Thursday, November 16, 2017

Are You Feeling Brave?

That was the question posed by Teddy's neurologist at his appointment last week, after he greeted us and asked Teddy how he was doing.

Seriously, he is the best neurologist. Even when our appointments are months or even a year apart, he walks in and greets each of us by name. He talks directly to Teddy and then uses his parrot Jabber to help with his examination of Teddy while checking his belly for Tigger and Pooh Bear. He's approach is amazing, not to mention that he knows his stuff and can explain things to us in a way that makes sense without making us feel stupid.

The reason for this neurology appointment was to determine whether we wean Teddy off Keppra, his anti-seizure medication. We had discussed it at his appointment in May but wanted to hold off past our 3-week vacation to the remote parts of our country. Now, in the midst of cold, flu and every other bug, we were faced with the decision.

Teddy hasn't had a seizure since June 22, 2015. That's a long time, which means perhaps his body has adjusted to be better able to handle that things (like fevers and illnesses) that caused seizures in the past. Or perhaps any seizure activity is simply prevented by the Keppra. The only way to know is to remove the Keppra and do an extended EEG to see what's going on inside that mind of his. (If only! At least the EEG is designed to see if seizure activity occurs.)

We decided to be brave, with a plan to wean him off Keppra gradually over four weeks. After one week of no Keppra, then we'll head in for ideally a 48-hour EEG. We'll be in the hospital basically for as long as Teddy will tolerate it. A standard EEG has a response rate under 50%. A 24-hour EEG has a response rate around 80%. A 48-hour EEG has a response rate around 93%. EEGs done at home have so much additional feedback that they aren't considered nearly as accurate.

Of course, when we got home from the neurology appointment, we discovered Teddy had a fever over 100 degrees. I think God has a sense of humor. Teddy stayed home from school that day but rallied to be well enough to head to school Friday. Saturday he developed croup. Seriously, God either has a sense of humor or is testing our resolve.

We will continue with the plan to discontinue Keppra, but we're waiting a few more days until he's over this crud. Then time will tell ... but I can't deny the thought of another seizure is terrifying. I'm hoping and praying I won't be making that type of post for a long, long time. Like ever. But I'm enough of a realist to know that it likely will happen someday.

I still can hope someday is a long time in the future.

Monday, November 13, 2017

Diagnosis Day

Two years ago today Teddy was diagnosed with Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. That 3-hour genetics appointment changed our lives. We left with a completely unexpected diagnosis, one that had only been discovered 4 years earlier. We were told Teddy was the 15th person in the world as far as they could tell from research. We were given about 15 pages of medical research, which was about all they knew about his diagnosis.

We told my aunt his diagnosis because she was at the appointment occupying AJ for that incredibly long appointment (which really isn't all that long when you're trying to remember high school biology and process that your child has an incredibly rare diagnosis). But as we left, we determined we weren't telling anyone, including our parents, his diagnosis until the geneticist clarified the life expectancy not to exceed three years that we saw in the research papers. Somehow, they missed addressing piece despite Dave asking about long-term prognosis.
Teddy on diagnosis day, completely unfazed at rocking out world.

We headed up north after that appointment, and I took a long walk with Teddy on my back, sobbing the entire time. The memories, fears, guilt, lost dreams and all that jumble of emotions comes back to me as I type this.

It took at least a month to start wrapping our arms around the diagnosis. We often said we had a name, but it didn't change much of anything. That wasn't completely true. Having this diagnosis dashed our dreams ... until we learned to accept our new normal.

Now, two years later, his diagnosis has changed our lives for the better. Knowing is better than not knowing. We've been able to educate ourselves and others. Most importantly, we've connected with other families with the same diagnosis. We've laughed at our children. We've cried at each other's losses. We've shared information, ideas and stories. We've given each other hope. We've simply existed for each other-knowing the others makes it infinitely easier to have a child who is far rarer than one in a million.

For that, above all else, I am grateful we received our diagnosis.

Sunday, November 12, 2017

Can't Catch a Break, But He Can Catch Croup

Teddy seems to have a perpetual snotty nose. It seems like he holds onto colds longer and just can't completely shake the snot. So we didn't think much of his snotty nose this past week until he didn't want to eat breakfast Thursday morning. He played with other children happily and seemed mostly his usual self at his neurology appointment (more on that another day - nothing alarming). When he didn't want to eat lunch, that's when I wondered if he had a fever. Sure enough, he was over 100 degrees.

That meant quick calls to the bus company and the school to let them know Teddy wouldn't be gracing them with his presence that afternoon. He perked up with Tylenol, and we dismissed it as the same bug AJ had the previous weekend. Teddy was back up and running the next morning with no fever.

Then on Saturday, he developed the characteristic barking cough and wheezy breathing of croup. Dave took him to the walk-in clinic, where he was diagnosed with croup but given no medication because it's a viral infection.

Hanging out at the doctor's office - great place for a Saturday.

He napped both yesterday and today and slept fairly well last night despite the barking seal cough that punctuated his sleep. Dave slept next to him a good portion of the night and early morning hours, just to be sure all was well.

