California Coast

Our boy has been rooting for his dad this week. His dad is currently somewhere between San Francisco and Los Angeles (although today he rides into Los Angeles, so I’m guessing closer to LA than San Fran), raising money and awareness for The Arthritis Foundation. 

{Photo of Wyatt smiling, while wearing a shirt with a silhouette of California, with two hearts connected by a dotted line}

Brian is riding his bike 500 miles along the coast of California, camping each night, and pedaling over VERY large “hills”. He’s doing this to raise money for The Arthritis Foundation, to support programs and research for those battling arthritis. This foundation is near and dear to our hearts, as our beloved Addie is a child fighting Arthritis. (Yes! Kids get arthritis too!) 

{photo collage of Wyatt, rocking his California shirt. The pictures are outtakes, including one very blurry photo of him trying to crawl toward the camera and one making a silly face}

If you’d like to learn more about Brian’s fundraising efforts, or to donate, click 

here!

Seizures.

After yet another episode yesterday, that didn’t resolve quickly and required administration of his emergency seizure medication, we now have official word these “episodes” are seizures. 

{black and white photo of Wyatt, wearing his giraffe BiPAP mask, while strapped down on a stretcher in the back of an ambulance}

These episodes have been debilitating for us. Not only because it is horrible to watch your child stop breathing and turn an awful shade of gray, but also because he had stumped most of the medical experts at Hopkins and it seemed like nobody knew what these episodes were. 

I often will whisper to Wyatt that we need him to tell us what he needs, offer us some clarity. Which seems like a lot of responsibility for a 3 year old, but when top doctors can’t get a handle, we have to rely on him. This mornings episode consisted of not only all of the same concerns from previous episodes and he also added in shaking. Which made it abundantly clear that we were dealing with tonic-clonic seizures. When he didn’t respond within 2 mins, I gave his emergency medication and called 911. We needed to be observed since it was the first time we had given Diastat. He responded within 30 seconds. It was a huge relief but we still needed to be checked out. 

{black and white photo of Wyatt moving toward the camera with a grin on his face. The photo is blurry because he’s moving so fast}

After talking with his primary neurologist, we feel like we have a solid plan to tackle these head on. Our first step was a final increase in his Keppra. If this doesn’t work, we will add in a second medication that we can titrate to get the right dose. We remain hopeful we can combat these seizures with medication. 

Here’s to a seizure free weekend and some rest for all of us! 

Off to School!

Check out this guy!

{Photo of Wyatt, sitting on the ground smiling with a sign next to him that reads, “Wyatt’s first day of ECI”}

This guy started school today. His first day of ECI (ECI = Early Childhood Intervention) in the public school. There have been a few times (okay, three to be exact) in the last week that we thought this day might not come. For those of you who keep up with us on Facebook, you’ll know portions of this story but some of Wyatt’s loyal followers only follow here so I’ll share the story. 

Last week on Wednesday, I was getting ready for work while Wyatt was playing in his crib when I heard his pulse ox begin to alarm. When I got to his room he was unresponsive, blue, and very rapidly declining. I immediately put him on BiPAP to get breathing going and called 911. Within a few minutes, he was somewhat alert and responsive but not himself. The ambulance took us to Hopkins and we spent the day in the ED trying to figure out what might have caused this episode. There were some guesses, but ultimately the decision was to send us home and monitor by keeping pulse ox on him at all times. 

Thursday morning, very similar situation. He was playing in his crib while I was getting his meds and feeds ready to administer when I heard the pulse ox alarm. I ran to him and saw a similar situation: unresponsive, blue, and dramatically declining with oxygen saturations in the 20’s (normal is considered 92 and higher). He was not okay. I put him on BiPAP, called 911, and held him until the medics arrived. Terrified I was losing my son. He was taken to Hopkins again and we struggled to figure out what might be causing this. His viral panel from the day before came back positive for rhinovirus, but I knew these episodes were not from a virus. In the ER, he was sleepy but eventually returned back to himself. But we were stumped. 

{Photo of Wyatt playing with Velcro on pads designed to keep him safe in a hospital bed}

We called in multiple specialists to provide their input- was this a pulmonary issue or neurological issue? Regardless, it was obvious we were not going home. Even though he appeared much better. 

The team agreed to at least 24 hours on the EEG to monitor for signs of seizures and in hopes that we could record one of the episodes. Twenty four house passed and no episodes. Determined to get answers, the team had him stay on for an additional 24 hours. Which was super fun- a toddler. Tons of probes. Wrapped in gauze. And must be contained in his crib. I’m sure you can imagine how that went. 

