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.

Sunday, October 15, 2017

There's a Storm A'Brewing (aka Halloween Preparations)

I've been planning Teddy's Halloween costume for more than a year. Last year, we used his Kimba Kruze chair to get him around the neighborhood for trick-or-treating since walking required so much effort for him. He was cool enough as a hot air balloon, but I said that I wanted to make him into a tornado when he could walk.

He's such a destructive force of nature that it's only fitting. (My other idea I got this year was a pinball in a pinball machine after watching him bounce off the walls, doors and people at AJ's school's pumpkin walk last night.) Since it's so fitting, I remembered my idea this year and put together his costume in less than an hour.

The irony of the fact that he'll likely destroy this costume the first time he wears it is not lost on me ... despite the oodles of hot glue holding it together and cars strategically placed where he wouldn't notice them immediately.

He's a force of nature to be reckoned with ... that's for sure. I'm just hoping this costume holds up through the afternoon at school that he can wear it again trick-or-treating in the evening without needing to do too much repair.

Now, the question is whether I am ambitious enough to go as Dorothy.

Monday, October 9, 2017

I Can Dance If I Want To ...

Ah we can dance if we want to, we can leave your friends behind
Cause your friends don't dance and if they don't dance
Well they're are no friends of mine
I say, we can go where we want to ...

That last line is certainly true when it pertains to Teddy and the dance floor. We attended a wedding reception this weekend, and both boys were extremely excited to hit the dance floor. AJ has dance moves I'm not quite sure that I've ever seen before in my life as well as near perfect renditions of others I never expected to see my child perform, such as running across the dance floor and dropping to his knees to slide across it or learning the Cupid Shuffle in one night when I haven't mastered it after all these years.

Teddy's dance style is a bit less refined. It involves a lot of face-paced walking around the dance floor, using other people as bumpers to redirect him. Hey, look at this pretty, sparkling white dress! I should touch that! He did some foot stomping and quite a bit of upper body shaking and swaying, complete with holding onto his shirt while he danced. He was rather intrigued by the stage where the DJ was, so we had to provide some redirection there. He was also interested in the photo booth (until we went to actually take photos, which is when he wanted to return to the dance floor). And the garland around the dance floor was rearranged a few times. Hey, I should hold onto this while I dance. Oh, it comes with me? Cool.

I watched with a mixture of pure enjoyment at their happiness and amazement at how far Teddy has come in roughly the year since the last wedding we attended. Then, Teddy needed significant handheld assistance to walk, was carried a portion of the night and spent most of the night walking around the DJ booth because he was fascinated by the lights there.

This time, Teddy could go where he wanted and do what he wanted, as much as we would allow him. Seriously, the child made a beeline for the dance floor every time he could. Sorry, but you're not the groom or mother of the groom. Nope, not the bride or father of the bride either.

Teddy had an absolute blast and was in his element, surrounded by people, movement, lights and music. Oh, and cupcakes. ;-)

Friday, October 6, 2017

Integrated Play

Teddy's class consists of 5 other children who need the additional support that a traditional classroom, or even an integrated one, doesn't provide. Yet the intention is still to provide opportunities for Teddy and his classmates to integrate into the traditional 4K class across the hall.

Today Teddy's teacher sent a text, "Look who integrated in 4K during play today!"

He had to check out the tools.

He played with trucks.

A rare moment of Teddy sitting still.
I appreciate that Teddy's teacher sent these pictures. I am grateful Teddy has the opportunity to play with other children his age because he loves being around people. Yet I still can't deny there's a part of me that wishes it wasn't a notable thing that he played in the traditional classroom. Hopefully these kiddos come to know Teddy well enough to be excited when he joins them.

Wednesday, October 4, 2017

Patriotic Teddy

Two days ago, Teddy went to school looking very patriotic. He was, quite literally, red, white and blue:

The red is quite obvious Blue was on his hands, so you can see a bit peeking through around the drill.
We had an appointment 30 minutes away to pick up his new braces, shoes and compression shorts and shirt. He was agreeable for that and downright excited when he got to try out adapted bicycles (more on that when it arrives ... he got approved today!). But when we got in the car to head home, the screaming started.

And it continued for about 20 minutes of tired, crabby Teddy who wanted nothing to do with any snack or drink I offered him. When he found AJ's zipper pockets, he finally settled down. That's because he was happily coloring ... himself. He colored his hands blue and his face (and half the back of his head) red. He even managed to color inside his ear.

