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.

Tuesday, July 11, 2017

1, 2, 3 ... Look at Me!

Timehop on Facebook reminded us yesterday that exactly a year ago Teddy was walking 7 to 8 steps independently, without prompting. This was a huge milestone for him, yet I cannot believe it's been such a short time that he's been walking. He walks like a natural (drunk). He can maneuver turns, corners and stops before he walks into doors and walls ... most of the time. He's able to transition to different surfaces much of the time and walks across grass like a pro (football player going for the tackle). It just amazes me how much progress he's made in this one area alone in a year.

One year ago: This boy is walking 7-8 steps across a room, unbribed by us to walk, he decides to do it all on his own!!!! He is even taking slight pauses in the walk.

Yet another reminder of his progress occurred this weekend. We were walking into a store, with Dave and I on either side of Teddy holding his hands because parking lots have a lot of distractions. We counted 1, 2, 3 and then swung Teddy up in the air by his arms and landed him back on his feet. This was the first time we've ever done that, not because we never walk holding his hands but because he wouldn't have had the balance and ability to transition back to walking from flying. I think we may have created a monster now that he knows how fun it is. Maybe he'll learn how to count 1, 2, 3 from this new workout for us ...

He reached two other mini-milestones this weekend. He climbed the rock climbing wall of our playground set, which is set at an angle with rock climbing holds. Then he safely sat down and went down the slide. He's done parts of this process before and possibly even the entire process, but this was his first time flying solo without a hovering helicopter parent right there to catch him (although I was debating how fast I could fly across the yard from our garden to the playground).

The other milestone was that we removed the baby gate at the top of our basement stairs. Now, mind you, this isn't because we're completely confident in Teddy's ability to safely navigate stairs. In fact, Dave is terrified Teddy is going to try walking up or down and hurt himself ... or that Teddy will simply walk right down the stairs without realizing there's stairs there. But, we decided this was the safest route to minimize ER visits since Teddy has been attempting to scale the baby gate to go over it. He reached the point where he could get one foot hooked on top, so we removed the gate before he flipped himself over the gate and down the stairs. I'm optimistic this will help him become more aware of his surroundings that he won't just wander off the top of the stairs and I'm comfortable with him practicing some stairs walking instead of wiggling on his butt ... but I'll let you know whether the stairs or Teddy win. I'm pretty sure it will only take one ER trip for stitches before we install a half door that will buy us another year or two before Teddy figures out how to scale that.

I've said it before and will probably say it many more times, but these little things are such big things for Teddy and for us. They make my heart happy (when it starts beating again after he scares the daylights out of me).

Wednesday, July 5, 2017

Teddy's Spirit Animal

If I were to believe in reincarnation, I'd be adamant Teddy was a panda bear in a past life. When I watched this video shared by Vix on Facebook, I couldn't stop giggling. Teddy is a panda bear.

He grabs onto you and clings to you. He topples over losing his balance. He pulls your hair. He dumps any container placed in front of him. He tries to escape from where he's supposed to be. He goes where he's not supposed to go. And he looks absolutely adorable the entire time.

Now, if you need me, I'll be watching more Teddy, I mean panda bear, videos.

Friday, June 30, 2017

See You Later, Not Goodbye

The last two years have been the most consistent, best childcare we've had since we lived in Denmark. We've went through our share of sitters for the boys. We considered reformatory school after not one, but both boys got kicked out of separate childcare settings. After yet another bad experience, we tried recruiting childcare through the local university.

And we hit the jackpot. We found a nursing student who was comfortable with Teddy's history of seizures (which is why he got the boot from one daycare provider) and his disabilities. She was willing to come to our house to watch the boys, which meant they had a safe, familiar environment. She was agreeable to taking them out into the community to parks, the children's museum, etc.

Throughout the last two years, she's watched Teddy reach milestones we weren't quite sure he would hit. She's encouraged his progress, reported his new accomplishments to me and taken pride in his skills. Teddy's face lights up whenever she enters our house, addressing him as Mister. Teddy routinely tries to leave with her at the end of the day, wanting to continue his fun with her.

She's been one of a handful of people who've successfully watched our boys in the evening and has become familiar with their bedtime routine. She's administered Teddy's anti-seizure medication, monitored his temperature and ensured his safety ... as much as possible because, after all, he is Teddy.

