Witch Doctor Update

I referenced a follow-up visit to the witch doctor in my last post. Unfortunately that appointment was rescheduled because our boys both came down with sore throats, fevers and runny noses. So instead we did home COVID tests that were negative and took Teddy to the pediatrician instead of podiatrist to check for any other obvious, treatable illnesses. 

Fortunately it was just one of the many viruses floating around, and the fever didn't cause any seizures for Teddy for the couple days he experienced it. It did, manage, however to give us several solid days of worry and anxiety. As Dave and I reflected on it, I said that any virus that causes a fever causes us this fear of seizures. Dave's addition was " ... and dying." Dave worries more than I do, perhaps because I don't play out the worst case scenario and just worry about the first bad thing (seizures). 

This hit me, though, because the reality is that pre-COVID, we were always concerned about influenza. For us, a virus isn't just a couple days of a sick child. It's always that fear of something worse: seizures, ER trips, hospitalizations or death (apparently for Dave). Now, worrying doesn't change or prevent any of these from happening, so I know we both need to work on our coping skills. But we do focus on what we can control, which is trying to minimize some of that risk for Teddy.

Amazingly, the adults in the household avoided this virus. That is truly remarkable given the amount of snot we wiped off Teddy's face ... and our clothes. Disgusting! I'm going to attribute it to copious amounts of water loaded with vitamin C and other immune boosters, along with eating whole cloves of raw garlic daily for several days. Sheer competitiveness caused me to chew the clove the first day before switching to the much more palatable method of cutting it into small pieces and swallowing it like a pill.

And what's the point of all this randomness? We all were healthy enough to go on our planned vacation, which I'll share about in my upcoming posts!

Oh, and Teddy went back to the podiatrist yesterday, and she confirmed that his wart was completely gone! 

We Have a Weird Sense of Humor

Before Christmas, Teddy developed what appeared to be a blood blister on his foot. We attributed it to his braces rubbing weird, and we discussed it with his PT. She advised we reach out to the person who made his braces, so we sent an e-mail with pictures and didn't get a reply. After a week or two, the blood blister appearance changed simply into a really wicked callous.

It didn't both Teddy. And I'm a runner, so my feet are wonderfully calloused to the point that I often don't feel blisters that develop because my callouses protect me from them. So we weren't concerned about it ... until I noticed it bleeding the other week. 

That seemed odd and concerning, so we set up an appointment with his doctor. Dave took him to the appointment, and the text update I got was: He's a witch. Burn her! (He was channeling his inner Monty Python.) It turns out that it was now a sizable wart. 

Whoops. I'll maintain it started as a blood blister and a callous and then magically became a wart. That's my story, and I'm sticking to it.

So I've been calling Teddy Pumba (get it?), and we went 2 weeks ago to the podiatrist. Teddy wasn't too keen on them doing anything to him, so they slathered on some cream and told us to keep it bandaged. They even gave us a scalpel to take home to try to scrape away dead skin. Lucky for us, Dave is a doctor. Never mind that he has a PhD rather than an MD ...

I'm pretty sure you don't want to see the actual wart.

So we've worked at it a few times, not because it's fun or because Teddy sits still, but because it'll be much easier for us to do what we can at home rather than in a doctor's office where Teddy is struggling the entire time. (He struggles with anything that feels medical, even if it doesn't hurt, even since NIH and then the last sets of ER visits for seizures.) 

The good news is that it looks like last night Dave was successful in getting it all out. We see the witch doctor again Monday (seriously, that's how it's labeled on the calendar) and are hoping for good news. 

Lifestyles of the Rich and Famous

Maybe rich is an exaggeration, but Mr. Teddy has finally made his way into research papers! So he's clearly famous. OK, maybe famous is an exaggeration as well, but this has been 5+ years in the making. 

When he was first diagnosed, the genetics team was excited about his case, the rarity of his diagnosis and his notable differences from some of the earlier research papers that painted a bleak prognosis. They wanted to write a research paper, but indicated it was a process that could take longer than a year due to limited resources. Let's just say that never came to fruition.

Then there was a person who was presenting a paper about Teddy at a conference, and we were so excited that his information would be shared to help educate others. Then a minor thing like a global pandemic cancelled that conference, and that never came to fruition. (Or we never saw or heard the final report, if the individual was able to present it.)

The other week a family in our PIGN group shared a research paper they had received, and another parent asked if it was the result of the NIH natural histories study because she recognized names of researchers. Sure enough, as I read the paper and the case studies, Teddy's profile from NIH perfectly matched.

