Monday, December 26, 2016

Merry Christmas from our Family!

We wish you a merry and blessed Christmas (or the happiest of holidays that you celebrate in your family)! We had a great time celebrating with my side of the family the last few days, adding 6 adults and 3 dogs to our usual chaos.

Ted loves Zed!

Oddly enough, the puppy was among the most useful additions because Zed and Ted became best of buds, as was predicted. Zed loves to play with people her size, but most children aren't so welcoming of a puppy tackling them and licking their face and knocking them over constantly. But that's Teddy's idea of a grand time, especially when he can sit on, lay on, crawl under and snuggle into that puppy. He also spent a lot of time with his mouth open for kisses ... Ted, not Zed ... well, both of them actually. I also saw Teddy stick his hand in Zed's mouth for some licks and nibbles. Like I said, a perfect match.

Aside from playing with a puppy, Teddy spent his Christmas loving his scooter from Santa. He is so proud of himself for standing on it. He doesn't quite use it properly (yet), but he'll stand on it, he'll stand on it for rides when others push him, he'll walk along side it and push it, he'll sit on it and scoot it and he'll try to set it up on the table. It's neat to see him so engaged with a toy for so long and to see him have that typical response of a favorite gift since it's the first we've really seen that.

Look out world! Teddy's got a scooter!

We made it through the children's Mass on Christmas Eve, and Teddy was part of the processional of all the children 3 and under to start Mass. Teddy was Teddy, which meant he collapsed his weight and smiled up at me from the floor and also tried to steer me to the baptismal font for a quick swim. But he walked through the church, which is something that was impossible for him a year ago. My dad said Teddy's a year behind the times because his Christmas wish last year was for Teddy to walk. It's amazing how much joy that milestone can still bring.

Both boys enjoyed spending time with family, new people to play with and sucker into building LEGOs. AJ also spent quite a bit of time outside "helping" walk the dogs. AJ has managed to build all but one LEGO set, and that includes helping Grandma, Grandpa, Uncle Tom, Uncle John and Dave build their sets that he gave them (from the Dollar Store).

One of the best parts of this Christmas is that our family did less for each other and did something for someone else who needed support this year. We've been on the receiving end of a similar gesture last year, and the thoughtfulness was a bright spot during some of the tough Teddy days. Although there was no shortage of things under the tree, we did more homemade or smaller items, which is nice in so many ways.

Both boys with their best smiles. (AJ's in a really awkward photo phase.)

We have more celebrating and family time with Dave's side of the family tomorrow and then New Year's weekend. We hope you've enjoyed your holidays, that you remember the reasons for your celebrations this season and that your memories created will be ones cherished for years.

Wednesday, December 21, 2016

Vacation ... Blissful Vacation

As I write this, I'm in my bedroom with the door shut. I hear Teddy complaining in his room about being put down for a nap. (This is the second attempt since he was up before 4:30 a.m.) AJ is in his room, supposedly laying in bed until his clock says 2:40. (It was 2:30 until he spent 10 minutes going to the bathroom, washing his hands with a baby wipe and soap and having a drink from a cup that was also holding a toothbrush and floss.) I'm in my room because AJ insisted I rest for 30 minutes since I'm making him rest for 30 minutes (because everything that comes out of his mouth is a whine or he's in tears).

And a week ago I was in 80 degree weather with plenty of sun and no children. Now I'm staring at 6 inches of snow on the deck railing outside, but at least it's warmed up nearly 40 degrees to get into the low 30s.

This feels like a dream right now. I wish Teddy were dreaming instead of kicking his door.
So this post has next to nothing to do with Teddy, aside from the fact that his grandparents not only kept him alive but took great care of him while we were gone for the week. And our sitters who provided respite for my mom who had the Monday-Friday shift may be our saving grace in hoping to do any kid-free vacations in the future. I think they are both my mom's heroes. (Let's just say that from 11:15 a.m. until 4 p.m. can be a very long time with my boys, especially if there's no relief in sight until bedtime.) We're extremely grateful we had amazing family and friends who pulled together to make this trip a reality by taking care of the boys.

This was the first time Dave and I were gone together for more than a night for fun. (We've been gone together a whopping two nights at a time, but that's when we're volunteering and working the entire time.) We dropped the kids off Saturday morning and didn't pick them up until noon a week later on Sunday.
 
We went to the Virgin Islands, flying into St. Thomas but spending most of our time at the Virgin Islands National Park in St. John. It was amazing! We slept nearly 9-10 hours most nights. We sampled a few of the island drink specialties, such as painkillers and bushwackers. (If you ever get the chance, try a bushwacker.) We hiked miles without carrying children, which is oddly enough much more enjoyable. We snorkled together, watching sea turtles swim beneath us. (Dave only had to worry about me drowning instead of three of us drowning.) We went for a sunset hike that turned into a night hike, which was our intent. We rented a standup paddleboard. We used outdoor showers that were mighty brisk for 5 days. Dave drove on the left side of the road without any accidents. I ran on the left side of the road up crazy steep hills with sharp turns. I've never ran hills like that in my life.

Enjoying the warmth. Even the downpours were warm!

It was absolutely incredible to spend so much time with the man who keeps me sane ... most days. We got to sleep next to each other every night. (In contrast, our first night home I spent 2 hours in by AJ. Last night, Dave went in by Teddy around 4, and then I was up with Teddy at 4:30 a.m.)

There were times we thought about how much the boys would love the sun, sand and water, but it was so easy to travel without them. The airport waits with the boys would have been really tough, especially with weather issues canceling half the flights both when we flew out and flew back. The Virgin Islands are anything but accessible, so Teddy would have been on my back much of the time and changing him would have been almost always done in the back of the Jeep.

Beautiful sunset in a beautiful national park.

This was our 43rd national park together since we got married in July 2006. I hope we manage a few more trips without the hoodlums, especially to check off some of the ones like American Samoa with a long flight or the remote ones in Alaska. But our next vacation will be a family adventure out to Washington, checking off the last of the parks in the continental US. As crazy as our road trip adventures are with two young boys, one of whom is Teddy, we're already looking forward to it.

This is me not missing the boys.

Until then, back to our reality. As my husband said our first day back, "Last week, I only had to wipe my own butt."

Friday, December 9, 2016

So Much Happy

So many good things have happened this week that each could be its own blog post.

There's Teddy's last swim class of the semester with his awesome instructors. These two students have been phenomenal with Teddy, making swim class a highlight each week. They greeted him with a smile, engaged him every class and made class so much fun for him. When I asked them for feedback for future teachers for Teddy, their advice included, "Keetp doing different things to stimulate him because he'd be happy doing the same thing the entire hour," and "He really can do a lot of things. If you show him how, he will copy you." Those statements show me that they cared about Teddy learning and developing throughout the class and they saw the potential in Teddy. I was amazed and did my happy dance this week when his teachers surprised Teddy with a parting Christmas gift of a super snuggly Finding Dory blanket, pillow and squeaky bath toy. We certainly didn't expect them to get Teddy anything, and it's touching that they thought so much of Teddy to do something like that.