She's played games with AJ. She's endured hundreds of questions from AJ, along with tantrums for saying no to his use of tablets or television. She's played outside with the boys at different parks. She's taken them out to eat (no easy feat by yourself). She's fed their love of ice cream (literally).

She's taken Teddy to the waterpark by herself, lugging him and an tube up the slide multiple times and redirecting him from the deep end of the pool, which is of course his newest fascination. She's recruited another friend to accompany her to the waterpark, so she could take both boys.

She's always been willing to help out when we needed it, whether for me to escape to work or for us to escape using respite. She's been flexible to come early and stay late. She's taken Teddy to his horse therapy appointment an hour away, with AJ in tow. She's taken AJ to gymnastics class with Teddy in tow.


She referred another amazing person to us who became our second childcare provider. Combined, they provided my mom with the support she needed (during finals week of all times) to watch our boys for a week while we were in the Virgin Islands. They made that experience doable for my mom, which means another trip without the boys remains within the realm of possibility.

Yet, she had the audacity to graduate from college, pass her boards, become a RN and accept a pediatric nursing position across the state. I'm so happy to see her pursuing her dreams and know she'll be a terrific nurse for any children she encounters, regardless of their needs.

At the same time, I had a hard time not crying yesterday when she left our house for the last time. She made the day as special as possible for the boys, taking them to AJ's favorite restaurant (Buffalo Wild Wings) for lunch and then to the store to pick out goodbye gifts from her. I can't help but think of the Dr. Seuss quote:

“Don’t cry because it’s over, smile because it happened.”

Now, to brace myself for our other sitter's last day next month ... 

Sunday, June 25, 2017

Teddy Likes Tractors

Another weekend in June, another dairy breakfast. Both boys enjoyed the food, especially the watermelon that we encountered here for the first time. There was an awesome collection of cute little animals including sheep, goats, chickens, ducks, llamas, cows and bunnies. Teddy got to pet a fuzzy baby bunny and a cuddly baby goat (that I would have liked to keep).

Just think ... we could create goat therapy!
 Teddy also got to sit on a few tractors, which he absolutely loved.

That smile ... that kid.

I think he's going to be sad that June Dairy Month is over ...

Tuesday, June 20, 2017

Brave is not the Same as Fearless

Yesterday at hippotherapy, Teddy's therapist commented on how brave Teddy was. My response was, "There's a difference between bravery and having no fear." She meant that Teddy was willing to try whatever position they maneuvered him into on the horse with complete confidence that they'd keep him from falling. They had Teddy ride side saddle to engage different muscles with the side-to-side motion. They had him lay on his belly across the horse to work on his neck and core muscles. They waited for Teddy to notice he was sliding off the horse and encouraged him to readjust himself, which he actually did several times.

video

His fearlessness showed  through at the parks we visited yesterday as well. There was the time he was going to just go off a 4-foot drop that was at the top of the rock climbing wall. He didn't try to walk off it. No, he safely sat down on his butt and was going to scooch off it. Safely, of course. (I caught him.) Then there was the time he thought it would be a good idea to walk across the uneven steps that were suspended 3 feet off the ground, with each step about 1 foot apart. After catching him multiple times, I lowered him to the ground.

As much as he does need to develop a healthy appreciation for his own safety, his fearlessness gives him the freedom to try new things and continue to push to do more to keep up with AJ and the other kids. He walked, safely and successfully, up and down many gradual ramps at the park all by himself without holding onto anything. He walked up a steeper ramp with rock climbing holds while holding onto the rails, all by himself. He continued to pop up to his feet whenever he fell (or dropped to his butt to safely navigate an obstacle that he knew he couldn't manage on his feet).

That fearlessness gives him freedom ... and lots of scrapes, bumps and bruises. (Most of which he doesn't even notice, so I suppose that further enables his fearlessness.)

Friday, June 16, 2017

Getting Hot & Sweaty with Teddy

AJ has spent this entire week at my folks' house, filling his days with LEGOs, games, Lite Brite and more. He's went to Firehouse Ceramics twice to work on pottery, and he spent all day yesterday at Circus World. Honestly, I'm a bit jealous.