The last time he had croup, that I recall, was unseasonably late in the year in May 2015. I remember that distinctly because that bout of croup led to a middle of the night ER visit with me rushing him to the ER because of a seizure. Croup is bad enough because it's tough to hear your little one barking like a seal and wheezing for every breath like a smoker with lung disease. But for me, croup is scary because it was one of the illnesses that caused him to have seizures and has all those memories of the seizures and ER visit associated with it.

He's seemed less wheezy throughout today with only periodic coughs, but night is when croup worsens. I'm hoping tonight goes as smoothly as last night. I'm expecting him to stay home from school until he's past the worst of it to avoid sharing it with all his classmates (since he doesn't know how to cover his coughs ... and licks everything).

On the bright side, one of the things that makes it easier to breath with croup is cold air. Fortunately, in Wisconsin this time of year, we have plenty of that. So he was bundled up this morning before 7 a.m. for a bike ride to start the day with a bit easier breathing. That's a win-win for him!

Look! I can bike and breathe!

Wednesday, November 8, 2017

Have Bike. Will Crash.

Teddy has been interested in bikes for a long time, including climbing on AJ's big boy bike with training wheels. He can pedal our tricycles for short spurts, but his feet fall off the pedals. We've had a pattern to adapt the foot pedals to better support his feet, but we never got around to actually making them. (My somewhat valid excuse is that we spend so much of our time Teddy proofing and supervising and repairing damage from Teddy that other projects get pushed to the backburner.)

So when I saw a room full of adapted bikes at Teddy's last appointment to get fitted for new braces, I inquired into how those are typically funded. I was surprised to learn that it is something that could be funded by Children's Long-Term Support Waiver (CLTSW). That's the county program that supports Teddy's additional needs above and beyond a typical child (with a parental cost share, of course). I e-mailed Teddy's case worker and received approval within 24  hours for the assessment for an adapted bicycle, which astounded me that it was that easy! (Apparently, it's not always that easy. The guy who did the adapted bike said that it's extremely rare for the process to move this quickly. When I spoke to Teddy's case worker yesterday, she said that she knew Teddy would benefit because Teddy and our family are so active.)

That means the highlight of today was picking up Teddy's new bike! This custom bicycle is designed for Teddy, so it fits him perfectly, yet will grow with him both as he develops more abilities and grows older.

He climbed right on and waited patiently for the adjustments.

It has a couple straps to help secure him in place to his backrest, which provides support for his core, so he doesn't have to work as hard to stay upright. The handlebar adjusts in height and gives him a wide, steady base for steering. Until he masters that concept (because he's a wild man now!), there's a guide bar in the front for someone to help Teddy when he needs assistance steering or is stuck and needs a boost. There's also a handle in the back for pushing, but the guide bar will be the main form of support until it's no longer needed. Then it can be removed.

Nice wide handle for steering, not that he intends to actually steer any time soon.

The pedals have a series of 3 straps to secure his feet in place, so he doesn't have to keep adjusting them to stay on the pedals. Perhaps the neatest part is that whenever the bike moves, the pedals move. That helps ingrain the reciprocal motion of medal into his muscle memory. Wait, there's a brake, so I can keep him still when I get him strapped in. That might be the coolest part.

Pure (blurry) joy at having his own bike!

That's the technical side of why an adapted bike is so great for him, but all you really need to see is this:

Tuesday, October 31, 2017

Treats Instead of Tricks

Happy Halloween! This has been the happiest Halloween I've had in the past several years. We started our morning with a Spooktacular Show presented by AJ and all his kindergarten peers. Their performances were just a joy to watch, particularly the expressions on AJ's faces throughout the songs. That kid has a personality all of his own. One of the nicest things about the program was that Teddy enjoyed it. He hung out contentedly in his Kimba Kruze the entire time, not attempting to escape or wander or express any concerns. I think he enjoyed all the music and costumes, and it was so nice to be able to watch and enjoy the entire performance without needing to occupy Teddy.

Dorothy and her tornado.

Teddy and I displayed our costumes at speech therapy, with me accompanying him as Dorothy. He was a tornado since he is a destructive force of nature. His costume held up the entire day without him destroying it, so perhaps I used the right amount of hot glue. His speech therapist loved his costume and completely understands why he was a tornado.

If you look closely, you should see a house in the tornado.

I also had the opportunity to help clean up at AJ's classroom party in the afternoon, which pretty much consisted of opening a few snacks and being in the picture when AJ's teacher took photos of each table of students. He asked, "Can my mom be in the picture?" So as all the other parents intentionally backed out of the way to avoid being in the pictures, I had to jump right in, minion costume and all. (I had switched costumes for the afternoon since Dorothy with no tornado wasn't as cool as being a minion.

The tornado is on the move! No stopping him!
The day ended with trick-or-treating with both boys. This year is noteworthy as the first year that Teddy walked to houses trick-or-treating. Although he was walking last year, he didn't have anywhere near the endurance or ability to navigate trick-or-treating. He did need to be carried for a bit this year, but he did awesome walking. Teddy thought it was really cool that we got to go up to everyone's houses, but he couldn't understand why we left so quickly without going inside at each house. He'd stand on the step staring at each person who went back inside instead of realizing we're supposed to move along to the next house. Guys, they opened the door to their house! We should go inside. It's rude to just leave like this!