Needless to say, the screaming resumed when I pulled off the highway to take away all the markers. As soon as we got home, I put him down for a nap and spent a good 10 minutes picking up all the markers, crayons and other drawing utensils from my car. Amazingly, Teddy fell asleep right away. Apparently the combination of the very tail end of a cold and ear infections in both ears and a lack of sleep for the last week finally caught up with him enough to take a mid-day siesta (as opposed to his stylish look of black bags under his eyes this past weekend).

I woke him up 25 minutes before his bus arrived and proceeded to change him out of his new compression clothes (since his classroom would be in the 80s that day), which meant completely undressing and redressing him, including his braces and shoes. I also had to change him and write a quick note to update his teacher on those two ear infections. Oh, and I had to feed him lunch, which was the most challenging aspect because it's hard to feed a child who's screaming because he's still waking up.

We finished his lunch with me chasing his shirtless self around around our driveway, holding bites of food in one of my hands and a Kleenex in the other. When the bus turned onto our road, I did one last nose wipe and pulled his shirt on him.

Needless to say, that 25 minutes did not include any time for washing the marker off him. So that is why Teddy went to school wearing red, white and blue. (He's my child, so he's inherently pasty white.)

Sunday, October 1, 2017

Feel The Burn!

No, this isn't about every muscle in my body (although it could be after this last week with my successful attempts to finish a running scavenger hunt). It's about the fact that Teddy's arm has what appears to be a burn mark.

I say appears because we don't know exactly when it happened, but we have a pretty good guess. He's extremely interested in just about everything, including the grill, and is mighty fast in transitioning from happily playing somewhere to being somewhere else without warning. As we were grilling lunch, we thought he only touched the handle of the grill before we redirected him. (That's my polite way of saying that we ran toward the grill and pulled him away while shouting "No!")

Apparently his arm also touched where the grill was hot, hot enough to leave a burn mark on his arm. We didn't put cool water on it right away or burn cream because we didn't know he was hurt until several hours later. He spent the afternoon playing at the Children's Museum with his babysitter and brother, and we noticed the mark when we were doing bathes tonight.

These are the moments that I feel like a horrible parent who failed her child. It's not just because I couldn't keep him safe but because I couldn't make him feel better and fix the wound. I hate that I don't know he's hurt until after the fact.

This is one of those situations where his lack of communication skills and incredibly high pain threshold work against him. I'm not sure whether the pain registered enough, but we didn't see some form of communication from him because we were distracted by trying to ensure his safety. Or, it's possible the pain didn't register for him because of how his brain processes.

Regardless, it makes me feel like a cruddy parent and serves as a reminder that:

1. He needs even closer supervision (as in he's probably only safe if we're carrying him and then he's likely to hurt both of us).

2. We really need to get in the habit of checking his body routinely for marks, skin breakdown or other signs of injury or illness.

Monday, September 25, 2017

Race Weekends are the Best!

A year ago was Teddy's first race with myTEAM Triumph (MTT). Since then, he's crossed the finish line 5 times with angels by his side, including the Fox Cities 5k this weekend. Although he was still plenty distracted by the cheering crowds of people, it's amazing to me how much his walking has improved throughout the past year. He also has become well known among MTT where so many people know him. He can get away with just about anything because he has them wrapped around  his finger.

Case in point, there were three big motorcycles by the MTT group that immediately caught Teddy's eye. When I told him that they weren't his motorcycles and that he couldn't ride them, one manly biker said, "Oh, yes he can. He can ride on the gray one." So Teddy (and AJ) spent some quality time driving a motorcycle both before and after the race.

Teddy and AJ both enjoyed riding the chopper.

As much as I loved that, I loved even more that three rough and tough bikers were angels for a first-time captain who couldn't communicate verbally and needed assistance drinking her juice. They took amazing care of her and made sure she had an awesome time, including getting the local police department to flip on the lights and sirens for her. One of them said, "We may be fat and we may be slow, but we sure know how to have fun!" Those type of moments are what make MTT so special for everyone.

Team Teddy is all smiles at the Fox Cities 5K!
Another example of Teddy having people wrapped around his fingers it that not only did he get to explore the back of the MTT truck, which he loves, he also got to "drive" the truck. He honked the horn with his head when he was trying to press on the gas ... that child!