As nice as it is for AJ to spend some time enjoying himself (instead of going along to three appointments for Teddy this week and having Teddy constantly requiring my attention), it's also nice to have Teddy to myself. We get a few more snuggles and cuddles in the morning. Teddy doesn't bug me about tablet or TV ... in fact, I can pick out a movie to watch with him because I know he won't repeat any of the swear words or be scared by the bad guys.

It also gave me the opportunity to take Teddy for a run. Normally Teddy and I run with myTEAM Triumph on Monday nights, but the weather didn't cooperate this week. I had a 5-mile run on my training calendar, so Teddy and I hit the trails in Neenah after his therapy appointment. (It was one of his best PT appointments I can recall. He did 11 sit-ups without complaints, did all the sit-to-stand activities and obstacle course that was expected of him and rode the tricycle like a rock star.)
The Trestle Trail bridge is so scenic.
It was hot. Running when it's 78°F and sunny while pushing a stroller (with a few flat tires that I discovered after about a half mile) makes it feel like you're running in Death Valley. But it was a beautiful place to run. We went along a portion of the half marathon route for the Fox Cities, so I sort of knew where I was going enough to not get lost. The trail goes along the water for a good portion and is rather peaceful as long as you don't mind the sweat pouring off you.

I wonder why only one of us is red as a lobster? Maybe next time Teddy can push me.
Afterward, Teddy insisted we go check out the park. It was a pretty awesome park, and he had a blast. He went down a few slides all by himself (first one was belly first ... not his best idea). We definitely need to go back there as a family to perhaps take the paddleboard out on the water, walk the bridge together and play in the park.

Monday, June 12, 2017

Bellin Buddies

If you're familiar with our family, then you know about myTEAM Triumph (MTT) and I Run 4 (IR4). Both are non-profit organizations that aim to build relationships and foster inclusion through partnering athletes with people with disabilities. MTT focuses on in-person relationships within local communities, and IR4 takes advantage of technology to build an online community. Both have had a tremendous impact on our family, and this past weekend combined the two together for  the first time.

Teddy's running buddy Heather, from IR4, made the (extra) long drive (thanks to horrible traffic) from Michigan to our house in Wisconsin. She and her husband Steve had volunteered to be Teddy's angels through MTT for the Bellin Run this past weekend. That meant they both fundraised a minimum of $100 (to cover entry costs for themselves and ensure captains like Teddy can race for free). They took time off work. Then, after spending most of Friday driving here, they got back in a car at 5:30 a.m. to head up for the race.

Captain Frumpy Face Teddy

Teddy was a bit sleepy, which actually worked out well because he wasn't trying to escape from his race chair during the pre-race preparations. (He was in his chair longer than usual because there were a record 41 MTT teams, which required a bit extra coordination.) He perked up about a third of the way through the race and realized he could play with the balloons we had attached to his chair. (I'd definitely do that again because it let the runners passing us from behind know Teddy's name to cheer for him.) Teddy got stopped by Davon House, one of the Green Bay Packers, for a photo opp (that unfortunately didn't turn out but was still pretty darn cool). He loved every sprinkler we went through, which was quite a few. Teddy shared a freezie pop with Heather. (It was so hot that several people along the route were handing out freezie pops out of their Midwestern hospitality and generosity. We passed up the free margaritas, though, because we thought we perhaps shouldn't tarnish Teddy's and MTT's image.)

Teddy flying with his MTT (and IR4) Angels

Each race with MTT has been incredible in its own way. This race literally flew by, even though it's the first time Teddy's done a 10k instead of a 5k. I've done the Bellin more than 5 times, and this was by far the most fun I've ever had doing the Bellin. I think my PR (personal record) from last year will stand for quite some time because I don't see myself running the Bellin again without Teddy and MTT. Not only did Dave and AJ join us, but we also had both sets of grandparents cheering on Team Teddy. (And his speech therapist found us before the race, which is remarkable considering that we were among 13,000 people there!)

The rest of the weekend spent with our family and Heather and Steve was equally awesome. After Teddy took a much-needed nap, we  headed to the waterpark in town. He led Grandpa through all the sprinklers in the kiddie area while the rest of us watched in amusement. AJ loved the lazy river, and so did Teddy, especially all the sprinklers. We went down the waterslides a few times, which is Teddy's favorite part.