Best. Instructors. Ever.

There's also the incredibly fun afternoon we had with our friends exchanging Christmas presents, experimenting with dry ice, making Christmas wreathes and decorating gingerbread tents. For the record, tents are so much easier than houses, and it works for us since we really like camping. It was such a fun afternoon and made what otherwise would have been a long day with no school one of the best days I've had in a long time.


Then there's my co-worker who texted to see if we needed any help with the boys or anything while we're on vacation. Although we think we have everything handled with the boys, the thought crossed my mind that we should really line up snow removal for any big snowstorms. Since my co-worker offered "anything," I asked if she'd clear our driveway, so my mom doesn't have to worry about that while watching the boys. The instantaneous response was yes. This is something I normally wouldn't ask, so it was a bit of a reach to ask for this help, but she made it so easy to do with her offer.

Oh yeah, there's also the fact that Dave and I leave tomorrow for our first vacation alone in more than 5 years. Maybe looking forward to the week exploring our national park in the Virgin Islands is why I'm really so happy.

Wednesday, December 7, 2016

Snow Much Fun!

Winter in Wisconsin has arrived with about 4 inches of snow Sunday and now chilly temps today. We had a dusting of snow last month and some snow to play in at my parents' farm, but this was the first substantial snow for the boys to play with at home. And play they did!

Teddy thinks snow is scrumptious.

The best part of their adventures was I watched them from the kitchen window while I got things done around the house. Dave spent about an hour outside with the boys, building two large snowmen, chasing Teddy as he hopped to explore the creek and making snow angels. All three of my boys had huge smiles on their faces and came in to warm mugs of cocoa and tea ... because that's mom's job, right?

He may be trying to eat the snowman ...

Friday, December 2, 2016

Your Smile is Worth 1,000 Words!

One of the best experiences for our family this year was becoming involved with myTEAM TRIUMPH (MTT). This non-profit organization matches Captains with disabilities with Angels who push and pull them for runs, bike rides, triathlons and just about any endurance event you could imagine. There have even been solo angels who've partnered with Captains for a full Ironman, which is a 2.4-mile swim, 112-mile bike ride and 26.2-mile run.

Teddy and I participated in several training runs throughout the summer, and we both had a great time each week. Everyone was extremely welcoming toward Teddy, I got to share one of my hobbies (eh, it's still weird to call running my hobby even after seven years) with Teddy and AJ had some quality time with Papa. Teddy was a Captain for two different 5k events, one with friends and one with strangers.

Teddy walked across the finish line for both events, and MTT captured a great photo of Teddy at the second race. MTT posted the photo of Teddy with the quote, "Your smile is worth 1,000 words!" on its Facebook page yesterday, and it's one of the most amazing graphics:


This makes me smile every time!

Tuesday, November 29, 2016

Teddy's Tree

We went to cut down our Christmas tree Sunday. I had the carrier around my waist, but we helped Teddy walk as we looked for our perfect tree. At one point, we let go of his hands, and he took right off toward a tree. He reached out and touched it with a huge smile on his face.

We had 3 out of 4 looking for the photo. That's respectable.


As it turns out, that's the tree we got, partially because it was the tree Teddy chose. AJ helped cut down the tree, and we headed home. Thankfully, Teddy was willing to take a snooze while we did most of the decorating.

AJ loved the tree trimming experience!

Don't get me wrong, I'd love to give Teddy the opportunity to help decorate the tree because I think he'd love putting ornaments on the tree ... and then he'd pull them off ... and put them on ... and pull them off ... and somewhere in this process the tree would topple over. As long as it didn't maim or kill Teddy, he would think it's hilarious.

So we took the approach that it was best if Teddy didn't see us touching the tree and we instituted the "no touching" rule. (Oh, that's funny! Like Teddy follows rules!) On the bright side, we've made it 48 whole hours with the tree still standing.


Saturday, November 26, 2016

Happy Thanksgiving ... Is Over

Get it? I'm wishing you a belated Happy Thanksgiving ... and I'm happy Thanksgiving is over.

The boys and I headed over to my folks' farm Wednesday afternoon. We spent a fun afternoon playing in the snow, building snowmen and Teddy getting 4-wheeler rides with Grandpa. We enjoyed ice cream for dinner, following my family's tradition that whoever gets a deer while hunting has to buy ice cream for the entire group (including the non-hunters). AJ listened to stories with Grandma Goose, as he calls my mom, while I stayed with Teddy until he fell asleep. Then AJ went to bed without a peep, and I played cards a bit with my family before heading to bed.

Snow much fun!

Then the fun began. Teddy woke once, and settled back down fairly easily. But when he woke again, he wouldn't settle down. What resulted was at least an hour of fairly quiet flopping around, sitting on my neck, kicking me and constant adjusting. The real problems began when he discovered two things:
  1. There was a door that led out of the room.
  2. AJ was sleeping on the bed right above him.
The first discovery came when I finally gave into the urge to use the bathroom (partially to give myself a quick break from Teddy and my increasing frustration). The second came when Teddy began screaming when I wouldn't let him leave the room, and those screams woke up AJ.

So between 4-4:30 a.m., I took Teddy out to the car to give AJ the opportunity to fall back asleep. After I had a meltdown (because I'm guessing I'd been up with Teddy since probably 2 a.m.) while Teddy contentedly played in the car, we took a quick drive around the block to give Teddy a break. Well, that backfired because when we went back in the house, I found AJ sobbing quietly.

Apparently, AJ saw the car lights leave and thought we were leaving without him. My brother got him calmed down to quiet sobs, and I consoled him while Teddy was all excited to see AJ. AJ offered to sing Teddy a song to make him fall asleep, so AJ serenaded us with Santa Claus is Coming to Town. Needless to say, that didn't work.

At 5 a.m. I took both boys to the car to hang out until others in my family awoke. The reason we were in the car is because there's no place to easily contain Teddy and keep the boys fairly quiet without waking the whole house or chasing Teddy everywhere. It's simply so much harder to have Teddy anywhere than home because our home is as Teddy-proof as any place (aside from a padded room) could be, and there's space to go with him.

Car selfie at 5 a.m. Yippee!
I was quite happy when 6:30 a.m. rolled around because it meant I passed my adorable children off to my folks and went for a 5-mile Turkey Trot run with my brother. My patience was recharged when we returned since it had been depleted during the hours of 2-6:30 a.m.

Who doesn't want their picture with a turkey?

Dinner was another struggle with Teddy, though, because he does not sit well in regular chairs and is still refusing high chairs. I ate after I finished feeding him (no big sacrifice there ... Whole 30 doesn't make Thanksgiving the feast it normally is). During the meal, two glasses of wine were spilled (one because AJ's LEGO tower fell). Then AJ almost stuck his arm in the Cool Whip on his pie. While I was trying to prevent that mess, I flipped the entire piece of pie on the floor, Cool Whip side down. Oh, this was after Teddy stole my 94-year-old grandpa's cane and whacked him in the head and shoved the cane in the pumpkin pie. I do believe comedy of errors is an accurate description for our meal.