Teddy is ready to drive the MTT transport truck!
Teddy crossed the finish line with his Aunt Lindsay and Uncle John (who ran despite the heat and injuries). He also had an angel named Kevin, who jumped in at the last minute when more angels were needed. Kevin was a great sport keeping our pace and causing my brother to tell him there were support groups to help people like him ... because he's already ran marathons in 18 different states. One of the neat things was we discovered Kevin had been in a costume the night before at the kid's run ... and we have AJ's picture with him!
Kevin & AJ from the Kid's Run, which Teddy also did.
Kevin also was volunteering on the half marathon course the next day and told us he'd be wearing a T-rex costume. I guided Kevin across the group of runners, so my MTT team could get our picture with Kevin in costume. So Kevin was a key part of our weekend whether in or out of costume.

Kevin with Team Tom for the half marathon.
I always say I don't know how the next race will be able to top the previous with MTT because it seems like each race is so special in its own way. All I know is that I'm so grateful our family is a part of this organization!

Friday, September 22, 2017

We Have The Best Sitters

We've had our share of really bad experiences with daycare, but we've also found some of the most amazing people to spend time with our children. Yesterday, I was reminded of that because of texts from 4 different sitters for our boys. (Hey, it takes a village to raise a child like Teddy!)

The first was in response to me sending a thank you text to our newest sitter. On her third day with us, she searched under our cabinets to find our cleaning supplies and scrubbed our kitchen sink. Without being asked. When I thanked her, her reply text was, "Of course! If there's anything you want me to clean just let me know! Or write a list because I'm more than willing to. :-)"

She's pure gold. She's not allowed to graduate next May.

The next series came from the sitter who was watching Teddy at the moment. He had woken up at 4:45 a.m. and was pretty tired, so she tried twice to put him down for a nap. She said it was mostly quiet, so she thought he was at least resting. I checked the camera in his room and discovered him playing with a frog in his closet and sent her the picture. She said she counted that as a win for the morning (I would, too!) and followed it up with this:

I think play time with Mr. Frog made everything better.

This is someone who graduated and works full time as a nurse, yet still watches the boys on some of her days off. I'm so glad she's willing and able to continue that relationship with the boys and will take it as long as we can.

The third text came from Teddy's first (and AJ's second sitter) in Green Bay. We had mailed her pictures of the boys, and she thanked me for the pictures and said how much she misses them. This is the sitter who we'd still be using if we hadn't moved to Oshkosh, but she's helped us out many times and will text me to see when she can watch the boys.

The last texts came from the other student who had the nerve to graduate and move to a different town to work as a nurse after being with us for 2 years. She's going to be back in town this weekend and wanted to know if we'd be around to visit with the boys. Once again, I'm grateful she wants to continue to be a part of their lives.

We kissed our share of toads, but we found 4 princes. Wait, that makes no sense ...

Sunday, September 17, 2017

Through the Eyes of Other Children

In the last couple days, the neighborhood kids discovered that we have the "coolest basement ever!" That's their description, not mine. This means that we've had the neighborhood children constantly in our house or backyard or all the children playing in the cul de sac.

That also means that today alone I had conversations with two different children regarding Teddy. The 9-year-old boy asked me if Teddy was learning to talk yet. My response was he didn't have words yet, but that he has his own ways to let us know what he wants. I gave the example of Teddy coming by us meaning he wants to play with us and be included ... and then the conversation ended as I chased Teddy in the opposite direction.

Then the 6-year-old girl was swinging on our tire swing with Teddy. She told me she has a lazy boy in her class who's just like Teddy. I asked if that boy talked, and she said he didn't talk at all. She said she didn't know why he didn't talk. I explained that some things were easy for some people and hard for other people. I said we're all good at different things and said Teddy's really good at climbing.

It's interesting to hear their perceptions and their questions, and I try my best to answer honestly but positively because Teddy does have so many strengths. And I know adults have the same questions ... two of our adult neighbors have asked in the last month or so if Teddy will ever learn to talk. My response the first time was, "That's hard to say ..." and followed that up with a more detailed explanation that some of the children with his diagnosis use communication devices, a few words and some signs.

The reality is it is hard to say because I believe Teddy will never have the full range of communication that I would love for him to have. As a communication major, newspaper editor and someone who finds great comfort and clarity in writing, I have a child who fits the label of non-verbal currently. I have no doubt he will continue to find ways to express himself, but I'll never know all that roams through that mind of his. He's 4 ... and I've never heard Teddy speak the words "I love you." Don't get me wrong, I've seen Teddy say I love you. He says it with his smile, the way he lights up when there's that connection and the (often painful) dive into you. But part of me still wants to hear those words.

