Merry Christmas Eve

There's something nostalgic about trains at Christmas time. Whether it's the somewhat more recent Polar Express or the idea of a train around the Christmas tree, trains simply go with Santa. This year one of our gifts for Teddy was to head to the Mid-Continent Railroad in North Freedom, WI for the Santa Train. We did this in early December, and it was the perfect family adventure.

Teddy was so excited about this trip. Though he can't talk, he told everyone who came to our house about the train ride by showing them the brochure and pointing specifically to the Santa picture. This was for a couple months leading up to the adventure as we had the brochure on the fridge. 

The trip didn't disappoint for him, as he was so excited when we pulled into the train station. The only disappointment for him was that the museum had hardly any train cars you could climb on to explore, unlike the one we visited in Duluth earlier this summer. He thought he should be able to explore every car, even trying to sneak onto a few because that cord across the stairs is clearly not meant for him. 

The train ride itself was pretty darn perfect for us - about 1.5 hours with enough going on to keep Teddy mostly in his seat. As a parent, I appreciated that all that was advertised was a quick visit by Santa, so everything beyond that was a pleasant surprise. Santa started in our train car and made his way with Mrs. Claus to take pictures with every family and have a quick chat. Of course, Teddy invited them to sit down by him. 

All smiles for Santa and Mrs. Claus.

After Santa moved along, we heard a reading of T'was the Night Before Christmas and got little stockings with a few treats for the boys. Oh, we also got a rubber duck dressed as a conductor that Teddy thought was pretty cool. 

Showing off his rubber ducky.

The train only went a short distance down the line before it turns around, so we didn't cover a lot of ground, but it was very scenic. On the way back, just as Teddy was getting a bit squirrely, we had a group of high school students come into our train car to sing carols. Teddy thought that was the best to have a group of pretty girls (with a few guys, too) standing right by him, smiling and singing to him. His absolute favorite was Jingle Bells because he got bells to play through the song.

It was a truly wonderful experience, something we all could enjoy. Afterward we checked out a candy store on the way to our second main destination, Buffalo Phil's, a restaurant in Wisconsin Dells. We had wanted to check this place out for a few years due to two features: food delivered by trains and all the Lego displays. Let's just say neither disappointed for AJ, especially the entire Star Wars Lego room with nearly all the Lego Star Wars in existence. However, Teddy was freaked out.

Now, to be fair, eating in a restaurant with Teddy is usually a quick affair as he has no willingness to sit still for any amount of time, wants to socialize with others, etc. Sometimes he's just in a mood, slithering out of the booth and seeming to intentionally create chaos. This time, though, was different. Something he saw or experienced in the restaurant freaked him out, whether it was all the life-size characters or who knows what exactly. But after our drinks came and he went for a walk because he was a bit antsy and there was a lot to see, we could barely get him back in the booth. In fact, he and I stood by the booth just waiting to have our food come to put it in to-go boxes for him and Dave because all he wanted was to go back to the car. 

This type of thing is happening a bit more, where he gets genuinely freaked out and needs to leave someplace because it's simply too much for him. While it's frustrating to not be able to enjoy a restaurant we thought was about as close to a sure thing for our family as would exist (with the trains), it's understandable when it's truly fear versus just being sassy, so to speak. I wish we could figure out, though, what triggers these moments of freaking out to better navigate them.

Regardless, it was a fantastic family day and definitely something to repeat! We'll just skip that restaurant next time. 

All the Sicknesses

As usual, it's been much longer than intended between posts. To be fair, though, I feel like our household has been ill since mid-November. 

It started with a phone call that Teddy was suspected of pink eye and needed to be picked up from school the Friday before Thanksgiving. That required a visit to the walk-in clinic, of course, to get medication and clearance to go back to school. As an added bonus, we learned he actually had strep throat on top of the pink eye at that visit, so he got prescribed 2 different antibiotics. 

You'd think that would be enough to keep him healthy, but nope. We finalized our Thanksgiving plans at 6 p.m. Wednesday night before Thanksgiving, only to have Teddy start vomiting at 8 p.m. After 3 to 4 projectile vomiting sessions, with him completely miserable, Dave took him to the emergency room at 9 p.m. They celebrated (umm, probably wrong word choice) the start of Thanksgiving in the ER, getting home after 1 a.m. after getting fluids, IV anti-nausea meds after throwing up the oral ones and IV keppra. 

AJ and I managed to still visit my folks for Thanksgiving, while Dave and Teddy stayed home recovering. Seriously, who gets a 3rd illness while he's being treated for 2 other ones?!?!

