off while growling “lights” to each other. When he snuggles, it is like he tries to crawl up to settle in your neck. He does not want to sit in his booster seat at the dinner table and insists on being a big chair. He will race himself. He starts at one end of our living room, and waits until someone tells him go and then he starts running across the room.

We parents are: surviving. Getting back into the school year has been a lot to say the least. We really hit the ground running!

Big kids are: doing pretty good. They started school this last month, an they are both doing really well. Daphne was made for school. She skips into school every day. Yesterday she got the monthly character award. I am so proud of her for how nice she is to her classmates. George is so excited all of his activities are back. Wally definitely misses them when they are at school. When he has to go to drop off, Wally cries when they get out of the car. He follows the big kids around, and tries to imitate them all the time. George has figured out the walkie talkie feature on the baby monitor, and he says, “Goodnight, Waltie” and then sings him a lullaby before Wally falls asleep. It is so sweet! Daphne likes to drag Wally around just as much as Wally loves to be her shadow.

Daisy is: doing great. Wally is smitten with her, but he has started bossing her around. He hugs her and pets her all the time. And he loves to feed her off his plate. He tries to ride her sometimes too.

In case you are curious, here is George at twenty months and Daphn e at twenty months.

I look at him, and I just want to squeeze him. Always my baby he will be.

August 26, 2022 by Stephanie

George Turns Eight

We are going blindly into each new phase, just hoping that we are creating good core memories and raising a good human being. Most days I go to bed thinking how I could have done better, been more present, shown more patience, etc, etc, etc.

George, however, had a big year regardless of my over-worrying. Being our first born, he continues to show me the way.

We really turned a corner in school this year. This last year came with many learning moments, advocating for his needs, and trying different approaches to his education. He has been a little wild since the day he was born, and we definitely saw him mature over the last year to settle in at school. He has learned so much, and now he is a reading machine. Tom and I cannot spell things out in code anymore because he catches on faster than I can get the letters out. He also continues to challenge me to not project my definition of success on to him. Every day, I am also learning from him to be patient and lean into alternatives to be intentional with him. As he is learning about the world, he continues to open my eyes right along with him. I am so excited to see how he continues to grow this next year.

He is starting to hone in on his interests. He is really loving soccer, and with each season, you can see his determination grow. While I am sure we will continue to see his signature helicopter move for a few seasons to come, he has started to show some real promise and skill. He joined Cub Scouts this year, and from the first meeting, I knew that we had found his thing. He has loved every activity and moment as a scout. He cannot contain his excitement at each event, and it is so fun to watch the joy he has. It’s definitely a core memory watching him place at his first Pinewood Derby contest. He also dialed in on Star Wars, Pokemon, and Minecraft this year in a way I was not prepared for. So many times this year, he has shocked me with his understanding of the complexities of these universes.

The dynamics of relationships this year made a switch. It was very evident that we had entered the big kid phase. We are now in the stage that not everyone is automatically his best friend, and friend groups are being made. You can see little pieces of his innocence falling off as we have to step up our game in the types of conversations we had. We talked through how he navigates relationships with kids who are being unkind and how to remain true to who you are even when the crowd is going in a different direction. You never want to see your kid go through these challenges of peer pressure, but we have had to have hard conversations about our actions and what they say to others. There have been moments that we watched him struggle and as much as I want to shield him forever, I cannot. At the end of the day, I am so proud that George walks confidently in who he is mostly unabashed about what others think of him. I wish I had even an ounce of his confidence and carefreeness, because he either thinks everyone loves him or he does not seem to be bothered when they don’t. We received many comments from teachers about how kind he is and how he would tell classmates no when difficult situation arose. He is also extremely loyal to his people. If he has imprinted on you, you now have a hype squad for life. It was so fun to watch him create those connections this year.

Ultimately, this kid is too cool for me. He is so smart and follows his dad in quick wit. He tugs at my heartstrings. He is hilarious and creative. He is passionate and strong-willed. He can deliver the best stories and the strongest hugs. He finds the silver lining in everything and finds the meaning to things that others may have cast away. He is always a little wild from the way his hair constantly stands straight up or the way he brings his energy into every room he enters. Nothing is simple with this kid except that he has my heart forever.

Having him changed me forever, in the best and messiest kind of ways.