And as much as I want to hear those words, I want to be able to understand him. I want to know what he knows. I want him to have a voice to express himself.

Until then, I'll do my best to interpret and speak for Teddy. And AJ will continue to speak for Teddy using his "Teddy voice."

The footnote I have to add, as I sit here in tears, is remembering what happened when Teddy and I were in the neighbor's driveway as the kids played together in the cul de sac. The little girl who turns 5 next week awkwardly was trying to ride our Ziggle while pulling a tricycle behind her. I chuckled at the sight, and her dad asked what she was doing. Her response, "I'm bringing Teddy his tricycle." Although the children often get caught up in their play and forget to wait, include or allow Teddy to play with them, she very intentionally dragged a tricycle all the way over to include Teddy. 

Thursday, September 14, 2017

Runs, Parks and Tired Children

Teddy's spent more time running with me in the past couple weeks than he probably had the past couple years (at least outside of myTEAM Triumph training runs and events). I've realized that when I only have Teddy that we can sneak in quick runs. Well, not necessarily quick but shorter ones, around 3 miles or so. We've been making the most of this time before school rather than simply counting down the minutes until the bus arrives (me) or destroying everything in sight (Teddy). On a related note, guess which 4-year-old is tall enough to reach our microwave ... that's up on the shelf above our counter.

This morning we headed out for a run at Menominee Park. It was a gorgeous, foggy morning to run. We cut the route a bit shorter because the peninsula had a bus full of children on it, so we opted to skip it this time. Teddy threw his partially eaten apple on the ground, which I then stepped on and left in the parking lot where it was smashed. We saw plenty of geese, ducks and people walking dogs. Some random guy on a his bicycle told me I was doing great after passing me (and Teddy stopped complaining because he had a bicycle to watch).

He was pretty excited, despite having the park to himself at first.

Our run ended at the playground, where Teddy had a blast wandering around checking out things at his pace. It amazes me how much he can explore and do that he couldn't a year ago.

This is how Teddy tried to climb up to the slide. Perfectly safe.

After some fun in the park, we headed home where he refused to nap (yet again) and was tired and crabby until I took him outside. He took off running toward the bus when he saw it coming down the road because he was so excited to go to school. (I know that feeling. I'm really excited for him, too.)

And why tired children, not child? Oh, that would be because AJ was up at 4:03 a.m. (I checked my watch.) He was too excited to finish building his LEGO set he got yesterday as an early birthday present from his running buddy. He managed to wait until 5 a.m. before coming back to tell me that he really couldn't fall asleep ... after thumping around in the bathroom, playing and getting dressed.

Friday, September 8, 2017

First Day of 4K

Tuesday was Teddy's first day in 4K. He's in the Intentional 4K class, which means he's with 5 other children with significant needs. His class is right across the hall from a traditional 4K class, so Teddy and his classmates will be integrated as appropriate into the traditional classroom. Teddy loved his meet and greet with his teacher and speech therapist, who happens to be Teddy's first male teacher/therapist. (His PT and OT haven't been assigned yet.) He was extremely eager to go explore his school on the first day of school, willingly taking his teacher's hand and walking off to see what fun he could find.

Hey, Mom, there's people over there!

It makes it easier for me that he's so excited for school. I told his morning bus driver and aide that they'd be hard pressed to find someone more excited to see them than Teddy will be every day because they drive the bus, which he loves. I think he's already won over both sets of bus drivers and aides ... and hasn't had the screaming episodes (yet) that happened last year.

This couldn't have happened  last year. He's made so much progress!
He's had a great first week, despite being tired each morning and exhausted most evenings. Hopefully he'll figure out to either take a nap in the morning, which he did one day, or to enjoy sleeping in since his bus doesn't come until 11:40.

Look how fun it is inside there!
The only downside to Teddy's first day of school, aside from the bus fiascos, was that I learned that evening that someone made fun of Teddy. Now, I recognize all children will be picked on ... but that's still not fun as a parent. As a child with special needs, I know it will happen more often to Teddy than other children. The extremely positive aspect is that one of Teddy's friends (and my goddaughter) goes to the same school, and she stood up for Teddy when the other child made fun of him. That's not an easy thing for a 4th grader to do, especially when it was another friend of hers doing the teasing. I'm extremely proud of her, and I also love that she gave Teddy a hug on his first day of school.