That recovery didn't last long, though. We had perhaps a week where Teddy was feeling better before the respiratory illness started. After watching him lay on the floor just staring at us putting up the Christmas tree without causing any trouble or "helping" at all, we knew he was definitely not well. After seeing a temp over 100, along with the lethargy, we headed back to the walk-in clinic for visit #2 within 2 weeks or so. 

That visit prompted visit #2 to the ER because we got sent there instead due to his high fever, low oxygen, high pulse and high blood pressure. His temp was over 102 by the time we were in the ER (even after having Tylenol 30 to 60 minutes earlier), and he was miserable. They checked for all the viral illnesses (flu, RSV and COVID) along with a chest x-ray to look for pneumonia or bronchitis given the persistent string of illnesses. All that came back negative, so it was some other virus kicking his butt.

Walk-in and ER visits #2.

Thankfully he was through the worst of that in just a couple days, though I swear that cough and crud has lasted for more than 2 weeks still (with the rest of us getting some lesser variant). While we're sick of being sick, one of the biggest blessings is that despite all the illnesses, he had no seizures. That's tremendous, considering strep throat has kicked off wicked seizures, as has multiple illnesses at the same time. 

I'm also grateful that the time and effort I've put into therapy this year (particularly EMRD to process his 2 worst seizure episodes) really has made a difference. All these illnesses were the perfect test to see if my anxiety when he's ill improved, and it was a remarkable difference. While it's still no fun with sickness, especially with a non-verbal child who can't tell you how he feels and what hurts, the constant worry about seizures and worst-case scenarios wasn't there. 

So here's to hoping to finish the end of the year healthy and that the worst of our winter illnesses are behind us!

Diagnosis Day

Our lives changed forever 8 years ago. Teddy was diagnosed with PIGN-CDG, though at the appointment the name was Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1). Even though that name was a mouthful, I walked out of there with the name engrained in my brain ... apparently until this moment when I had to refresh my memory.

The diagnosis opened our world to amazing relationships through our PIGN family. We've met families across the country, shared tears and celebrated successes together. We've developed friendships with incredibly caring, accepting people from myTEAM Triumph. Either of these alone is life changing. 

Diagnosis Day 2015: So Little, So Cute

My goodness, he was so little. He was also so darn cute. This is when he thought he was worthy of being the doctor. This was also minutes before our lives changed. 

When we got his diagnosis, we were told he was the 15th in the world. It was overwhelming. That's why we have so much empathy for new families who are diagnosis. It may be 8 years, but we still remember exactly how it felt. 

We left that appointment with more questions than answers. We wouldn't even tell our families the name of the disorder because we didn't want them searching to find the 2 or 3 things that existed on Google. The reason for that is we didn't want them to see the life expectancy of 3 years when our son was already 2.5 years old. 

It took months to come to terms with this diagnosis. Honestly, it's still a journey because life with Teddy is a roller coaster. There's always going to be moments that bring all the feelings, which means we need to come to grips again and again with different aspects of his diagnosis. 

Diagnosis Day 8 Years Later: Not So Little, Still So Cute

But, hey, it's 8 years later. That 3-year-old life expectancy was blown out of the water (by Teddy and so many others with this diagnosis). We're so grateful for that! He's not so little, though I imagine in 8 years I'll look back at the pictures from today and think, "He was so little!" That passage of time is a blessing for which I'm always grateful. 

The photo from today is when Teddy thought he should have a sleepover with his grandparents. And gosh, he's still so cute! 

Life Keeps Us Busy

Life always seems to be busy, which is why there's some time between posts. Let's see what updates I have from the past several weeks ...

Broken Toe/Foot This healed well, thankfully! He got the all clear to spend some time barefoot at his final checkup. We were advised to have him wear his brace and shoe for most of the time to protect it through November to make sure it's fully healed. This was great news, though, because it allowed us to return to our own bed and allow him to sleep by himself for the first time in 2+ months.

School He loves school. He loves his friends, his teachers, gym, music, recess and pretty much everything about school except following directions or doing what he doesn't feel motivated to do. (Not that atypical for a child, now is it?) He got to venture to a wildlife preserve on a field trip the other week, and he was ecstatic to ride the bus!

Shoes Ugh. Buying shoes that fit over his AFOs is the worst. We've used Billy Shoes for several years, and we initially had really good success with them. But the last year, he's destroyed them almost faster than we can buy them ... certainly faster than we care to buy them. In fact, the last pair we got took less than 3 weeks for holes to be worn into them. We spent more than an hour trying on everything we could find (and suggested by the sales staff) but couldn't find anything traditional that fit over his AFO without looking like clown shoes. We finally ordered Friendly Voyage shoes, and we're optimistic. They seem to be good quality (as I'd hope they'd be for the price), and they fit on his feet like a dream. The only problem is we have to rig up something to ensure the zipper stays up because it tends to work its way open with all the movement Teddy makes, and he's stepped out of the shoe once. 