As I told a friend, I enjoyed spending time with my family, but the rest of the holiday sucked. There's always next year. Maybe we can top this year ... or the year we were at my folks for Thanksgiving and got everyone puking ... or the year Teddy decided not to go to bed until 3:30 a.m.

I think it's safe to say that Thanksgiving is not quite my favorite holiday.

Sunday, November 20, 2016

Widows' Weekend

In Wisconsin, hunting season is a strong tradition. Although I've hunted in the past, I don't sit still well at all, so I hadn't hunted for most of the years prior to having our children. (And now with children, sitting alone in the woods for hours on end suddenly sounds much more appealing.)

Every year, though, I'd make my way to my parents' house with the boys usually after opening weekend and spend the week there until Thanksgiving evening. We'd bake, cook and entertain our family and friends who were hunting. This year, though, is the first that the boys are in school, so that week-long stay isn't really an option (that and Teddy's genetics appointment in Milwaukee Wednesday morning).

So we spent this weekend (known as Widows' Weekend because of all the men hunting and wives left behind ... although plenty of women hunt) hanging around Oshkosh. There was a Grinchmas celebration yesterday, so we spent the better part of our day enjoying that.

Really talented face painter!

We went to breakfast with the Grinch, and both boys enjoyed it thoroughly in their own ways. AJ thought he was all cool eating the roast beast (ham), and Teddy played under the tablecloth, tried to kick the table over, tried to knock his chair over and still enjoyed the food.

This is how you eat, right?
 We got our picture taken with the Grinch, and Teddy was not a fan. He broke down in tears, even on my lap. I may have been laughing, and AJ was keeping his cautious distance from the Grinch. If only Dave were in the picture, I think it would be our Christmas card photo.

One of my favorite pictures of me and the boys!

Then AJ got his face painted while Teddy checked out the coat room. There was no one in the coat room, and it worked out perfectly to let Teddy do his thing while AJ got his cool Grinch face painting.

Teddy hanging in the coat room.

After a break at home for a nap (since we were all up before 5, Teddy kindly obliged and took a snooze) and lunch, we headed into the chilly weather for a horse-drawn wagon ride. The line was long and slow, but both boys were perfectly content watching the crowd, the dancers and everything else. I was impressed ... and thankful ... they waited so well for nearly an hour. The wagon ride was everything AJ hoped it would be, and Teddy had fun, too.

It was in the 60s the day before ... 30s for the Grinchmas celebration.

Sometimes, when Dave is gone, it's worth the extra effort and hassle to do these things to make the days more enjoyable. I know that means I should take the boys to the Children's Museum today, but we'll see if I'm up for that challenge. I already managed church, which is a rare feat, especially 1 adult to 2 children. Despite Teddy wiggling around, crawling under the pew, walking around the front of the pew and laying on the floor ... in addition to standing, sitting, eating snack, drinking his drink, being held and everything else ... the lady behind us afterward said the boys were well behaved and did great. I laughed and apologized for the entertainment we provided, and she said she'd much rather we be present than stay at home. That kind of encouragement makes it much easier to struggle through the service, and I'm grateful for it.

Now, when will Dave be home? I mean, it's nearly 10 ... a.m.

Friday, November 18, 2016

Teddy Decided He's a Big Boy

About a month ago, we began talking about transitioning Teddy out of his high chair. Our challenge was to find a way to get him up to the table where he still had the support (and confinement) of a 5-point harness. Ideally, we wanted something that helped him to contain his food as well, similar to the tray of his high chair.

We put in a request to a donation closet looking for some sort of a positioning chair that might help with the transition. Nothing was readily available, so we waited and debated other options.

Well, apparently Teddy was listening to those conversations.

Last weekend, he began screaming mid-meal. We thought he bit his tongue or maybe had a sore tooth or perhaps was simply too exhausted to function. We pulled him from his chair, snuggled him and put him down for a much-needed nap.

When it came to supper, he began crying as soon as buckled him in his high chair. Uncontrollable crying. When we placed his tray in front of him with his food, he put his head on his tray in tears. He wouldn't touch his food.

We examined his mouth and found nothing. We checked his body for marks, bruises or sore spots and looked for any signs of his chair or his straps hurting him. We eventually held him while feeding him, which is not an easy feat.

Fast forward to the next morning, he ate sitting on a regular chair just fine because we were doing a casual snacking breakfast. Any time we placed him in his high chair, the screaming began. So we got a booster seat, thinking that would be a great way to get him at the table and keep him in place for meals. No dice there. Same instant screaming.

We pulled the booster seat off the chair and pulled his high chair off the chair. He immediately climbed into them and scooted around the room. Great, apparently they're not for meals. They're more like vehicles to ride.

Nothing but class in our house.
We had two days of instant screaming at meals, even when we placed an ice cream sandwich in front of him, if he was in his high chair or booster seat. So, finally we gave up and placed him at the table with a plate.

And he smiled and ate happily (and messily). He sat up extremely straight (for a good portion of the time) and stayed on his chair (a portion of the time) and smiled like he was the coolest thing on earth.

Nothing hurt in his high chair. Nothing was physically wrong. He simply decided he was a big boy who was going to sit at the table like the rest of us.

Ironically, we got an e-mail that same weekend that a positioning chair was reserved for us. We still picked it up. We haven't tried it yet. I'm not too optimistic that Teddy will consider it a viable option, but we'll see.

Monday, November 14, 2016

Struggles of Speech

Teddy's the strong silent type. As in, he's rarely vocal. (And he's extremely strong for such a child with hypotonia. That kid has grip strength.) Teddy first babbled right around Easter with bababa and mamama. Since then, he's been hit or miss with his babbling. We struggle to understand his communication, and it's been a slow process.

We've been approved for speech therapy since Teddy was about 18 months. Speech has always been the last therapy to get approved. It was the first to be denied. It was the first denial to be appealed. And it was the first appeal to be won.

When Teddy got BadgerCare, Wisconsin's Medicaid program, approval for therapy got more complicated. Now both our primary insurance and secondary Medicaid must approve the therapy. Teddy gets the lesser amount of therapy approved. If primary approves 5 visits and Medicaid approves 3, Teddy gets 3 visits.

Apparently, Teddy starting school makes things even more complicated. He gets OT, PT and speech therapy in school, but I was told he could continue to receive outpatient therapy as long as he is working toward different goals in both settings. That seemed simple enough considering there's plenty of opportunity for Teddy to learn and develop, right? Apparently not because that gives insurance yet another reason to question and possibly deny his therapy.

Teddy's last speech visit was September 16 when his authorization expired. His therapist had everything set to go and submitted right away. Now, nearly two months later, he's approved for speech therapy. He gets a whopping 3 visits between now and mid-February.

Yes, after 2 months of waiting, he gets to see his speech therapist three times in three months. Then we'll go through this whole process all over again.