LEGO Nexo Knight Clay (AJ) and Teddy the Tornado trick-or-treating.

It was a fantastic Halloween, with our boys thoroughly spoiled by our neighbors with special bags loaded with treats for them and happy family memories. And trick-or-treating is much more enjoyable when you have full stomachs versus hangry adults. (Lesson learned last year.)

Tuesday, October 24, 2017

Family Play to Learn Night

This post is tough to write, quite simply, because tonight was tough. I think the reason why is because expectations did not match reality.

Teddy's school had a Family Play to Learn Night that was billed as an opportunity to come explore his classroom with him with the opportunity to have a 20-minute slot to meet individually with his teacher. I had assumed it was open to everyone to come play and explore and then have some focused time to hear specifically about what Teddy does in the classroom.

So we arrived about 30 minutes before our scheduled time. The classroom was empty except for his teacher when we arrived, and she welcomed us. She said she could meet with us right away and that we didn't need to wait, which was nice because Teddy doesn't wait well.

When her opening statements were that the classroom was completely rearranged because of Teddy, that's when I realized this wasn't a night of family play. It was really his fall conference, without any of his therapists (who had attended all his conferences last year).

His teacher was pleasant and positive, emphasizing some of the progress that Teddy has made and adaptations that have helped him, but the message was still there that Teddy was the reason the room was rearranged, Teddy has a constant adult presence (which is largely the reason a second aide was added to the classroom) and that Teddy has been integrated into the traditional 4k classroom on limited occasions (instead of daily like some of his more advanced peers). Tack on the fact that Teddy typically arrives 5-10 minutes late because the bus is consistently late, which she said was not that big of deal because it was outside play time.

Honestly, him missing outside play time, which is his favorite thing, is a problem to me. It's even more of a problem to me because she said that recess is how the students in the traditional 4k class know Teddy ... if that's his only form of daily integration, why does he have to be shortchanged because the bus can't get him there on time every day?

His teacher said that even though it's only October that she's thinking ahead to next year. She approached the question of whether we were open to Teddy going to a different school that his home school (in a really tactful manner). I acknowledged that our hope is that both boys attend the same school, which is why we were trying to figure that out last spring already and were essentially told we'd look at kindergarten placement after 4k not all at once. At that same time, we were also told that students with needs similar to Teddy's have been successful at his home school.

Ugh, it just wasn't what I was expecting. I expected AJ and Teddy to get to play together and have some conversation about what his days looked like to hear his routines. Instead we got nearly an hour (and I truly appreciate that amount of time, I do) of the challenges and some of the possible solutions they're working to implement. I got the names of Teddy's OT and PT (for the first time!) and his aides. He's made progress, and there's definitely a desire to help Teddy succeed.  There was really a lot of good, but I wasn't mentally prepared for it and had tears running down my face as soon as we exited the school.

I think had I realized this was his conference for his progress report that we'll get in a few weeks, that I would have mentally approached it differently. I don't know what else to say other than my favorite verse, Romans 12:12.

Let your hope keep you joyful, be patient in your troubles and pray at all times.

Thursday, October 19, 2017

Teddy's First School Nurse Visit of the Year

I'm sure this won't be the only visit to the school nurse for him, but I hope it's the only one that I cause. Wait, that sounds wrong. I didn't cause Teddy's injury, but I did send him to school with a huge bump and fresh blood.

Around 11, as I was opening the fridge to get Teddy lunch, he fell onto the metal track of the sliding glass door. I'm not sure what specifically caused him to fall because ... again ... I was opening the fridge. He started crying, so I scooped him up, took a quick peak at his noggin and took him onto the deck to let his crying scare the geese out of our yard. (I don't like them pooping everywhere.) Being outside worked it's magic right away on Teddy, so he was over his injury within a minute or two and I still had geese in my yard.

When I set Teddy down to try this lunch thing again, that's when I noticed my  hand was red. He had about a 3/4-inch cut on his head, which hadn't started bleeding when I first looked. Thankfully, it wasn't gushing blood, so I was able to clean it with a clean cloth, rub on some antibiotic ointment and continue with lunch. I also gave him some Tylenol because that would hurt my head.

Fast forward 40 minutes to getting on the bus, and his head looked horrible. I felt guilty sending him, but he wasn't bleeding, he was acting completely normal and he would have been one unhappy kiddo if that bus passed by without him getting onto it. I did send a note to explain what happened to his teacher (and, of course, that was the one day that somehow his backpack never made it off the bus to go into school). I also called her to let her know that if the school nurse looked at it and felt it needed further attention, that I'd come pick him up.

I also called our doctor's office just to confirm there was nothing else I should have done ... as soon as he climbed on the bus. (Hey, there's only so many minutes before the bus arrives. Food and a clean diaper are pretty important.)

And that's his first school nurse visit. AJ's already racked up two, so Teddy maybe feels he needs to catch up.