Halloween Teddy had a great Halloween, making up for missing last year due to COVID. He went to a fun Halloween party his friend hosted at a bouncy house and had a great time. We went to a neighborhood party, and he got to do the limbo and had so much fun, once he got over the different costumes. He went trick or treating as Handyman Hal and loved visiting everyone, plus getting candy. It's interesting because he won't let you carry his bag, and he's not the least bit coordinated, so everything spills everywhere. We resorted to frequently emptying his bag (after every house or two). Oh, he does not care for scary costumes at all. One house had someone dressed up as a decoration who then scared kids, and Teddy was done after that with anything that looked remotely scary or suspicious. 

And the final randomness in this post is that Teddy got a paint your own cookie to decorate (since his mom runs a bakery after all). Here's how it started:

There's already a bite out of it, but he's actually painting.

But within 2 minutes it evolved into this:

No further painting was done. Only eating.

Sedation Dentistry

If you recall, Teddy's first Monday without school this summer was a hit. Literally. As in he hit his face on a curb and chipped out his 2 front teeth. 

That resulted in a trip to our regular dentist, followed by another visit a month later when the swelling was gone to attempt to repair them with laughing gas. The idea that would work is downright laughable, so we ended up with a referral to a pediatric dentist who does sedation dentistry. That visit last month led to Teddy being scheduled for dental surgery today.

Dave will not let me change his name to Theodork.

Sedation dentistry is the only way we'll get this work done, and everyone seems to feel like it's the best way for him. Tell him that as we have to check in, go through all the questions and then try to get him to actually sit on the bed ... all while he is asking to leave and getting more and more agitated. The team asked if we could get him on the bed, which obviously we can because there's 2 of us and one of him, and we're still stronger. But I'm sure it was a bit comical because he acted like he was superglued into his chair and then proceeded to wriggle like the bed was electrified to get off it. So, yeah, that was not pleasant for any of us. 

That's when they realized he needs something different, which I thought I had already covered with them that he wasn't going to settle down until they started knocking him out. They asked about one of us going back with him because they thought that would be less traumatic than ketamine. False. It's far easier to give him one shot that forces his body to relax and allows us to settle him on the bed, so they can wheel him back and put him fully to sleep. 

Once we explained that, he got the shot and crawled back in his chair. Then I carried him to the bed, where he fought for one or two more minutes before the medicine hit his system, forcing him to relax. While it's unpleasant to see him like that, at the same time we know it causes the least trauma because we just need to get this over with as no amount of soothing is actually soothing to him.

So now he's back getting his front teeth capped, his back molars sealed, a thorough cleaning and x-rays done to make sure there's nothing else to address while he's snoozing. Then we'll see whether he's tired the rest of the day or whether he's back to his usual energy level of non-stop movement.

 And hopefully it's another 10 years before we need sedation dentistry again, though I know that's too much to dream. 

Chomp, Chomp, Chomp

Teddy's been in the school system for 7 years now, and this is the first year that he has a child who bites in his classroom. Given that Teddy's in a self-contained classroom, which means he's in a classroom with other high-need students who aren't in mainstream classrooms, it's not surprising that his classroom looks a bit different than other classrooms. It's not uncommon to have different behaviors (like Teddy's flop and drop or food stealing) like yelling, occasional hitting, clothes that leave the body and more. But most of those, aside from the hitting, don't actually cause harm to others. 

Teddy's been bitten 4 times in the first 3 weeks of school. He's become the main target because he has no personal space boundaries and doesn't realize other people have boundaries. The worst was getting the call last week Monday that he was bit again while he still had a giant bruise on his other arm from Friday's bite. So I spent much of my time during his therapy and at night laying with him while he fell asleep e-mailing and trying to advocate for additional resources. 

One of the latest bite marks.

Believe me when I say I'm fully supportive of his teacher and the small team that works in his classroom daily. In addition to trying to educate our children, they're also spending all their time redirecting and modeling appropriate social behaviors, not to mention trying to curb negative behaviors and ensure safety. It's almost laughable some of the suggestions that others in administration suggest for solutions. OK, I'll be honest, I might have chuckled and asked if they've actually spent time in Teddy's classroom. I was kidding, but I also realize that what might work well for many kids likely may not be the best interventions for kindergarten students with significant behavioral challenges. 

After e-mailing quite a few folks, and several discussions with his teacher, it sounds like they are pulling in a variety of resources to hopefully resolve the behaviors quickly to ensure safety in the classroom.