So he finally is included in research, representing who he was already 3-4 years ago when we were at NIH. (There's a whole series of posts on the blog about the intensive testing done there if you want to know the details.) 

Unless you have access to medical research libraries, you likely won't be able to find the 2022 publication of PIGN Encephalopathy. But I can send you a copy if you're interested in reading it. Unfortunately, though, unless you possess significant medical background, you probably won't find much value in it. We learned early on that reading any medical research involves looking up the definition of approximately every other medical term because they are written in jargon not understandable English. 

Is Anyone Getting Married?

We haven't been to a wedding in years. COVID plays a huge role in that, given that we've hunkered down through the pandemic, but we're also at that season in life where we're not invited to many weddings. The cousins are all married, and we're (thankfully) too young to be invited to the weddings of kids of people we know. 

The downfall in this is that weddings are a great excuse to hit the dance floor. I'm down for dancing some, but children love to dance. AJ had so much fun dancing at weddings when he was younger, particularly when he was obsessed with the Cuban Shuffle. Teddy enjoyed hopping around the dance floor because at the last wedding, he was at the bunny hop phase of movement. 

Now, this child walks, runs and hops (on his feet now) everywhere. He spontaneously starts dancing when he hears upbeat music. While AJ struggled to figure out how to dance to the SuperBowl raptime (Haha, get it? Halftime. Raptime. Hahaha.) show, Teddy was down with it. 

I wish we had a wedding where this child could showcase his skills. Now, don't get me wrong, I'd be a sweaty mess from chasing him everywhere and he'd be into everything, but he'd have a blast doing it. I suppose the good news is I don't think his love of dancing will disappear anytime soon.

Loving Life

This child loves time outdoors in just about every form or fashion, particularly when he's directing his own destiny. The stubbornness is strong with this one, as is evidenced by every attempt to get him into a vehicle and out of the vehicle once we get home. But while he's outdoors, he's a happy camper, even though we've had cold, windy weather lately. (Wisconsin in February is not the most ideal. Seriously, I never heard of a snow squall before last week, but I discovered what that was when I was driving in it.)

We spent some time outdoors this weekend. Dave, Teddy and I visited a nature preserve without a specific plan in mind. We wandered mostly where Teddy's legs carried him, tried sledding in a few spots and perhaps fell off the bank several feet down. Good thing Teddy is durable and remarkably unfazed by something like that ... unlike Dave. As long as we don't have plans to do a specific hike or walk, it's quite enjoyable to follow Teddy's lead. It eliminates a lot of the power struggles we sometimes encounter. I've also learned from our childcare providers that making things fun like playing Red Light, Green Light or fun, stomping walking or giving him a stick can make walks more enjoyable. Sometimes he needs a distraction to keep him focused, if that makes sense.

You can feel the joy, can't you?

We also spent some time at a park on Sunday when it was unseasonably warm (and therefore a soggy mess) and windy. Even though the temperature didn't require snow pants, we wore them anyways in an attempt to stay drier. *Shakes head at silliness* Teddy was quite pleased to discover the puddles to stomp in, slip around in (because there was ice under the water) and generally play. He also found a ball to carry around and send down slides. It was great to spend time outdoors and simply playing at Teddy's level.

He's Got a Knife!

Teddy has a high interest in helping in the kitchen, coupled with limited safety skills. It's not the best combination, so we work with very close supervision and sometimes hand-over-hand assistance. He's gets so excited when we let him help stir dishes on the stove. Although it makes me nervous, he does very well holding the pan handle with one hand and the spoon with the other. 

There's no way, though, that we trust him with an actual sharp knife. He's been working with a butter knife. The challenges with that are that it's not as sharp as needed to cut some things, and the bigger challenge is his inability to know which way to hold it. He often tries cutting with the knife upside down.

So we discussed this with his OT, and she recommended several different options. We purchased a set of serrated plastic knives intended for young children, along with a wooden cutter. He is doing great with holding the knife properly and is chopping so well. And he's so proud of himself. And so are we.

This Child Loves Cheese

I'm not quite sure what Teddy's favorite food is, but I can guarantee that carbs and cheese are both high on his list. He will snag either off the counter and run off like a bandit to enjoy his stolen goods (including entire loaves of sourdough or pounds of cheese). He was quite excited when we stopped to get fresh, deep-fried cheese curds at the cheese factory along the way to the farm last weekend.

Gosh, he looks grown up here.

And these pictures just demonstrate the weirdness that is Teddy.

He's sporting his baby Yoda sweatshirt. 

And this, well, he's just weird.