Now, once our new sitter starts Monday, my anxiety levels should go back to normal ... as if I'm normal. 

Tuesday, August 29, 2017

He Has The Best Smile

Our boys start school next Tuesday. Yesterday, we finally got the postcards in the mail with the information from the bus company stating what time the bus will arrive in the morning. We even got 3 postcards ... per child ... with the same information just to make sure we knew when the bus was coming apparently.

Unfortunately, I was on the  phone with the bus company this morning explaining that neither child is attending the school where the bus planned to transport them. I confirmed that AJ was going to kindergarten at the school closest to our house and that Teddy was going to afternoon 4k (so a 7 a.m. pickup time would be an awfully long ride) across town. The lady said, "Well, he went to Traeger last year, didn't he?" I responded that he did. She then said she rode the bus home with him one afternoon and remembered him. She said, "He has the best smile!"

Even sideways, it's a pretty recognizable smile. :-)

That made me smile, despite the fact that I still have no idea when the buses will arrive to pick up or deliver my children. It's a good thing that Teddy's smile carries so much meaning that people remember it months later from a single encounter.

I kindly reminded her that Teddy requires a 5-point harness, unless the bus driver would like Teddy to assist with driving the bus. Then I asked if I could expect a return call to know pickup and return times for the updated bus routes. She said that yes, they'd try to get that to me by the end of the week.

Great. School starts Tuesday. Monday is a holiday. I'm good at being patient.

I guess I'll call again Thursday and see if the next person knows that Teddy has the best smile.

Sunday, August 27, 2017

A Few More Vacation Photos

As promised, here's a few more vacation pictures ...

Teddy absolutely loved exploring the lava caves at Crater of the Moon.

Hiking in the rain. Teddy ripped off our poncho ... and shredded it. I got wet. And I got to carry Teddy.

One of our best family photos of the vacation at Yellowstone Canyon.

Checking out the fumaroles. AJ loved all the geologic formations.

It's safe. Dave is holding Teddy in place with one hand.

AJ and I doing muscle poses to photo bomb Ted.

Best brothers ever (in Badlands National Park).

Wednesday, August 23, 2017

Back-to-School Stress

The morning radio show yesterday shared the top three stress points for parents regarding children heading back to school. They were, in no particular order, waking children up for school, helping with homework and packing lunches. Then they opened it up to listeners to share their biggest stress points ... and my mind went through my list of questions and fears.

Let's start with the fact that Teddy is not able to communicate, verbally or otherwise, what happens to him at school. He's going to a brand new school with likely a brand new team of therapists (that won't be determined until after school starts) where he knows no one. (OK, that's not true. I discovered last week my goddaughter and her cousin go to the same school, but they are in much older grades and likely won't cross paths often, if ever.)

That means that if something horrible happens to him, I won't know unless someone tells me. That means that if he has a miserable day, I won't know unless someone tells me. That means that if someone makes fun of him, I won't know. That means I will have no idea how he spends his day, what he does in therapy and whether he's enjoying himself and making progress ... again, unless someone tells me. That means I won't know when he does something amazing or makes someone's day with his mega-watt Teddy grin ... unless someone tells me. I won't know who his friends are or if he even is friends with his classmates. I'll know nothing unless someone tells me.

I know I can work with his team to get regular communication and key updates, but just think of all the little things children tell their parents about their days that I never get to know. And now that I'm in tears, I'll move on with my laundry list of stress points in a handy bullet point list:
  • Teddy had a horrid time with his bus rides home from school last year for the first two weeks, screaming hysterically the entire ride home. At least I could get a report from AJ about what happened because I felt like neither the bus driver nor the aide were willing to speak to me or even make eye contact when I helped a sobbing Teddy off the bus day after day. I really don't want to repeat that experience, especially since there's no AJ riding the bus with Teddy this year.
  • I worry about Teddy being picked on. I know he will be. I know kids will stare, laugh, point and do far worse things because he is different than them.
  • I don't want AJ being picked on because of Teddy ... or AJ hearing other children making fun of his brother. I know both will happen, probably not this year at school but still on my list.
  • I realized that Teddy is one of the 11 most profoundly disabled children in his age bracket in the entire school district. One of 11. And given what I know about his class last year, I'm going to go on a limb and guess he's one of the 5 most profoundly disabled children in his age bracket. This was somehow an epiphany to me despite being with Teddy much of my days, taking him to therapy and knowing his strengths and challenges. Somehow, it never occurred to me in that context until this week. Most of the time, when I'm not stressing about school, Teddy is just Teddy and that's perfectly normal.
  • Then I wonder how on earth our home school, where AJ is going this year, will accommodate Teddy next year? I can't even picture what that looks like because Teddy is at such a different skill set than other children his age. 
  • Then I worry about Teddy and AJ being at different schools and all the additional questions and stress points that come along with that topic.
  • The next illogical step for me somehow jumps all the way to Teddy moving into the adult service world and living in a group home because I'm afraid he'll require that high of level of care ... and feeling like a horrible parent for contemplating placing my child outside our home and wondering if group homes will still exist or if we'll move backward as a society to institutional care because it's cheaper and blah blah blah.
That, my friends, is my short list of back-to-school stress points. Oh, and I still have to figure out whether AJ is taking hot lunch or packing lunches. 