This is one of my favorite photos of the weekend!

It was incredible to meet Heather, who's basically a celebrity among our family because of how supportive she is of Teddy. Now Teddy knows there's a person behind the photos I show him when Heather shares pictures with us. Teddy adored her and was a bit infatuated with Steve (probably because he convinced Steve to give him a piggyback ride). This weekend reaffirmed our desire to get to Michigan to meet my running buddy Luke and AJ's running buddy Miss Bridget. We'll see ... we already started plotting doing the Detroit marathon in 2018 as a relay team of running buddies!

Tuesday, June 6, 2017

June Dairy Month

Growing up on a farm in Wisconsin meant that June was my favorite month of the year. It wasn't because school was out. (That happened in May when I was in school.) It wasn't because we made hay. (Hot, sweaty and itchy. But there was the occasional ice cream treat or popsicle afterward.) It was because June is Dairy Month.

For those of you unfamiliar with this wonderful tradition, June is the month we celebrate farmers and all things dairy. It meant our local bank always was stocked with cups of ice cream, so we begged to go to the bank. It also meant that on weekends, we went to a dairy breakfast if there was one in the area. A dairy breakfast is, quite simply, breakfast served at a local farm. Usually a shed for equipment is emptied, and tables are set up inside there for people. Breakfast could include any of the following: pancakes, eggs, sausage, cheese curds, cheese cubes, yogurt, applesauce, cinnamon rolls, juice, coffee, milk (including chocolate, of course) and ice cream. The really good breakfasts offer root beer floats or sundae toppings. The sketchy ones make you pay an extra dollar for your ice cream . The ones not worth going to don't have ice cream.

Yes, ice cream for breakfast. Welcome to Wisconsin in June. (Or my house on any given day ... kidding, of course.)

Funny story: AJ loved the eggs and asked to make them at home ... until he realized they were eggs.
Often, there's animals for children to pet, coloring books or activities, tours of the farm, wagon rides and such. It's an opportunity to support our dairy farmers while educating a bunch of town folk who might otherwise not experience a bit of farm reality.

And all this background leads to what we did last Sunday. We went to a dairy breakfast. Teddy thought the tractor ride was pretty cool. He thought the pancakes were delicious and thoroughly enjoyed his ice cream. (He ate his ice cream while AJ and their friend dug through a pile of sawdust for 18 minutes digging for change. AJ made a whopping $0.96, and their friend found $1.36.) He really liked petting the soft pretty lamb and the fuzzy bunny who shared the same name: Teddy.

Carrying on these traditions with my boys is pretty fun. I mean, who doesn't want ice cream for breakfast?

Seriously, farmers are pretty creative. They wanted the back where it bounced around the most.

Monday, June 5, 2017

Horse Show and Family Fun

This past weekend was everything good about summer all wrapped up into two days. Saturday was the annual horse show at Exceptional Equestrians, where Teddy attends hippotherapy. Since it was our first time participating, we had no idea what to expect and were pleasantly surprised by what a nice event it was.

Teddy thinks it's super fun to be in the back of a SWAT vehicle.
Teddy was fascinated by the SWAT vehicle that was there (because of the local police department's partnership with the barn for its officers who patrol on horseback). I'm pretty sure he's the first person who's ever licked that SWAT vehicle. And one officer now has Teddy drool on his helmet strap, but Teddy thought he was cool wearing the big helmet.

This was how happy Teddy was to show off his skills. (Or just ride his horse.)

My mother, aunts, cousin and her child came over for the day, so AJ had a friend to play all the little games. They both walked away with armfuls of loot, plus balloon animals. Dave's folks came as well, and they thoroughly explored the SWAT vehicle as Teddy kept leading them there while the older children played games.

Teddy's trademark smile.

Teddy rode for about 15 minutes with 3 other riders. He loves watching other people and smiles when he sees them, so he had a huge grin on his face most of the time. He did an awesome job telling his horse to start walking by patting her. At the end, each of the riders was presented with a trophy, which Teddy thought was pretty darn awesome. (And Teddy has a cool shirt from the event that he needs to grow a bit to fit.)