July 30, 2022 by Stephanie

Walter-20 Months

Weight: He weighs 26 pounds. He seems heavier every time that I pick him up.

Health: He has had cold this last week. There was also a random night where he threw up on me about every 30 minutes for 3 hour span and would only sleep if I sat in a chair holding him. It’s nights like that that make you very thankful for your full night’s sleep routine.

Diet: George and Daph started being picky right after they turned two, but Wally is starting his refusal for foods now. I don’t know if it has been because he has been a little under the weather lately, but he has hardly wanted to eat anything. Eating at our house is an adventure with everyone’s special pallets. He loves all fruits and yogurt. One of his new favorite past-times is pounding his tray hard enough that everything flies off or he just flat out likes to dump it on the floor and then say uh-oh.

Clothes: He is in size 18-24 month clothes, size 6 in diapers, and size 8 shoes. He is starting to wear some 2T stuff. We have definitely moved beyond the onsie phase.

Sleeping: For the most part he does really well sleeping. He goes to bed around 7:30-8, and then wakes up usually around 8am. He has one nap mid-day. I still won’t allow anything in his bed, and he wont sleep without a zipadee zip. He seems to be doing better when he wakes up in the middle of the night. For the most part he has been self-soothing himself back. Through our vacation and then having him in our room while we had guests during the 4th, we have found that he does not like other people to sleep in the same room as him. He would do fine in the pack and play if he was in a separate room. But if he could see your bed, no sleep for him (or you).

Likes: He loves watching So You Think You Can Dance, and he tries to dance along. He loves his dancing Elmo, and hearing him say “Elmo” is so cute. He is obsessed with the water table, and he would stay out there all day pouring water all over himself. But interestingly enough he does not seem as fond of the pool. He likes the show Bluey, and I mean who doesn’t? He really loves when everyone comes home and will greet us all with smiles and hugs. He loves his siblings, and they can get the biggest laughs out of him. He loves drinking out of any water bottle he can find. He loved the zoo, and making all the animal noises.

Dislikes: He is not a fan of being woken up in the morning. Same dude, same.

Nicknames: Walt, Wally, Wally Bear, Wallington Bear, Wally Olly, Waller, Wallace, Wallaby, Butters, Sweet Bean, Stinkerdoodle, Waltie baby, Cutie baby, Sweetie baby, Baby guy, and Baby Walter.

Milestones: His language has really taken off. I have lost track of all the words, and I feel like he has a new one every day. My favorite new one is “George.” He can open the fridge on his own. He got his first haircut, and he did so amazing at the barber. He can sing “Twinkle Little Star,” “Skidamarink,” and the ABCs. He is really good at putting things away including putting dishes in the sink.

Quirks: If he is not holding something, he has to be feeling fabric between his fingers. He immediately will pinch your clothes if you pick him up. You cannot go into the pantry without him being your shadow, and he will try to snag a snack while he is in there. George has started doing a nasal spray every morning to help with allergies, and Wally tries to mimic him by putting a pretend baby bottle in his nostrils.

We parents are: in a really good place. We had the best vacation this year in Colorado Springs, and it was so fun to explore and just be with each other. Then we got to celebrate the 4th of July, which is a favorite at our house. There is nothing like it. We are both doing really great at work. There are some big things coming up at work, and I am excited to see where things end up. I am starting my 9th year at CC, and it will be my 7th year teaching there. How crazy is that?

Big kids are: doing pretty good. They just ended summer school last week, so we are back on summer mode here. I still can’t believe that we have a 2nd grader and a kindergartner! George did so amazing in class, but on the first day he said “2nd grade is way more strict than 1st.” He just really clicked with things this last month, so hopefully that is indicative of how the next year will go. His teacher is a CC alum, so that was fun to connect with her in that way. We did go through a full allergy test this past month, and we learned that he is mostly affected by the barometric pressure than what you presume to be allergic reactions. So that was really informative, and hopefully with this new regimen, we will be able to keep him from getting sick as often. George loves hard, and we have had to work with him lately on being gently even though it seems like Wally can handle more horseplay. George often takes it a little too far energy wise. But Wally is in awe of George, so he usually doesn’t mind. He loves to cuddle with George when they watch TV together. Daphne is obsessed with Wally. Wally had a hard time when she was in school for the full day. He would try looking for her during the day. They love playing together, and Wally is always be in her space. He is definitely trying more and more to be one of the big kids.