But I also firmly believe the underlying issue is inadequate staffing. I reached out to the Director of Special Education at the start of the school year when I realized there were 7 students in Teddy's classroom with only one teacher and 2 paraprofessionals. (We've advocated since early on to have 1:1 staffing for Teddy due to safety reasons, not to mention to meet his learning needs, and we've never made any headway with that.) To compensate for being short staffed with high-need kids, the best solution at the start of school was to place a practicum student in the classroom who's there about 50% of the time to be an extra body. At the start of school, the district was short 20 para-professionals, with at least one of those open roles in Teddy's classroom.

I don't know how many para roles are still open, but the one in Teddy's classroom still is, along with others in his school I believe. These roles are critical to students' success and safety. Right now it's next to impossible to hire people for roles like paras because there is such low unemployment in Wisconsin that gas stations and other entry-level roles can pay as much or more as caregiving roles and paraprofessional roles. Everywhere you go, you see now hiring signs. Seriously, I just did a search on career postings, and a gas station is starting at $15/hour and the Oshkosh School District paraprofessional role is posted at $15.48. 

So I've been advocating and reaching out to others in the district to see what is being done beyond the standard recruitment for these roles. I truly believe that unless they make changes to overall compensation that they will not fill these roles that are so critical in keeping our students safe and helping our students learn. Thus far I've learned that a comprehensive review of each paraprofessional job description is being done starting next month to evaluate roles, responsibilities and compensation. That's a starting point, but we need to do better as a community. We're failing all of our students when we can't fill these and other critical roles. 

It Took 10 Years ...

... but Teddy finally has his first broken bone. At least, the first one we've realized was broken because honestly, only God knows how many concussions he's had and if anything else ever was broken. I mean, there was the time we were certain he broke his nose, but that was just a ruptured cyst that resulted in a couple intense surgeries and some quality time with a good ENT doctor. 

Anyways, back to the current situation. A week ago Teddy was trying to load a 4x4 wooden post into the back of a UTV (think about as high as his head) when he dropped it on his bare foot. Dave carried him into the house screaming (Teddy, not Dave). He's not a big fan of ice packs (or bandaids), but we tried to apply ice, gave him Ibuprofen and snuggled him while we ate supper. He was still crying after supper, which meant it really hurt, so we headed to the walk-in clinic to get it checked. They did x-rays just in case, which went much smoother than I expected. Results were expected the next day due to the holiday.

The next morning he was limping, but he was walking on it (mostly walking on the side of his foot). So we knew it still hurt, but we figured it was just bruised. Nope, turns out the kid was walking on a fractured toe/foot. I say foot because the break is higher up in the toe bone, so it's what you'd consider the top of your foot in non-medical terms. The walk-in nurse who called with the results said to ice it (which he won't tolerate) and keep him non-weight bearing until he saw orthopedics. I believe I kindly informed her that without sedatives, there was no way to keep him from being weight bearing.

So the next day we sent him to school with a detailed note and his chair, noting that he'd still be walking and moving because we know Teddy but to please try to limit his activity and use his chair. We finally got his ortho visit scheduled for Friday (so 5 days after the incident) and confirmed with his primary care doctor that we could and should try to use the boot we borrowed from a neighbor. Up until that visit, while we tried to limit his activity as much as we could, he still proved he could walk, run and jump with a fractured toe. 

Fractured toe is not enough to slow down Teddy.

The irony is not lost on me that my last blog post was about saying farewell to our backpack carrier because less than 2 weeks later we had a child who was supposed to be not weight bearing. We used his 2 chairs that we have (one for transports at school and the bulkier fun chair at home before/after the bus). We put a trike in the house to encourage him to ride it rather than walk. And we carried him up the stairs every night and encouraged him to butt scoot down the stairs. So, the child carrier still would have been handy for the next 5 weeks in other words.

Ortho believes it's not completely broken all the way through and wants to have follow-up x-rays again in a week to be certain nothing's out of place. We discussed a cast but determined the boot or his AFO/shoe is sufficient, but he's not to bear any weight without that additional support. That means he's even supposed to wear it at night, which seems so darn miserable.

He's tolerating the boot really well, except for when he gets home from school and just wants it off. As long as he stays busy, he'll leave it alone. We also have tape to wrap it if needed, so he can't just remove the boot. Because we can't stand the thought of wearing the boot non-stop (and it does rub on his leg just because he never stops moving), Dave has been sleeping with him at night. That way we can forego the boot and just put it on right away when he wakes up before he starts moving around. 

It's still going to be a long 6 weeks (hopefully only that if all heals as expected), but at least we have one week done!