I'm not sure the point of this post other than to express my frustration with the medical system. Taking Teddy to multiple therapy sessions is not one of my hobbies, believe it or not. However, I recognize his therapists are educated professionals who are experts in their respective areas, and I am not. They have different ideas, techniques and approaches. Their assistance has helped Teddy make tremendous progress.

Good thing both OT and PT authorizations expire this month. I mean, who really wants to be approved for therapy during the holiday months?

Thursday, November 10, 2016

We Have a Herd of Reindeer

Last month, I somehow managed to order two sets of rain boots from Amazon instead of one. Woops. Then, we magically had an Amazon order show up that I couldn't really remember ordering. (Dave said he was going to take advantage of that magic order by putting a new camera in the cart that magically orders itself.)

So imagine my panic when 10 inflatable bouncy reindeer arrive at my door, instead of a lone reindeer. I had ordered one reindeer for Teddy as a Christmas present ... not an entire herd! At least that's what I thought. As quickly as my children would allow, I was digging through my past orders on Amazon to make sure I hadn't somehow managed to order 10 instead of 1 ... sneaky extra 0.

Thankfully, I had ordered and paid for one. After contacting the company that we received one box of ungulates instead of one, we were told the herd was ours. (OK, they actually said to donate them to a charity of our choice, which is where most of them will go.)

I think Teddy will enjoy his reindeer, and it's a perfect way for him to work his core muscles, which still need a lot of work. Sitting on this forces him to balance, much like many of the exercises he doesn't enjoy in PT. In fact, I'm thinking one of our herd will be donated to the place where he goes for therapy, so other children can have more fun than doing sit-ups.

Aside from horns to hold onto, this also attracts the AJ brother to play with him. These are not intended for multiple riders, but I do know from personal experience with a green cow version that my two children will cram on one critter. It's sort of like bull riding rodeo-style. Ain't nobody going to last 8 seconds.

Thursday, November 3, 2016

Swim Class

Teddy absolutely loves water. He's always super excited to go swimming in a pool (or splash in it or drink the delicious chlorinated pool water). So I was excited to find an Adapted Aquatics class through the YMCA for something like $40 for 10-12 classes. This class is specifically designed for people with disabilities ages 3 and older. What I didn't realized when I enrolled Teddy is that his teachers would be students at the local university, UW-Oshkosh.

This Adapted Aquatics class is a course that students take as part of their physical education curriculum to learn how to adapt their teaching style to different disabilities. Teddy is matched with two students who are his teachers for the entire semester, and they work with him for an hour in the pool each week. Teddy is the youngest child in the class probably by a few years, but he's also one of the happiest. I swear he has a smile on his face most of hour (except when he's slurping up some pool water). Teddy was one of the last to leave the pool this week and kept trying to guide his teachers back to the pool instead of coming to me.

 "Seriously, guys, the pool is right there! Where are we going? There's still water right there! Oh, hi mom."

Playing peek-a-boo with his teacher.

I won't lie. Part of the reason I love swim class is because I'm not in the water with Teddy. I'm happy not to get almost drowned because he's half my height and is a lot to manage for a full swim class (so it helps he has two teachers). The other part is swim class gives a whole hour that I get to watch how much fun Teddy has without having to be the one responsible for his safety. That's a rare, rare thing because if I'm around Teddy, I'm responsible for him. Swim class is the chance I get to just enjoy the fun my child is having, laugh at his silliness and be amazed at new things he's doing. And I get to see how much fun everyone else is having as well without my focus solely being on Teddy.

His teachers are amazing with him!

I think this class is a wonderful experience for the UW-Oshkosh students and a true benefit for the those receiving the lessons. Kudos to whoever created this class and to all those who continue to make it a reality.

Check out Teddy making a basket!


Wednesday, November 2, 2016

Cousin Love

Although Teddy's been walking for months, he's really been gaining confidence and control in the last month or so. His cousins were amazed when they spent last weekend together up north.

His youngest three cousins enjoy playing with Teddy, and they all get along fairly well. They're fairly tolerant of Teddy being Teddy, stealing their food, inserting himself into others' personal space, etc. The cousin closest in age has taken to saying, "He's so cute," which is pretty funny coming from her.

Even the cousin who has the least interest in Teddy commented, "Teddy's walking!" That might be a bad thing for him because that means Teddy can invade his personal space much easier.

As his oldest cousin Dakota was falling asleep one night, she was talking with my mother-in-law. She said she was so proud of Teddy because he could walk. She said he's still a bit "wiggly," but he could really walk. It's so neat to see the support they have for Teddy ... when they're not complaining about him destroying things or hiding in a bedroom to play LEGOs without his interference.

Also, this weekend Teddy managed to climb the ladder to the slide, position himself correctly and go down the slide feet first all by himself (with an adult standing nearby as a spotter). That was pretty impressive to witness. It's amazing how far he's come!

Teddy was diving through the line ... true Teddy fashion.

Monday, October 31, 2016

Happy Halloween!

Happy Halloween! I hope your day was filled with more treats than tricks. Our boys had a wonderful day, filled with candy, candy and more candy.

One of the few pics of us in costume with Teddy's hot air balloon.

Treats included:
  • AJ telling us that they visited some old people, like grandma and grandpa, who gave them extra candy. (This was his version of telling us the sitter took them to the assisted living facility where she works to go trick-or-treating.)
  • AJ's one grandma insisting he was referring to the other grandparents. So I asked him, "Old like which grandparents." His reply was "All of them."
  • Trick-or-treating with friends who helped carry Teddy's bag to score lots of candy for him, too. Just because he doesn't talk doesn't mean he won't mow through Halloween candy.
  • Teddy having a cool costume that got quite a few compliments, didn't require him to walk and get tired or be awkwardly carried and gave him built-in entertainment.
  • Two sets of our neighbors having special goodie bags for our boys. As in, bags filled with coloring books, stickers and the like, along with oodles of candy.
Tricks included:
  • Dave taking pictures of the boys ... only to discover after they went to bed that there was no memory card in the camera.
  • Teddy peeing all over while getting his diaper changed before bed.
  • AJ's endless tears from over-stimulation ... one of the things I dread about holidays.
Lesson learned:
  • Parents need to eat a good meal before they go out trick-or-treating. It would greatly help them take the tricks in stride better.

Tuesday, October 25, 2016

Gene Therapy

There was a segment on the Sunday Morning Show on CBS this weekend about using gene therapy to treat, or possibly cure, rare genetic disorders. It's absolutely amazing how far modern medicine has come that it's actually possible to remove a person's stem cells, replace the faulty gene and reintroduce the altered stem cells back into the body (via the HIV virus of all things! That part actually makes sense because it spreads throughout the entire body, and they modify the virus to ensure the person is not at risk of AIDS).

It's worth the 9 minutes of your time, so click here to watch it.

Of course, this particular treatment involved traveling to Italy for the clinical trial and returning twice a year for the trial follow-up. And it's absolutely worth it to keep your child safe from the disorder that robbed you of one of your daughters when she was 5 years old. Unfortunately, that clinical trial is no longer accepting new patients, and none are being done in the United States and may not for years to come.