Hey look! They gave me this shiny thing!
We stayed for AJ to ride during the break, and he thought it was pretty neat to ride a horse. Then we ate lunch there, supporting the barn while enjoying burgers and brats.

AJ enjoyed riding his horse. It was neat for him to get a chance to ride.
After the horse show, we went to Bay Beach with my family. Bay Beach is a small amusement park in Green Bay with rides ranging from a quarter to a whopping dollar (for the roller coaster). For $20 of tickets, we had a couple hours of fun with every adult enjoying at least one ride. Trust me, the kids enjoyed all the rides. Teddy still loves the carousel, but he thought he was pretty darn cool riding in a little car ride by himself. (There were a few rides we felt comfortable having Teddy ride alone because they had seatbelts to contain him and were pretty low key. Let's just say that when Dave put Teddy on the swing ride, I headed the opposite direction for the bigger swings to avoid witnessing that. It turned out fine, though.) I thought it was pretty darn cool that Teddy could walk up some of the 3 flights of stairs for the giant slides ... last year I had to carry him the entire way up!

It was an absolutely perfect day spent with family making memories!

Wednesday, May 31, 2017

The Difference A Year Makes

One year ago in May Teddy started taking his first independent steps. He wobbled like he would tip over with each step, but he took 3 steps. Then 4. Then 5.

Walking was not easy for Teddy. (What's the first clue? That it took him until he was nearly 3 years old to take independent steps?) But he was determined to keep up with AJ and explore anything and everything. By the end of last summer, Teddy was walking further distances with two hands held for assistance, shorter distances with one hand held for balance and brief distances independently. The instant he encountered uneven terrain, he'd drop to the ground instead of attempting to navigate it. His arms were constantly flapping around for balance.

When Teddy started school last fall, we sent along his gait trainer to use in the hallways and gym, as he didn't use it much at home for the shorter distances (other than crashing into our walls). At school, he preferred to crawl or hop because it was faster but periodically would choose to walk from place to place. At home, he walked more and more.

In winter, he walked on slippery snow for the first time by himself. He used two hands for assistance less and less. He got into more and more trouble. His arms gradually spent more time at his sides rather than flailing for balance. But he walked into every door or wall that stood in his way. His speed was full bore or crash into something to stop. We changed all the handles on our cupboards after he nearly poked his eye out with one of his crashes.

In spring, his gait trainer came home because it was collecting dust at school. That goal of walking to and his classroom? He had mastered it. His teacher said how nice it was that Teddy could walk places and allow other friends the opportunity to ride in the wagon occasionally. He had learned to control his motions enough to stop and change directions with relative ease. (He still did the occasional tumble over mid-stride, and I tried not to laugh as he toppled backward into the bathroom while walking forward across the kitchen. How do you even do that?)

This month, a year after he started walking, Teddy walked across an uneven, soft farm field. He transitions from grass to smooth services without pausing. He is attempting to walk up every hill or uneven obstacle he can find. He'd rather step on the objects instead of stepping over them in physical therapy. He's not running, but he's about as fast as he can be without running. His hands are going back up again, but now it's to play with his hair or be silly instead of flailing for balance.

Yesterday I watched Teddy take the walker that his physical therapist had pulled out for him to use for balance while stomping and kicking. He took it up and down the hall for a stroll, and it looked ridiculous, quite frankly, because he had no need for such a thing.

And yet there was a time we wondered if he'd ever be able to walk independently ... the difference a year makes indeed.

Thursday, May 25, 2017

Farm Therapy

We spent Mother's Day weekend at my parents' farm, and both boys thoroughly enjoyed their weekends. They spent the majority of their time "helping" my dad and uncle. They rode on the 4-wheeler, in the golf cart with my 94-year-old grandpa and in the tractors. They were covered in dirt from head to toe, and Teddy licked the windows of  the tractors clean ... ish.

This window is delicious!

Since Teddy's favorite place to be is outside or in a cool vehicle, he couldn't have been happier bouncing from one fun farm toy to the next. He actually rode in a tractor for nearly a 2-hour stretch, which is rather remarkable for his attention span (and the sanity of my uncle if we're being honest).

