Our Vacation In Pictures

About 6 weeks ago, I lamented to my husband how much I missed visiting our national parks. Within a day, he suggested the possibility of visiting New River Gorge, the newest national park that we haven't visited. As COVID was currently calming down, it seemed perfect to plan for a spring break trip. We still took all the precautions we could (masks indoors when around others, limited hotel rooms and opted for rentals instead and no dining at hotels or restaurants). But we got to go on vacation!

As background, our family loves to travel. Ever since we visited two national parks on our honeymoon, we have planned nearly all our travel around national parks, monuments, etc. Each year we have explored our country, often on trips that no sane person would consider with young children. As Teddy has grown older, these trips have become more stressful and the tough realization that the hikes of years past are in the past. But we still managed to have a wonderful time with a few adaptions.

Most of our stops along the way were rest stops to allow Teddy to stretch his legs, unless we needed gas. We had to change him in the backseat of the truck, as there's rarely suitable changing locations for a 70-pound child who's way too tall. 

That scrunchy nose gets me every time.

Teddy loves exploring new places. Fortunately our first rental had very little in terms of decor or things that he could easily break. In fact, both our rental places worked well for Teddy, aside from needing locks on the bedrooms.

Teddy loved the game room at our rental place. We all did.

We spent the majority of our time at New River Gorge National Park, as we hadn't explored it yet. It was a great place to spend time outdoors exploring, and the weather was beautifully cooperative for this part of the trip. The river is the center of the park, and this was the day we were checking out the falls and rapids on the river.

Aren't we all so cute?

Notice the semi-matching cameras for Dave and AJ. 

We gave AJ our old digital SLR camera on this vacation. We had talked about selling it because we don't use it, and instead we decided it would be a great opportunity for AJ. He absolutely loved it and commented that now he really was like Ansel Adams, his namesake. It also motivated him while hiking and exploring. Teddy, meanwhile, was motivated by adventure. The rougher the trail, the more fun.

I'm sure his chair was meant for this terrain ...

I mentioned a few adaptations. The single best thing we did on this vacation was bring along reinforcements! Our wonderful childcare provider loves to travel and explore, and she was willing to tag along with us. She gets along fantastically with all of us and fits right into the family. I think she might need to join us for every vacation, especially considering she got Teddy asleep both nights in hotel rooms. Magic, I tell you, pure magic.

AJ loved being able to go off exploring with Bri.

On our first day of driving, I mentioned that it was both a good and bad thing that I packed the backpack carrier for Teddy. I said it's a bad thing because I might use it, but it's a good thing because we have it if we need it. Well, we did need it. Teddy can hike remarkably well when he wants to, but he didn't want to finish a particular hike. In fact, all he wanted to do was run in the opposite direction, when there was a really tall cliff about 20 feet away. I carried him for less than a half mile, but it made the hike so much more enjoyable rather than trying to convince a child laying on the ground to move in the right direction.

One day he will be big enough to carry me. Hopefully he listens by then.

We were fortunate enough to have hot tubs at our rentals. The boys did an afternoon dip, so that Teddy got to enjoy the experience. Otherwise, we usually hot tubbed while Teddy was going down for the night.

Teddy was excited to enjoy the hot tub.

All of our kids, including our childcare provider, did the Junior Ranger program to earn their badges. Well, we did Teddy's booklets at most parks. AJ was really happy to add 6 badges to his collection, including 5 brand new locations.

This was the most official swearing in ceremony in front of the backdrop.

After a few days of nice weather, we transitioned to much cooler and rainier weather. It felt appropriate for Fort Necessity, where they were in rain-filled trenches fighting all day. It also felt appropriate for the somber tone of remembrance at Flight 93 Memorial.

This is my favorite picture of Teddy from the trip. 

One of the most amazing parts of our trip was being able to connect with not one, but two, other families with CDG-PIGN. We had previously met one of the children 3 years ago when Teddy did his week-long study at National Institutes of Health in Maryland. It's amazing how much both of them have progressed in just 3 years! And then the next day we got to meet a nearly 2-year-old sweetheart, who took us down memory lane to when Teddy was that little.

Teddy spent Gettysburg pushing Alexa around, when we didn't put him in his own chair.

This is Teddy giving his version of a hug to sweet Hayden.

I felt better sneaking away for a couple runs because Dave had an extra set of hands to help. It's a good thing because the chairs we brought for Teddy weren't always meant for all the terrain, so Bri carried Teddy's chair up and down the stone steps on this path, but they got to explore a cool trail while I ran through Cuyahoga Valley National Park. 

Everyone is happy, even me as I was dying running hilly trails.

It was an absolutely wonderful vacation, although it felt really short when we were back home a week later. Our earlier trips have been upwards of 2 weeks, but we managed to pack a lot of fun and exploring into this week. And then we had a day at home to sleep in our own beds and recover before heading back to our normal routine.

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.