This story makes me wonder if, one day, a similar therapy might be available to remove and replace the PIGN gene in children like Teddy with one that functions normally. Could it happen? Maybe. Could it give these children longer, more fulfilling lives? Maybe. Will it ever happen for Teddy? No, realistically it won't.

But that's OK. The disorder featured in this segment is one of, or similar to, the disorders we were actually warned about before we sequenced Teddy's DNA. We were told we might find out that he has this horrible childhood version of Parkinson's that has no cure and would rob him of every function before taking his life. I think that's part of the reason this story moved me so much, to see parents with fully functioning 2-year-old children lose their children in such a torturous way. Yet, the parents still found ways to move forward, to have a purpose in life. One of the families founded The Calliope Joy Foundation with the sole purpose of helping others with the same disorder that's taking their daughter from them.  What strength and grace!

Saturday, October 15, 2016

Teddy's Second Race

Less than two weeks ago, we decided we'd be sticking close to home this weekend, so I checked to see if there were any captain/angel spots still available with MyTEAM Triumph for the Africa Hope Run. Teddy immediately got a spot as a captain, and I found out this past Monday that I could join his team as well.

Dave and I headed to the race with Teddy bright and early this morning. His angels were a mother/daughter-in-law combo, along with me. They were great with Teddy, interacting with him and getting others to cheer for him along the course.

One of the neat things was Teddy practiced his high fives this race, starting with giving one to Captain Jacob before the race. Then a race volunteer asked for one, and Teddy lifted his hand all by himself for a high five. (If I sound excited, it's because we've been working on that hand motion for a long time in OT!)

Celebrity Captain Ted giving out high fives.

The best was Teddy climbing out of his chair with his big smile to finish the race. He walked holding his angels' hands with me in front to try to keep him focused. (But, Mom, there's all these people over here! I could just walk here and see them all!) He was more focused than his first race, but he gave high fives and smiles to people along the way.

It's amazing to watch all these individuals come together to participate and celebrate. There was a large group of students who came to be angels, and that group was all at the finish line cheering for Teddy when he crossed.

So happy to be walking across the finish line with his angels!
We talked with a few younger captains, likely middle-school age, and it was neat to hear what they've done with MyTEAM Triumph. I loved how one of them approached me about Teddy, "Can I ask you what he has?" I thought her question was such a thoughtful way to ask. She gave me the option not to talk about it or share Teddy's diagnosis. She didn't ask what was wrong with him. I'm sure she's gotten many appropriate and inappropriate questions through the years, so she's learned what she likes to hear.

(Funny sidenote: A 7- or 8-year-old asked Dave at swim class why Teddy needed his wheelchair. Dave's reply started with, "He has a genetic disorder ..." Dave's still working on age-appropriate answers.)

Although we didn't have our own cheering section of family or friends because we did this last minute, Teddy certainly had plenty of folks cheering for him and had an amazing time!

My favorite picture of Captain Teddy!

Thursday, October 13, 2016

Memories

One of my favorite features of Facebook has become the daily reminder of memories. It's essentially "On this day in history ..." except it's all things I wrote or pictures I shared. So many of the memories are happy or silly and bring a smile to my face. Even the one I saw a few days ago of Teddy in the dryer at 2 a.m. on one of those nights when we did a cookie decorating/explore the dryer party while he was up for 3 hours in the middle of the night.

Two years ago today I updated our family and friends with this:

"Teddy is schedule for surgery November 4 to remove a dermoid cyst from his nose. The cyst runs from the tip of his nose, through his septum, up to the lining of his brain. The doctors are unsure whether the cyst actually punctures the lining of his brain, so a neurosurgeon will be part of his team, hopefully more as a precaution than a necessity. If the cyst goes past the lining of the brain, the surgery will obviously be more complex and have much higher risk of complications. The cyst has deformed his nose, so depending on how much they have to remove to remove the cyst, he may need plastic surgery at a later time.

We expect he'll be at Children's Hospital in Milwaukee for at least three days with this surgery. It's called a nasal degloving, and it sounds lovely--a small incision at the bottom of his nose and peeling the skin back. Like taking a glove off your hand ... if his skin were the glove and his nose the hand.
This cyst was discovered by the imaging studies done after the swelling never went down when he bopped his nose. Instead of a broken nose, he had blood go into the cyst and essentially get stuck there.

As always, we appreciate your prayers. Teddy remains his smiling self and is the least affected by this news, at least until they do his surgery and make him fast again."

I remember, as much as we hoped the neurosurgeon would have nothing to do, wishing that perhaps this cyst had crossed into the lining of his brain ... only if it would be the explanation for his seizures and developmental delays. We didn't want brain surgery, but we wanted answers. If I'm being completely honest, part of us wanted to hope that not only was this cyst the explanation but that removing it could also remove Teddy's symptoms. Our ENT said it was unlikely the cyst crossed into the brain based on the imaging ... and she was right.

I remember how terrified we were to do the surgery, rightfully so because Teddy was knocked out for 7 hours while we waited and paced and waited and prayed. And then we got released from the hospital the next day, much to our surprise. (I suppose it helped Teddy's case that he was trying to stand up in his crib at midnight.) I remember being exhausted and disappointed because I heroically took the first night at the hospital with every intention of getting an awesome night of sleep while Dave spent the second night in the hospital.

But most of all, as I reread this post and all the comments people posted, I remember how much love, support, prayers and well wishes we have from all our family and friends. Teddy and our family have been included in more prayers than I could ever count ... and continue to be. What a blessing for our family!

Sunday, October 9, 2016

The Little Things

Lately, we've been spending some quality time together with Teddy around 4 a.m. each day. It seems that he's waking up and needing some love and snuggles to fall back asleep.

One morning, I noticed something for the first time.

When your ear itches, you probably scratch it exactly where it itches. I'll bet you might even stick a finger inside to scratch exactly where it itches. (*Gasp* Sorry all medical professionals!)

Apparently, Teddy's ear itched that morning. I saw him paw at his ear with his entire hand. Then I saw him rotate his hand to isolate his thumb and attempt to jab his thumb into his ear. He was fairly successful with this, which didn't surprise me because he uses his thumb for swiping tablets and smart phones. Then I saw him, just for a split second, get his pointer finger inside his ear.

Now, normally if I saw Teddy struggling like this, I would have helped him by trying to scratch the itch for him. But he was almost asleep, and I didn't want to mess with that. (He can go from sleepy to wide awake in a moment ... it's a gift for him and a curse for us as parents.)

Instead, I watched him struggle. I often recognize how hard he works to do nearly everything, but this caught me off guard. It's the little things ... little or big, things take a lot of effort and concentration for Teddy. It reminds me that what he accomplishes each day is amazing.

Maybe next time I'll risk scratching his itch for him. Then again ... maybe not. He was back asleep within 5 minutes of itch.

