It's Hard Some Days

These are challenging times, no doubt. Our family is extremely blessed that both of us are still actively employed and able to work from home with rare exceptions. We are also fortunate to have childcare for nearly 40 hours a week, which makes working from home possible.

But it's hard to entertain our children in only our house, avoiding outside when the neighbors are outside because Teddy's idea of social distancing is smashing two people into the same tunnel while giggling.

It's hard for AJ to only have his brother, us and babysitter for playmates. It's harder yet because Teddy is not an ideal playmate who talks, listens well and plays as a typical child. That makes my heart ache for AJ, who'd love to play with his best friends Natalie and Brynn.

It's harder yet because I know that when things open up, that our family will still need to be exceedingly cautious. We have Teddy who licks everything and is extremely high risk for seizures with any fever, much less a prolonged one. We've watched him intubated once and never hope to see that again. One of my greatest fears is that if Teddy becomes ill, will he be alone in the hospital? I'm certain at most one of us will be allowed to be with him, and that's so terrifying. 

It's hard because Dave has done all the grocery shopping since March, and he hates grocery shopping. He does it because unfortunately I take immunosuppresents for my Crohn's disease, so we need to be cautious for me as well. The two things I have going in my favor are that I will wear a mask and that I don't lick everything. 

It's hard because we want to spend time outdoors to enjoy the beautiful weather, but we have to turn around at trails that are too busy. We're not willing to take that risk.

It's hard because I'm working more hours than I've ever worked before in my life, having my phone ring with calls in the middle of the night and ding with texts at all hours. The works I'm doing isn't my normal role, as is true for so many, and it's the challenge of working together to lead our organization through this crisis. 

It's hard when one of our boy's running buddies loses her husband to the disease. We pray daily for her, and our hearts break for her and the suffering she's enduring so alone right now.

It's just hard. It is. Somedays. Sometimes every day. But it could be so much worse. 

And it's not hard every minute of every day. There are bright days and bright moments. There's reasons to smile every day, and all this crap makes us appreciate the little things and the good things so much more.

Running with Teddy on a new trail was our reason to smile today.

Neurology Visit - Quarantine Style

Do you see a trend here? Teddy had a big week of appointments this week, including appointments with an allergist regarding his reactions to three different families of antibiotics and his regular neurology appointment.

His allergy visit was non-eventful because that was a virtual visit, which was so much easier than wrestling Teddy in an actual doctor's office. In fact, the allergist didn't see Teddy at all, and I just discussed his different reactions with her. The good news is they're able to remove one of his allergies, and there's a second one that we could consider some modified testing (because she's very understanding of Teddy's tolerance for waiting in an exam room) to possibly remove. So, that's something we'll look at once life settles into a new normal where human contact is allowed.

His neurology visit was live and in person, though. Although we had some hesitations in taking him out in public, we decided it was worth it to ensure he has the right protection from his anti-seizure medication should he become ill. (Also, postponing a neurology appointment means you won't be seen for several months, so there was that to consider.) We both planned to accompany him to better entertain and keep him out of trouble since we didn't want him to touch all the things he usually would. But the day before his visit, the final screening call for symptoms also informed us that only one "visitor" was permitted.

Nothing like a doctor's appointment to motivate you to sew a few masks. 

So I took Teddy to the clinic, wearing my stylish new mask made with supplies donated by one of my running friends. I didn't bother attempting a mask on Teddy since it would only end up on the ground. We used his chair in an effort to keep him contained and avoid touching things and headed inside. We made it through the initial screening, and thankfully, they didn't make me attempt to put a mask on Teddy.

It was weird to see so few patients and every single staff wearing not only masks but also eye protection. They had the reception desks blocked to keep 6 feet of distance between you and the receptionist. Teddy and I had the waiting room to ourselves, which is good because eventually he wiggled out of his chair, so I danced and twirled him and got rides in his chair to keep him from touching anything other than my hands and his chair.

Once we got into the exam room, though, I had to remove him from his chair. So he touched pretty much everything there, but he didn't lick anything. I'll consider that a win. (The really good news is that they are completely sanitizing the exam rooms between every appointment and wiping down every surface.) Teddy did remarkably well with his vitals and interactions with both the nurse and the doctor, despite them looking different with masks and face shields.

I absolutely adore his neurologist. He is brilliant, yet explains things in common language without making you feel like you're an idiot. He's incredibly personable, checks on how we're doing as parents and interacts amazingly with Teddy. In fact, the first thing he told Teddy is that he normally would give him a hug but couldn't today. He's creative in his evaluation of Teddy, avoiding the need to do labs by looking for physical signs of any reactions to his medications. His stuffed parrot Jabber couldn't join us today, but he still checked Sponge Bob, Squarepants, Tigger and Pooh Bear as he checked Teddy's different body parts. He sees nothing but good in Teddy and wants to make sure we're comfortable with the treatment plan.

Teddy's Keppra is increasing slightly, an extra milliliter a day over the course of a week, to accommodate for his growth and keep him at a good level. His doctor said that some might consider weaning from Keppra after one or two years seizure free, but he'd look for at least four years for Teddy. I said that after he ended up in the ICU when we tried to wean him after 2 years, we're good with him staying on Keppra indefinitely. He certainly understands and wants the same thing we do, which is to keep Teddy safe particularly during this pandemic.