When we first arrived at the farm, Teddy made a beeline straight for the first tractor he saw. He circled it and couldn't seem to figure out why no one was there to give him a ride. He got his rides soon enough and apparently decided he was capable of climbing all the way up the ladder to the tractor. When you look at the pictures, you can appreciate the muscle coordination, planning and strength that went into that feet for this little daredevil.

At least the ground was soft.

But he made it. And he's rather proud of himself. And I'm proud of him.

Teddy's making progress in scooting along in toys and is experimenting with pedaling. He understands the concepts and is starting to get a few rotations in with the pedals. He had fun playing on a tractor more his size when he couldn't convince the adults to give him rides.

Little farm boy.

If you've never walked across a farm field, you might not appreciate that it's not the easiest walking because the ground is uneven and quite soft. That didn't stop Teddy from walking darn near everywhere in the field when the tractor was stopped to reload seed to plant.

video

After all that hard work, Teddy found a new way to ride in style. His favorite thing about my grandpa used to be his cane. Recently my grandpa switched to using a walker more of the time to help him get around easier, and Teddy thinks that's even better than the cane as a toy. (But he still was happy to have the cane to use as a weapon while riding!)

This is one of my favorite pictures! They're both so happy.

Monday, May 22, 2017

Reasons Why I Never Opened Teddy's Final IEP Until Tonight

Direct quote from IEP:

The IEP team determined that the specificity (wait, in the actual IEP it's misspelled as "specifity") and amount of instruction needed to meet all of Teddy's goals and objectives could not be met in general education even with supplemental aides and services.

Yeah, that about summarizes it. Do I really need any other reasons?

Tuesday, May 16, 2017

World CDG Awareness Day

May 16 is World CDG Awareness Day.

So you ask, what in the world is CDG? CDG is the abbreviation for Congenital Disorders of Glycosylation. See why it's referred to as CDG? The oversimplified explanation is that this is a group of disorders that people are born with that affects how cells function on a biological level. This group of rare disorders includes Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1), which is Teddy's diagnosis.

Given the rarity of CDG, including Teddy's diagnosis, we want to do what we can to raise awareness. Awareness is important to us on a personal level because we want other families with this same or similar diagnosis to know they are not alone, that the prognosis may not be as bleak as portrayed in the limited medical research and share the amazing support group of families with the diagnosis.

Also, awareness is the first step in generating interest. Interest is the first step to inspire someone to want to do research. Research is critical when you have a diagnosis like MCAHSS1 with less than 50 known cases in the entire world. There's not much there to research and not many reasons to invest money into that research.

But I have one really cute and important one:


So, we'll be wearing green today for World CDG Awareness Day. And maybe, just maybe, next year I'll be on the ball enough to get shirts made for our family.

Thursday, May 11, 2017

Touch a Truck

Yesterday I took the boys to something called Touch a Truck, which was basically a collection of large vehicles on display for children to explore. This was the first time we ever attended the free event, and I'm glad we arrived a bit early because the parking lot was jam packed when we left.

Our first stop was one of my (and AJ's) favorites. It was one of those advertising trucks with clear glass, so you can put in different advertisements or have people or things on display inside. AJ and Teddy got to trace their handprints on the glass. (AJ might be biased because this truck gave out quarter counters to help children save $5, loaded with the first quarter.)

From there, we checked out a police SWAT vehicle, pickup truck, semi truck, tow truck and mail truck. Teddy was so excited to climb into all these vehicles that he did an amazing job with steps, lifting his legs with no prompting even for some steps that were twice as high as a standard stair step! Perfect physical therapy for him!

I really hope this is the last time Teddy's in the back of a police vehicle ...

I was surprised that every truck had some sort of treat for the boys, whether stickers, pencils, candy or cookies. AJ and Teddy were in heaven between all the vehicles and treats (aside from the loud horns for AJ). We passed the lines for a few things like the street sweeper and snowplow, but we managed the fairly long line to explore the fire truck.

Teddy and AJ both loved the fire truck! They got to sit in the drivers seat and then explore where the other firefighters ride. As one firefighter lifted Teddy into the truck, I got to chuckle. "Ooof, this kid is heavy! Wow! He's really solid. He weighs a lot more than it looks like he does." Maybe he was surprised because he saw me carrying Teddy and helping him in and out of the front of the truck. Or maybe he just expected Teddy to be a lightweight. Maybe he was expecting a child without hypotonia who supports more body weight. Regardless, I chuckled. When a firefighter, who's trained to carry fully grown adults out of burning buildings, says my child is heavy ... well, that's saying something. 