Thursday, October 6, 2016

Biking Boy

Teddy always enjoys climbing on (and then off ... and then on ... and then off ...) every bike we own, even the ones that are obviously too big for him. He scoots around using his feet and thinks he's pretty cool. He's also been practicing biking occasionally at physical therapy, and we've had plans to adapt a tricycle at home for him for months. (The idea is to enlarge the peddles, and secure his feet into the peddles.) The farthest we've gotten is his grandpa cut out the foot peddles for us a few weeks ago.

And then this happened today at physical therapy:



The best response was Dave's when he saw the video:

"My lil HERO!!!! I'm not sure children are suppose to inspire their parents as much as he does for me!!! Guess I got to get those foot pads on our trike!!"

Wednesday, October 5, 2016

Here's Your Happy for Today

We've been to the children's museum twice in the past two weeks, and it's been fun to see Teddy really initiating his own play and exploration. He'll crawl to what he wants to explore, but he's also really motivated to walk among the exhibits. He really enjoyed the fire engine, and I was even able to capture him walking up the ramp on video!



Walking takes tremendous effort for him. Walking uphill requires even more effort. Doing it while looking adorable ... well, that's easy.

Tuesday, October 4, 2016

Fashionista

One of the unique things about Teddy is that he still prefers to bunny hop as his mode of transportation. He'll crawl properly (never knew that was a thing, did ya?) sometimes, and he'll choose to walk when he wants. But bunny hopping is easiest and fastest for him, so it's what he does.

Bunny hopping is exactly what it sounds like ... it looks like he's hopping like a bunny. And he's cute like a bunny, which is why we don't call it frog hopping I guess.

Bunny hopping may move Teddy from point A to point B quickly, but it also destroys his pants. I've seen him take a brand new pair of jeans, wearing them only for the second time, and put holes in both knees in a single afternoon. Hopping around on concrete does that to jeans. In fact, Teddy is the only child I've known to have worn holes in his shorts. Two pairs this summer ... apparently they were just long enough that the fabric covered the part of his knees otherwise known as his landing pads.

The end result is we have a lot of pairs of pants with holes in the knees. Those become the clothes for up north or around the house, and I send him to school in pants that haven't been shredded yet. (That's my plan, at least until I run out.)

Coming back from up north, we stopped for ice cream. As Dave was leaving with Teddy, he overheard a table of teenage girls commenting on how cute Teddy looked with his ripped jeans.

Yes, my child is a fashionista. He's wearing the hottest trend.

It's only because his coping mechanisms for his low tone destroy his clothes, but that's beside the point. Dave now plans to sell Teddy's pants online as custom fashion jeans. At the rate Teddy works his magic, he can design a new pair every week. Dave's planning to sell them for $50/pair.

I doubt Dave will actually start his joint business venture with Teddy. But just in case you have some extra 4T pants, I could cut you a deal if you want to be a supplier for this great opportunity.

Sunday, October 2, 2016

New Skill

Tonight the boys were playing in the basement, and I noticed Teddy wearing a running medal. I asked AJ if he helped put it on Teddy. He said he hadn't and then got all excited. "Teddy has a new skill! He learned to put on running medals. That's a new skill for him!"

Now, Teddy can put things around his neck, but he usually pulls them right off. So this was sort of new for him to leave them on for a period of time. What made me chuckle was AJ celebrating this as a new skill ... not the language you hear from most 5-year-old boys. His word choice made me laugh, but his enthusiasm for Teddy's accomplishment kept the smile on my face longer.

Tuesday, September 27, 2016

Celebrating Successes

Naturally, as Teddy's parents, we celebrate his successes and accomplishments with hugs, smiles, praise and sometimes arm flapping when I'm really excited (like the first time he pulled himself to a stand!). It's such a heartwarming experience to see others do the same.

This was the e-mail we got from Teddy's teacher today as soon as class ended:

"I just wanted to email you today to let you know that we were so proud of Teddy. Typically, he crawls or "bunny hops" from place to place, but today he walked around during play time to get from one area to another at least 3 times! We were so excited!"

I'm happy to hear Teddy chose to walk around the classroom today, especially because I know he's capable of that. (I'll admit I still do double takes when I see a child walking in our house because my brain automatically assumes it's AJ. Granted, I should know the difference because AJ doesn't walk like a drunken sailor, but it still sometimes surprises me to see Teddy walking.)

But what makes me really happy are the words "so proud" and so excited!". The fact that his teachers are proud of his accomplishments and excited for his progress makes my day. And Dave agrees.

Unfortunately, he also agrees with me that it's likely Teddy will try to eat his part of the classroom puzzle they're working on this week ... but today we're celebrating successes!

Thursday, September 22, 2016

Captain Teddy

We had quite the fun-filled, busy weekend, which is why it's now Thursday when I'm posting this. It took a few days to recover from AJ's birthday, his first fun run, Teddy's first MyTEAM Triumph (MTT) run, AJ's Lego pirate birthday party and my half marathon.

As much fun as the whole weekend was, the highlight was Teddy's first event as a captain with MTT. When I first considered signing him up as a captain, the amount of support was incredible. Thank you to everyone who showed your support for Team Teddy.

Teddy's lucky angels were Stephanie and Ashley, along with his proud mama. Both these ladies have known our family since before Teddy was born and were incredibly awesome angels.

Teddy & his angels!

Race day was quite the experience. Teddy's Aunt Lindsay went early with us since we had to be there an hour before the event. Teddy checked out everything before the run, putting in his own version of a 5k. (Let's just say I was grateful to have Aunt Lindsay to help entertain Ted. He's not a captain who's willing to hang in his race chair for long if we're not actually running.)

Captain Teddy pre-race.

MTT does a team meeting to recognize everyone who makes race day possible, as well as share last-minute details and reminders (that we may not remember when we're caught up in the moment). They also do a team prayer with everyone praying for their captain before heading to the starting line.

The teams go to the front of the crowd and get a few minutes before the rest of the race begins. This allows us to get all the chairs spread out and not have everyone tripping over us. Ashley ran like a bat out of hell from the start to give us some space, so we ended up leading the entire crowd for about 3 minutes, which is the first time and longest time I've ever led any sort of a race. It was so neat to be running through this beautiful park along the water with Teddy leading the way.

Captain Teddy leading the pack!

Our lead didn't last forever, as we got passed by the pace car, other MTT teams and then other runners. Still, we knew we had a fast first mile when the guy called out 6:31 as our time. Ashley said my face was priceless because I didn't instantly add the couple minutes we had on the official start time.

Our fast start also meant we nearly killed Stephanie, who was quite the trooper to put up with the sprint start. We took an easier pace to enjoy the rest of the race, with a few walk breaks to straighten Teddy in his chair and share some water that a little girl was passing out with Teddy. Since Teddy's chair had his name on it, we had people cheering for him, and we did our best to get the bystanders cheering for him as well.

We got Teddy out of his chair probably a bit earlier than MTT volunteers expected because we wanted him to walk to the finish. He walked the whole way we asked him to, although he was really distracted by all the people on the side. Having him cross that finish line walking was just incredible!


And, the icing on the cake, was that Teddy took third place for the MTT teams, so he got a cool tile plaque to go along with his medal from the run.