Thursday, August 17, 2017

Vacation - 3 Weeks of Memories to Last a Lifetime

We've only been home from vacation 3 days, and we're already in the swing of things with work, back-to-school preparations and childcare issues. But that can all wait for another day (even my anxiousness about school for Teddy, which I think is going to be an annual tradition ... and even our sitter giving her 2-week notice this morning). This blog post is a recap of our adventures on vacation.

This is Teddy scaling the sign at his namesake park: Theodore Roosevelt National Park.

When you take children who are 4 and 5 on vacation, you expect there will be stressful moments. It doesn't mean you like them, but you at least know they're coming when you spend 3 weeks together covering nearly 6,400 miles. Some of those stressful moments included Teddy deciding he didn't want to sleep (which was only really bad 2 out of 25 nights), Teddy screaming in the car because he was miserable (although I think there were fewer hours of screaming than on previous trips) and the second half of that 7-mile hike with all the pesky bugs and heavy children to carry (which was the only hike where AJ was carried for any significant portion ... after he earned a ride down by hiking up more than 1,000 feet over 3.5 miles).

Funny story: I almost pushed Teddy off this bridge. Oops.

With that said, this was honestly the least stressful and easiest trip since we've had two children. Now, if you weren't Dave and I, I'm sure you'd think we're crazy. When I compare the amount of assistance Teddy needs to previous years, that alone makes the trips easier. Yes, he's much harder to change and he's much, much heavier than the earlier years. But he can feed himself (at least in the vehicle), drink by  himself, sooth himself with a pacifier and pick up toys that he wants (using his feet, oddly enough, this year).

The biggest reason this trip was easier was that AJ hiked like a champ. He did nearly a 5-mile hike, which is his longest hike ever. He also did several other hikes up and down the side of a mountain. We discovered the trick to eliminating complaints is to get him focused on pretend play, which means Dave especially played a lot of LEGO Nexo Knights.

This snowfield was legitimately the hiking trail. I love this kind of stuff!

This trip took care of Dave and I visiting the last of the National Parks together in the lower 48 states. We've been to 48 parks, with only parks left to visit in America Samoa, Hawaii and Alaska ... all of which will be rather challenging and expensive with children. In the past 3 years, our boys have been fortunate enough to touch their toes in both the Atlantic and Pacific Oceans (3 times for the Pacific). They've traveled more of our country than many adults will in their entire lifetimes. And they have memories that will last them a lifetime.

Best dad ever. And Teddy love the ocean. He tried to wander into it every chance he got.
To give you an idea of our vacation, we visited:
  • Theodore Roosevelt National Park
  • Glacier National Park
  • North Cascades National Park  
  • Olympic National Park
  • Mount Ranier National Park
  • Grand Tetons National Park
  • Yellowstone National Park
  • Badlands National Park
In addition to that, there were 5 other sites within the National Park System that we visited. We visited one service shop to address warning lights/messages in our vehicle. We arranged for a friend to overnight my medication that I forgot, along with all my morning stuff. We spent 13 nights in our tent. Well, technically Teddy is the only one who spent 13 nights in the tent. The rest of us each spent one night sleeping under the stars in our hammock.

The way I look at it is that there will always be tears and stressful moments at home ... it's much easier to cope with them when I'm spending time in our national parks. These pictures don't even capture a handful of our adventures, so I might have to do another post of photo highlights. I'll leave you with this random photo that has nothing to do with Teddy or our family, aside from our hypothesis.

We're certain these are the inspiration for the Truffala Trees in The Lorax by Dr. Seuess.