How cool is this? They were the first handprints in the truck.

Our final stop was a transport truck, where Teddy proudly walked up the ramp and then all around the inside trailer. Aside from the fire truck, that was his favorite. There's something about the freedom to roam in a vehicle that he absolutely loves, and this one had space to roam.

We may have only been there an hour or so, but we had a lot of fun and left with very full pockets and big smiles.

Tuesday, May 9, 2017

Get in Line

I'm glad my mom was in town last night. She popped over for a quick, purely social visit instead of me abandoning her to watch our boys, which is usually the case. She arrived in time to head to the weekly MyTEAM Triumph training run with Teddy and me. My mom's been at two of Teddy's races, so she's familiar with MTT. Last night gave her the opportunity to witness firsthand how amazing this group of people is.

Teddy's angels are the folks in the neon green and bright blue shirts.

I was planning to run with Teddy, which is usually the case. Instead he ran with two of his angels from the Oshkosh 5k, a husband and wife duo. That gave me the opportunity to (nearly die because my co-angel flies faster than me) spend time with another captain. We were the first team back, so I got to watch Teddy's angels run him back to the meeting area. I heard the woman say that she got to hold his hand for half the run because he kept putting his hands on the wheels. It wasn't a complaint. It wasn't "I had to hold his hand. He's really not safe." It was, "I got to hold his hand."

Then, after Teddy's angels complimented Teddy's smile and his personality, they asked if he already has all his angels for the Bellin Run, the next run he's doing. I explained that his running buddy from Michigan from I Run 4 is coming to be his angel, along with her husband. Someone else joked that they'd need to get in line.

After I shot them down on that opportunity, they asked if he liked bike rides. They said they'd love to take him for a bike event if we thought he'd enjoy that. Unfortunately, the bike event they had in mind is when we're on vacation this summer, but how amazing to want to include Teddy in something that isn't even a MTT event!

The icing on the cake was when I finally pulled Teddy away from the large truck that stores all the race chairs. (Well, that was the worst part of the night for Teddy. His highlight was when I finally let him explore the truck after the training run.) When Teddy's angels saw how much he liked the truck, the guy asked if he liked all big trucks, including fire trucks. He said that when his work does their open house this fall, we could see about getting Teddy to come through if it worked for all our schedules.

Me blocking Teddy from the truck. He was determined.

This is exactly what MTT is about. It's not just racing and competing and giving our captains the opportunity to fly. It's about building relationships with others and helping those with disabilities become more fully included in their communities.

But if you want a shot with Teddy, I guess you have to get in line. He's a pretty popular dude.

Except when I need someone to watch him while I'm working or out of town. Then my mom somehow gets that first-in-line spot. ;-) Thanks, Mom!

Tuesday, May 2, 2017

The Rest of the Story

I grew up listening to Paul Harvey on the radio, often waiting in the farm truck to hear "The Rest of the Story" before heading into my grandparents' house for lunch. If you're not familiar with Paul Harvey, this was a segment where he would tell, in his gravely voice, some unknown details that really made something special.

With that preface, read the rest of this blog post in a gravely voice.

I shared earlier this week how a stranger stopped in his tracks to let Teddy cross the finish line ahead of him at the Oshkosh 5k. It was incredibly touching because this person was about to be the second place winner of the entire race, and he gave up that moment to help Teddy celebrate his finish.

Well, last night was a celebration dinner at a local restaurant for the myTEAM Triumph captains, angels and volunteers to share our stories and experiences from the race and build upon those relationships. The person from MTT who coordinates everything in our area said she hoped we could make it because she had a surprise for us.

It turns out she was able to locate the man who let Teddy cross first, stalked him a bit as she said, and invited him to come meet with the group. So we were able to meet Andy and thank him in person for his act of selflessness. The folks from MTT gave him pictures from the finish as mementos of his race day.

Meeting Andy showed what a remarkable person he was. First, I can't imagine being invited by a group of strangers to come meet them at a restaurant and actually showing up. Second, he treated both captains who were there as individuals, interacting positively with both of them. Third, he wanted absolutely no recognition and didn't think what he did was a big deal at all. He was amazed by how many views the video had received online.