This absolutely was the most fun and special race I've ever done, between leading the pack with Teddy, watching him cross the finish line and being surrounded by family, friends and the rest of the wonderful people with MTT. I cannot wait to be an angel again for Captain Teddy!

Wednesday, September 14, 2016

Happy for a Handprint

One of the things I was most excited about with school for the boys was the special art projects they would make. Teddy did one within his first week of school, and his teacher told us he really enjoyed having his hand painted. She said he did a great job holding out his hand, and his smile lit up his face as it was painted.

This is the poem Teddy brought home last week Tuesday:

I'm off to school to learn a lot
Each day is fun and new

I think about you all day long
And I hope you think of me too

But for these few short hours 
While we are apart

Here is my little hand to hold
Because I love you with all my heart!

I may or may not have gotten choked up reading it ... but only because Teddy was pathetically miserable after having screamed the entire bus ride home. This poem made my day!

Teddy's first art project!

Wednesday, September 7, 2016

Brothers on Bus Rides

Yesterday was the first day AJ and Teddy rode the school bus home together. AJ's only complaint was that some other child sat by Teddy on the ride home.

"Teddy's my brother."

This was AJ's logic on why only he should be allowed to sit next to Teddy.

"Maybe he made a new friend."

This was my attempt to provide some rationale on why it would be OK the bus driver put someone else in the seat next to Teddy.

"No, Teddy's my best brother I ever have."

This was me stopped in my tracks by the fierce love and protectiveness and bond AJ has with Teddy. I hope the only thing that changes in that statement in the years to come is perhaps that it becomes a bit more gramatically correct.

Friday, September 2, 2016

First First Day of School

Yesterday was the first day of school for both my boys: 4k for AJ and early childhood for Teddy. Someone asked me if it felt like the years flew by that AJ was already heading to school. I joked I'd been waiting for this day for 5 years (even though AJ isn't even 5 yet) since it was really difficult for me to leave work when he was born. And then I said the emotions about AJ going to school were really overshadowed by Teddy because Teddy alters our perspective on everything.

If we didn't have Teddy, I'm sure AJ's first day of school would have been more emotional for us. Instead, nearly all our nerves were wrapped into worrying about Teddy. We're excited for AJ, but it's easy because he's thrilled to go to school and has had so much fun the past two days. He comes home ready to show off anything he has, even a piece of paper in his folder that I need to complete, and rattles off everything he can remember about his day (which still doesn't include the names of anyone from his classroom, even his teacher).

It's harder with Teddy because at best I'll get a note or a quick statement of how his day went. He can't tell me anything about what he did, if he got hurt (like AJ who had someone step on his foot today) and who his friends are.


All smiles before school!
But, I know in my heart that he will love school. He will learn amazing new things. He will win over his teachers and therapy team with his smile, charm and personality. He will make new friends and learn to play with them in at least a somewhat socially acceptable manner. His smile as I picked him up yesterday told me that he had fun. (It did help to hear from his teacher, though, that he had a good day.)

I love how much these two love each other!

And another positive note: given their track record in day care settings, I'm quite proud to report that neither one has been kicked out of school yet. (I'm serious ... they've both been booted from day care ... and almost got booted together for a second time before we pulled them.)


Wednesday, August 31, 2016

Another One of Those Days

Today has been another one of those days ...

5 a.m. I wake to Teddy fussing. I attempt to ignore him, hoping he'll settle back to sleep on his own.

5:15 a.m. I give up and decide to take a quick shower, so I can settle Teddy down while Dave leaves for work.

5:20 a.m. Dave lays down with Teddy.

5:30 a.m. Dave asks me to get the thermometer. Teddy's temperature is over 100ºF.

5:31 a.m. Teddy gets Tylenol, is stripped half naked, gets cold compresses applied, gets his Keppra, gets a stuffed animal from the freezer to snuggle and gets lavender and peppermint essential oils applied.

5:50 a.m. Teddy settles back to sleep in Dave's arms downstairs. Dave insists on staying home at least until Teddy wakes up. I alternate between standing beside them staring worriedly at Teddy and putzing through the house and picking up things.

6:50 a.m. AJ wakes up. (Of course, this is the type of day that he sleeps in this late.) AJ helps me with laundry, picks up a bit of his room and packs his backpack for school. Then he plays Legos.

7:45 a.m. I begin making pancakes for breakfast since AJ loves them and rarely gets them fresh on weekdays.

7:50 a.m. Teddy wakes up. He crawls down to the floor and hops around, which is a positive sign. He seems much cooler.

8 a.m. We eat pancakes for breakfast, AJ is thankful Papa is home yet from work but sad Teddy isn't feeling good.

8:20 a.m. Dave leaves for work.

And after that, let's see ... AJ played really nicely with Teddy for a while. AJ picked out some toys that I traded him money for him to donate to Goodwill. He got $1.10, and I got a box partially filled with items leaving our house. Then AJ headbutted Teddy, and that's where my day went from bad to worse. Removing tablet privileges for the day ... and now rest of the week due to continued whining and fits ... makes for a tough day. AJ drew pictures of him mad and sad to show me how he feels. (Mine would be foaming at the mouth with hair standing on end, just for the record.) Teddy refused to nap despite being miserably tired ... until he finally went down about 20 minutes ago.

As trying as these days are, I'll gladly accept them (and complain about them here) as long as Teddy doesn't have a seizure. That continues to be our prayer for today.

Tuesday, August 30, 2016

What's the worst that could happen?

Teddy's open house went well tonight, and we got to meet his teacher and her assistant and his OT, PT and speech therapist. They all seem very nice and competent, and I'm sure they'll fall in love with Teddy. (And, yes, I gave them all a copy of his letter.)

But with school starting in two days, I feel like I've pushed all my worries and fears about school about as far back as possible. So I thought it might be fun to put together a mostly comprehensive list of all my fears and worries ... and then I can check them off if/when they occur. (I know, I need better hobbies.)

If I could fast forward a week or two, I'm sure things will be fine. But for now, here's my list:
  1. I won't know exactly what happens, both good or bad, because Teddy can't tell me.
  2. Teddy will have injuries of unknown origin. 
  3. There's 6, soon to be 7 children, in his classroom with one teacher and one teacher assistant. One of those children is Teddy. You do the math.
  4. Teddy will disrupt the learning environment for the other children because he'll require more attention than anticipated.
  5. Teddy will be the most challenging child in the class because of his delays.
  6. Teddy will lack skills that all the other children in his class have.
  7. Teddy will sit on the other children ... or tackle them ... and then sit on them.
  8. Teddy will bite the other children (but in his defense, this probably only happens if they put their body part in his mouth).
  9. Teddy will find a way to climb into that little window I saw in the classroom.
  10. Teddy will climb everything else in the classroom.
  11. Teddy will eat the books.
  12. Teddy will fall out of the chairs.
  13. Teddy won't follow the instructions and will not comply with classroom activities.
  14. AJ isn't there to protect Teddy, translate for Teddy or report back to me.
  15. Teddy will escape the 5-point harness on the school bus.
  16. Teddy will be a miserable cuss on the 40-minute bus ride.
  17. Teddy will destroy many things in his classroom. 
  18. Teddy will have a seizure at school.
  19. Teddy will have a seizure on the bus.
  20. I'll be that mom.
Hmm, only 20 things. Why does it feel like so much more to worry about? The reality is in two weeks, this will all be a moot point. Many, hopefully most, of these things will never happen. We'll develop solutions for the few fears that become reality. Now to survive the next two weeks ...