It was a different visit, shorter than usual simply because we're minimizing risk by minimizing contact. He offered the chance to wait a year until our next visit, but I took the 6-month option because I'd rather we have that appointment if needed. Also, it's honestly a pleasure to see him, which isn't the case for most doctor visits.

IEP - Quarantine Version

We had Teddy's IEP this week. Wisconsin is still safer at home (and will be through most of today as was announced today), contrary to how some people choose to act. So his IEP was done via Zoom, which is how I spend a good portion of my days in meetings with my co-workers. Dave said the IEP was a success from the start because he didn't need to fit into a child-sized chair in a room full of people he barely knows. I felt better prepared than last year since I remembered (last week) to ask for a copy of his IEP at least a day in advance, so we could read it and take notes.

His IEP went much smoother than last year. The person facilitating his IEP knows Teddy rather well, so we avoided some of the struggles from his last IEP when there was a substitute facilitator who knew her stuff but not Teddy.

It is absolutely clear that his team enjoys Teddy for who he is and have all seen solid progress in this shortened school year. They all had positive things to say about him, ranging from his tenacity to his social skills to his sense of humor. It was fun to hear the first grade teacher say how she sees Teddy joking with his classmates, and she also complimented his ability to clean up his garbage from breakfast with only verbal prompting.

I appreciate so much his OT because her care for Teddy is obvious. She enjoys working with him, knows which battles to pick (between socialization with his friends or proper use of utensils at lunch, depending on the day) and recognizes so much of his strengths.

His teacher has done really well with him this year, and we've seen him able to identify some shapes, follow directions much better and increase with so many different little skills. In fact, he's really close to mastering another sign. We've been working at home with him for the sign for candy to use to ask for a treat, and tonight he did it perfectly with us modeling for him!

The best part of his IEP was when his gym teacher shared a picture from what was his last day at school for the year. They tried roller skating, and he said Teddy was persistent, willing to try and made it the length of a mat. I'm not sure where they found that many pads, but oh my goodness!

Anybody else feel like they need this many pads to attempt to roller skate?

And, it was a milestone IEP for me, since I made it through without crying once. I came close when the facilitator reminded us that Teddy is in this particular program, which doesn't mean he's at a particular school if the district moves his program. I made the point that although we understand that, it would be a shame for him to move away from all his traditional classmates where those friendships are established. For now, we'll just worry about whether the kids go to school in the fall, much less which particular school Teddy is at.

Happy Easter

We wish you a blessed Easter. This Easter is quite different for most of us, but honestly so much of being quarantined actually aligns to our family's needs and preferences. There were no expectations around this holiday. The kids searched for eggs and baskets while I listened to worship music. We watched church while coloring at the kitchen table, rather than two of us sitting inside for Mass and two of us sitting with Jesus at the marble statutes outside. Teddy and I did door drops while Dave grilled steaks (way better than ham!). I tried homemade croissants for the first time, which we all agreed were delicious. We enjoyed a family movie of Bedknobs and Broomsticks on an air bed in our living room, and it was an Easter miracle that Teddy stayed in the room for the entire movie.

The boys were excited for the candy (Teddy) and baskets (AJ). Teddy felt no need to collect a lot of eggs and would much rather eat each egg's peanut butter cup as he found them. His love of life extends to his love of food, particularly sweets and bread. I take it as quite the compliment when he's already asking for more as he has half the food still on his plate and the other half shoved in his mouth. (I suppose that's the advantage of being non-verbal is that you can clearly ask for more with an obnoxious amount of food shoved in your mouth.)

One of the best parts of our day was the joy in delivering goodies to dear friends from MTT. I am baking every weekend (in mass quantities), so I dropped off a small loaf of sourdough with bruschetta and a bottle of wine. I know I like homemade gifts or thoughtful things that remind me as I'm eating or puzzling that someone was thinking of me, so I try to do the same. But I know the absolute best part for our friends was coming outside barefoot on a chilly day to say hi to Teddy from a distance. He was so excited to see them, and they even ran in to grab a phone to capture the moment. It's incredible the joy Teddy brings to others.

There's no way Teddy was looking at the camera with his friend blowing him kisses.

The other best part was our family movie. Teddy does not sit still. Ever. For more than just a few minutes. But he managed to stay in the same room, mostly on the same air bed, for a rather long movie. He loves music and moving, so when everyone was dancing on screen, he was dancing right along with them. There's no way you can't smile at his dance moves.

Happy Easter! I hope you can channel your inner Teddy and find the joy in each day.

Running with the Help of Angels

Spring has sprung here in Wisconsin with temperatures reaching into the 50s for the first time in months. It's wonderful to get days with sunshine and warm weather, and fortunately we're able to get outside yet to enjoy it despite COVID-19.

We've gone for quite a few family walks (although I was quite bummed to find the trail near AJ's school closed to prevent spread of disease). Butt I wanted to get out more, so I reached out to myTEAM Triumph to see if we could borrow a running chair until training runs resume. Thanks to Christian and Corey for making agreeing and even helping get a chair to us. Even though it was in storage all winter, I sprayed it down with disinfectant and let it sit overnight.

The next day, I added AJ's bike and headed out work my boys for a workout. AJ on his bike provides a speed workout as I attempt to keep up with him and tackle all the hills he wants. Teddy provides the strength workout as I push him through the miles and up the hills.

All the miles. All the smiles.

We made it 6 miles, only because AJ was determined to go that far. We all had a fantastic time and got to enjoy the beautiful weather. Thanks to MTT for making this and future runs possible!

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