Sunday, August 6, 2017

Vacation Update

The posts here have been lacking because we haven't had much cell reception, much less Internet connectivity. That's one of the things I love about vacation is that we get to disconnect from world by exploring wonders of nature and beauty. We're more than two weeks into vacation and still have a solid week left, so this might be the last post for another week or so.

In the past two weeks, we've explored:
  • Teddy Roosevelt National Park
  • Glacier National Park
  • North Cascades National Park
  • Olympic National Park
  • Mount Ranier National Park
  • Mount St. Helens
  • Columbia River Gorge, including the Bonneville Dam
A few things to note from this vacation:

Teddy and I got chased by a marmot in Olympic National Park. Another marmot didn't want to share his tasty wildflowers, so he chased his friend away. I happened to be in the way, with Teddy on my back. Marmots looked a lot less cute after being chased by one.

Cute ... until it's running right at you loaded down with a 40+ lb. child.
It hit me that Teddy won't participate in the typical Junior Ranger programs, the way AJ does. AJ looks forward to the activity books, collecting his badges and reciting his oaths. He's even been pretend playing Junior Ranger, which I love. But I had tears in my eyes at Glacier when I realized Teddy won't have the skills to complete Junior Ranger programs independently, even if he ever develops the interest and attention span. That hurts because it's been so much fun for AJ to participate ... AJ even did one activity book for him and Teddy to get Teddy a separate badge. It was so sweet yet bittersweet.

If you think hammocks are relaxing, try one with my two boys.
Teddy is heavy. 

This child loves the ocean. And bending into weird positions on his dad's shoulders.

Our national parks are beautiful. I love sharing them with our children.

There's nothing quite like an alpine lake. Well worth the hike. 

Saturday, July 29, 2017

Vacation-Anything But Relaxing

The vacations my husband and I took before children were not most people's idea of vacation. We're not beach people. We're not pool people. We're national park people. And we're not drive through and see the sights people. We're the hike everywhere, scoff at the moderate and strenuous ratings and see how much less time it takes us than the stated times people. (OK, that last part might be me.)

With kids, we traded or backpacks to carry stuff for several days of camping for ones that carry kids. Let me tell you something, kids wiggle a lot more. My pack never pulled my hair or adjusted my hat a million times before kids. It's not easy to hike with 45+ pounds of child on your back, but we still do it.

AJ has managed his longest hike on this trip: 4.6 miles up and back to a mountain lake. He also hiked 3.5 miles up the side of a mountain yesterday with 38 switchbacks and 1,500 feet of elevation gain. That earned him a free ride down the mountain on my back. Let me tell you, 5.5 miles of caring kiddos up and down a mountain is exhausting.

The good news is that AJ is getting older and more capable of hiking on his own. The bad news is Teddy is getting older and heavier to carry. Hopefully it balances out the next few years that Dave and I can split carrying Teddy without needing to give AJ rides, so we can continue to explore our great outdoors to the fullest extent.

But I think the rest of the family might need some horseback lessons because I see that as it future once we can no longer carry Teddy on hikes.

Hey, let's hike up a mountain like that!

Thursday, July 20, 2017

Happy Birthday with an F-Bomb

We received Teddy's diagnosis when he was around 2 1/2 years old, after nearly two years of searching for answers from his first seizures. Along with that diagnosis, we received 2-3 medical research documents that were literally all that was known and documented about the disorder in the medical community. One of those, from the National Institute of Health, read:

Multiple congenital anomalies-hypotonia-seizures syndrome 1 (MCAHS1): An autosomal recessive disorder characterized by neonatal hypotonia, lack of psychomotor development, seizures, dysmorphic features, and variable congenital anomalies involving the cardiac, urinary, and gastrointestinal systems. Most affected individuals die before 3 years of age.

Talk about a kick in the stomach to read that when your child is 2 1/2. Our first questions back to our geneticist surrounded that life expectancy. This is the answer we received:

I do not think we have any reason to believe that this syndrome would have an impact on Teddy's life expectancy. He is overall doing extremely well, and his seizures are in good control with the Keppra. There are a very small number of patients who are known with this condition, but certainly a good number of them are older than age 3. We also do not know what the cause of death was in the individual/s who passed away at age 3 or what other complications/medical problems they had. I will investigate further and let you know if I learn anything further about this.