Monday, August 29, 2016

Hey Mister DJ!

Teddy discovered his vocation this weekend at a wedding reception. He is destined to be a DJ. Or to stare and smile at DJs ... repeatedly ... at least 20 times in a night.

We attended a wedding reception for Dave's cousin this weekend, and both our boys loved the "dance party" as AJ called it. AJ danced with mostly with his cousins, including a slow dance with one of his cousins, which was adorable with the slow awkward side shuffle step that his dad (and honestly, I) still use.

Teddy was in his element from the moment he was released from his Kimba Kruze after dinner. He loves being around people, so having 150 people in a room is pretty fun for him. He put on many steps, leading whomever around the dance floor, weaving in and out of people. We tried to get him to dance a bit here and there, but his version of dancing was racing across the floor.

He kept circling back to the DJ booth. He'd stop, stare and smile at the DJ. Then I'd lead him back on the dance floor. He'd go past the front of the DJ booth, turn it at the other side, stop, stare and smile at the DJ. Then I'd lead him back further onto the dance floor, and we'd make a lap or two before visiting the DJ again.


I was slightly worried when the dancing began with the strobe lights and flashing colored lights, even though nothing like that has ever been an issue for Teddy with seizures. Thankfully, my biggest worry ended up keeping up with him as he explored everywhere.

The wedding was way more fun than I anticipated (as I had expected it to be a lot of work to manage Teddy). I knew AJ would have a blast with his cousins, as he'd been practicing his dance moves for a couple weeks. (He also panicked that morning when he couldn't find his clip-on tie because he "wouldn't look snazzy enough." Don't worry, we found it, so he looked the appropriate amount of snazzy.) AJ even ordered his first drink at the bar by himself - water with a sword of cherries. I hadn't realized how much fun I'd have watching Teddy and AJ in their element.

Congrats Tracey and Eric! Thanks for a great evening.

Wednesday, August 24, 2016

Smiles ... Teddy's Secret Revealed

Ironically, I think I discovered the secret to why Teddy has the most amazing smile in an article entitled "Three Secrets of the Most Well-Liked Speakers." According to this article, the first secret is to smile radiantly.

Radiant describes Teddy's smile perfectly (and the smiles of other children with his diagnosis). The article explains a bit more about the type of smile (out of apparently at least 17 varieties that exist) that helps people be most successful when speaking.

"... the one that's most effective at communicating genuine joy is known as the Duchenne smile named after the 19th-century French scientist Duchenne de Boulogne. Duchenne smiles are characterized by raising the corners of your mouth and cheeks in a way that cinches the crow's feet around your eyes. In other words, it isn't just something you do with your mouth—it transforms your entire face. The timing of your smile and its connection to your speech and behavior are also hallmarks of these genuinely radiant smiles."

Teddy's smiles transform his face. They are radiant. They communicate genuine joy. And I would make the argument, because I'm his mother, that his smiles are timed and connected to others as his way of communicating and connecting with them. Even though he's by definition still non-verbal, he's mastered one of the secrets of most well-liked speakers.


And I've found the name for Teddy's smiles. That makes me smile.


Monday, August 22, 2016

3 Year Pictures

It only took us a month or so to take Teddy's 3-year-old pictures. He didn't mind waiting ... and the pictures were well worth the wait. It's amazing how much of his personality and zest for life you can capture on camera in 10 seconds. Realistically, that's about how long he held still before he'd make a beeline for the stairs to climb them and see where else he could go explore outside. Here's the incredible adorable boy who is responsible for my increasingly buff arms, a good dash of worry, plenty of prayers, a full heart, and most days, a better perspective on life.

This is pure Teddy. Smiling and slightly on the move, given the artistically blurred foot.


Smiling yet almost serious for Teddy.


What in the world are you doing Mama?


His smile reflects his pure joy.



Let's just say AJ was helping edit this picture: 3-eyed Teddy Monster.


Tuesday, August 16, 2016

A Letter to His Teachers

I firmly believe God's been doing his best to prepare me for the honor and challenges of being Teddy's mom well before Teddy was born. In the early months after I had AJ, I stumbled across a blog called Noah's Dad, which details a family's unexpected journey with Down Syndrome. I found so many of the posts insightful and thought how beneficial this information would be to another family in a similar situation. Although Teddy does not share the same diagnosis, there's enough parallels to give me hope, inspiration and a few ideas.

One thing Noah's parents did before Noah entered a traditional classroom was to send a letter to his teachers to help them better understand him. I thought this was an excellent idea. It's something more personal (and concise) than the lengthy IEP. So with school starting in a couple weeks, here's the letter Teddy's teachers will receive:



We wanted to introduce you to our son Teddy. We know you have his ISP, but there’s more to him than what’s documented there.

Teddy has a rare genetic disorder called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. We finally learned his diagnosis in November 2015 after nearly 2 years of searching for answer after his first seizures. At the time, we were told Teddy was the 15th child known in the entire world with this disorder, which was only discovered by the medical field in 2011. Our joke became that Teddy wasn’t one in a million. He’s more like one in a half billion.

Essentially, Teddy’s genetic mutations affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically. Part of his diagnosis includes hypotonia. This doesn’t mean he is weak, but it means his muscles are more relaxed and he has to work harder than you or I to support his own body. You will notice he is a bit floppy, for lack of a better word, and tends to choose positions that help him support himself. 

Teddy is curious about the world around him and likes to explore, although his methods are not always appropriate. Teddy enjoys the feel of items in his mouth, so we try to redirect him to something appropriate like chewelry if he has that need. Teddy likes to climb, so you may want to watch your bookcases, tables and anything else you may not realize he will believe is a mountain for him to scale. He’s at the point where he believes the word “no” means that he should laugh and continue whatever action prompted the word. 

One of the things that makes Teddy unique is he has an extremely high pain threshold. He may cry when his feelings are hurt or when he’s tired, but he rarely cries when he’s hurt (or he will cry for only a brief time where most other children would cry for much longer). This sometimes means we find bruises or scrapes without knowing exactly when they occurred because Teddy never cried to let us know something hurt. 

The most important thing about our son is that he is a child first just like any other child. He wants to play and learn. If you have any questions about Teddy or his genetic disorder, we hope you feel comfortable enough to ask us. We have created a blog about Teddy’s journey, which you can find at www.teddystriumphs.blogspot.com if you’re interested. 

We are very proud of our son and love him more than we could ever express. Thanks for the role you are playing in his life, and thank you for all you do to invest in our children. We appreciate you, and we’re so excited for the possibilities for Teddy as you work with him this year.