{Photo of Wyatt, with his cap and leads on the crib next to him. They were ripped off by him and he was so proud of himself!}

At the conclusion of the study, there were no episodes and we were no closer to answers. Other than we could rule out that an increase in seizure activity was to blame for these episodes. We stayed one more night in hopes that we may capture an episode while in the hospital. 

We didn’t. 

{Photo of Wyatt sleeping. His hand is reaching between the slats in his crib and he looks very peaceful}

We returned home that evening, hopeful we would never have to see another episode and chalked it up to bad luck but also knew we needed more info. We had a solid plan for follow up care and felt like we would be able to manage him at home. 

Monday morning after Brian changed his diaper and ran downstairs, his pulse ox began to alarm. We knew. 100% knew this was an episode. Sure enough, same story as Wednesday and Thursday- unresponsive, blue, and sats dropping fast. 

We intervened with BiPAP, held him, and watched as his sats slowly increased back into the 90’s. He looked okay, so we chose to call the team rather than 911. We monitored closely and he was largely unfazed by the event. We, however, were terrified. 

Without knowing what was causing these episodes, we began to wonder if there was something in his room causing this. Immediately, we moved him to our room in his pack n play in order to see if that would make a difference. It did. He hasn’t had an episode since. That means in the last week, the three mornings after spending the night in his own room, he had these episodes but nights he slept outside of his room, no episodes. 

I began researching what we needed to do in order to figure this out, knowing his medical team would need exact answers to a) research and b) treat him (if intervention is needed). We also knew we couldn’t put him back in that room if it’s causing these episodes. 

It’s a wild hypothesis, but we know Wyatt is wild. 

So, this morning we got him ready (after making sure everyone involved in his care knows the signs, and the intervention) and took him to his first day of school. A day that we weren’t sure would actually happen for him. 

Tonight we continue to count our blessings and hope you all do too. Continued prayers that these episodes stop and we find the cause of them so we can come up with a treatment plan. 

A Thousands Words...

Sure, a picture is worth a thousand words. But what if what you see in a photo doesn’t tell the whole story? I often think about this from the social media angle, but tonight I thought of a different perspective. 

Take this photo for example...

{Photo taken looking down at Wyatt who is climbing on playground equipment, his fingers through the holes in the grates}

You see Wyatt, hands on playground equipment steps. 

What you don’t see is me using my body to protect him, to keep him safe, to support him so he can focus on trying to do tall knees, a skill he’s working hard on in PT, so he can access the playground equipment like the other children on the playground. You see hands, in the grates. What you don’t see is a little boy who sees using his hands because his eyes don’t see so well. You don’t see him (hear him?) clicking his tongue because children around him are playing and that’s how he “talks” to people right now. 

{Photo of Wyatt sitting on a step on the playground equipment, one hand on each step}

You see a boy who is sitting on a step, with an unusual coed hanging out from his waist. 

What you don’t see is a little boy who is using an hour of his freedom from cords (he only gets 4 cord-free hours a day!) to play on a playground. 

You see a boy who is going barefoot on public playground equipment.  

What you don’t see is a boy who spent an awful lot of effort in the car seat entertaining himself by taking off his SMO’s (braces) and his socks, exploring the world barefoot because he doesn’t get much time to do that. (Sidenote: you also don’t see the look of relief on his mothers face because while he entertained himself beautifully in the car, if he had taken off that cord, she’d mentally be doing the math to ensure there were going to be enough cords to get through the month since insurance only covers 5 of them a month and toddlers don’t care about those details). 

You don’t see a boy who is using both hands to “see” his world to know if it’s safe to attempt to move independently, or if he should put his arms up to go safely back in his moms hands. 

You don’t see a boy who has worked so hard to master sitting independently only to struggle a little more because he’s not feeling well. 

{Photo of Wyatt, sitting on a slide. One hand is propping himself up and the other is touching the slide}

You see a picture of a kid with chubby arms, sitting on a slide. 

What you don’t see is years of stress, counting calories, dreading scales because every ounce counts. You don’t see a boy who seconds before had licked the slide (toddlers are gross!). You don’t see a boy who is using his hands to assess the safety of the slide, because it’s an unusual feel and he’s not sure what to do next. 

Pictures are worth a thousand words, for sure. 

And for humor... what you don’t see in these photos is a kid who had a “code brown explosion” who required a hazmat suit to be changed in the back of the car because, wow. Dude had a bad one. 

All this to say, there’s so much more to photos. Each one has a story, a feeling it evokes. I’m thankful everyday that I am fortunate enough to get to snap photos that tell our story, and a safe place to share.