I'm grateful our genetic counselor provided this answer, which seemed both realistic and optimistic. I've heard horror stories of parents who were told their child would never live, walk, talk or reach a variety of milestones. We've never encountered that personally from any doctors, yet we had it printed in black and white. And, you know it must be true if you find it online ... especially when it was one of three valid search results for Teddy's diagnosis. (Yes, when Teddy was diagnosed, even Google had little to no answers for us. Seriously, three search results. When was the last time you searched for something Google couldn't find?)

Teddy takes the saying Your presence is present enough quite literally.
So, this is a rather lengthy way to say, "F-ck you!" to the medical research we received in November 2015. And happy 4th birthday to my favorite Teddy in the whole wide world.

Tuesday, July 18, 2017

One of the Reasons Why I Love MTT

I know I continue to write about MyTEAM Triumph, but the organization and people associated with it have become part of our lives. If you're curious why, here's just a few of the reasons:

  1. Teddy, and all the other captains and angels, are welcomed with open arms and are accepted for who they are.
  2. The other parents of captains get it. Last night I showed someone the Yi Home Camera we use in Teddy's bedroom. She said that his bedroom setup looks identical to her son's bedroom. That's not so often the case when your child's bed consists of a large mattress directly on the floor. 
  3. Teddy loves the trailers and trucks that hold all the racing chairs.
  4. Someone shut his vehicle doors because he said, "I know Teddy well enough to know it isn't fair to him to leave my doors open." They understand Teddy's desire to explore, are comfortable with it and help me limit the temptations for him.  
  5. Teddy loves the racing bicycle.
  6. Every time one of the women sees Teddy, she scoops him up for a hug or lets him climb in her lap. She's even sat on the ground, so she could hug him when there wasn't a different place to sit. 
  7. It's safe. Not in the sense that Teddy couldn't get hurt somehow because he's Teddy. But we won't be judged for any of Teddy's non-typical behaviors (like licking everything).
  8. Teddy loves pushing the other captains.
  9.  There's a woman there who adores Teddy, and the feeling is mutual. She scoops him up for big hugs, twirls him around and occupies him while I chat with other people.
I'm sure I'll continue to share our MTT stories in the future, but I'll leave you with these pictures someone shared from last night's run, along with their captions from Facebook:

 Omg I seriously love captain teddy. Kerry Blondheim ur son smile is just amazing

 Love ur sons adventerous soul

Monday, July 17, 2017

Birthday Shopping is Hard ... Birthday Partnies are Fun

Birthday shopping for Teddy is one of my least favorite things to do. When I told my mom this, she laughed, until I explained. It's not that Teddy is hard to buy presents for because he enjoys a number of things and likes to play with toys. It's not even that there's nothing Teddy needs because he tears through clothes like no other, and most toys help him so much more than a typical kid with furthering his skills.

Happy birthday boy opening his presents.

It's that buying a birthday present serves as a stark reminder of where Teddy is not. Rarely would any of the toys appropriate for his actual age be appropriate or of interest to him. The things he would like are geared toward a much younger age group. Dave and I used respite last year to go searching for something for his birthday, and I ended up fighting back tears as we left Toys R Us with a single baby toy. This year I went to two toy stores after work, with a specific type of lacing toy in mind, so I thought it wouldn't be bad. I left the one store disappointed they didn't carry something like what I wanted. I left Toys R Us with a bit of extra moisture in my eyes but with a different toy that I thought Teddy would enjoy. Maybe I'm just allergic to Toys R Us.

Birthday shopping is the worst. It's because it's the time to buy presents for Teddy that correlates to his age. Don't get me wrong ... Teddy turning 4 is a whole positive, remarkable blog post in its own for later this week. Birthday shopping is what sucks.

But  his birthday party didn't. Because everyone else is able to focus on what I still struggle with when birthday shopping: the amazingly happy little boy who loves people. Our family and friends found wonderful presents for Teddy including blue jeans with elastic waistbands (to hold up to his wear and tear and allow him to help dress) and hilarious shirts (about not needing sleep or naps). He has a new assortment of toys that he (and AJ) will love.

It's not his fault he's dirty. He ate dirt cake. ;-)

Teddy spent his birthday party hanging out with all the people he loves, eating delicious food and opening (most) of his own presents with the assistance of his handy helper cousins. It was so neat to watch Teddy open most of his presents because that's something that's taken quite a while for the focus and ability to come together.

So the end to this ramblings is a heartfelt thank you to those who celebrated Teddy's birthday early with us (as we're heading on vacation on his birthday). You made his day special with your presence alone, but he'll also enjoy your presents much in the months to come.