In fact, he thanked us for letting him meet Teddy. He said that when he saw Teddy about to cross the finish line, he didn't want to take away from that moment. His direct quote was, "You could just see the joy in his face when he crossed the finish line."
 
Thanks to Christina from MTT for capturing the meeting of a true angel and Captain Teddy.

It was an incredible evening that left my heart so full. Not only did Teddy get to meet Andy, but we also got to spend a bit more time with two of his angels and others who fully embrace Teddy and our family. 

So there you have ... the rest of the story.

At least until we convince Andy to run as an angel for MTT and get him to be on Captain Teddy's team for an event. Then I'll write another post with the same title.

(And Dave called me weird for quoting Paul Harvey. I think he's the weird one. Who wouldn't quote Paul Harvey?)

Sunday, April 30, 2017

Race Days are the Best

Teddy completed the Oshkosh 5k today, which was his third race with myTEAM Triumph. I've written about MTT in the past here and here. Short summary is MTT is an incredible organization that partners angels with captains like Teddy who otherwise wouldn't be able to participate in these type of athletic events.

When I saw a call for additional captains, I signed up Teddy since we were around this weekend with me registered already for the half marathon. I'm so glad we did because today was one of those days that makes my heart so full and so happy.

Teddy and I got to see the MTT support van with Teddy's smiling face!

A few captains were unable to make the race because of rather cruddy weather, barely 40 degrees with the threat of rain and gusty winds, so Teddy had several extra angels. He absolutely loved all the attention!

Teddy loved having all the extra angels today!

I had hoped to catch up to Teddy because the 5k ran the same first mile as the half marathon, but his team was too fast. No wonder, they were the first MTT team to cross the finish line. In fact, they were so fast (with their head start before the 5k started) that only one 5k finisher crossed the finish line before them. The person who was about to finish in second place stopped to allow Teddy and his team to cross. When Teddy's angels attempted to wave this person past to his 2nd place finish, he insisted in walking across with Teddy.

Notice the man in blue cheering Teddy across the finish line!

I didn't witness it because I was somewhere on the half marathon course, but from the snippet of video, pictures and descriptions from my family and the MTT organizers, it was one of those magical moments.

Teddy thought his trophy was pretty cool.

So thank you to the man in blue who let Teddy finish ahead of you. Thank you to his enormous team of angels who made the day special for him. Thank you to his angel Sheila for the two autographed children's books that she authored and gave to Teddy. Thank you to my family for cheering on Captain Teddy. Thank you to MTT for making days like this possible.

Monday, April 24, 2017

Denied

December was the last time Teddy had outpatient physical therapy approved by Medicaid, which is his secondary insurance coverage. January is when the denial for PT arrived, after a few weeks of processing. The first week in March is when the hearing happened, via telephone of course to prevent me from dramatically marching Teddy into the hearing to show everyone why it's obvious he needs both outpatient PT and PT in the school setting.

I do realize, of course, that my dramatic entrance entrance would have been followed by me spending the entire hearing wrestling Teddy, which wouldn't have been overly effective. Not that it matters because last week in mid-April is when the hearing decision upholding the denial arrived in our mailbox.

It took 4 months to go through the process to get told there's no way Medicaid will cover PT for Teddy through outpatient clinic while he's receiving it in the school setting ... but we could file a request for services now to see if Medicaid will cover PT during the summer since Teddy doesn't qualify for summer services through the school. (That's a whole other bucket o' slimy worms that I'm not going to dig into right now.)

Let me do the math. Mid-April plus 4 months equals mid-August. That's right when Teddy's about to go back to school where he'll be getting PT services again. And that means, they wouldn't cover services because it would be duplicate services.

What are the odds that Medicaid grants the request right away for summer? How much will my PT hate me if I make her go through all the paperwork and process all over again? Why do we have to wait so long to get an answer on therapy ... and why do we have to request services every 3 months or so? How on earth does OT get approved right away for Teddy (not that I'm complaining!)?

So for now, we say to heck with Medicaid. We're trying to work with our clinic to run his therapy services for PT through only our primary insurance, which theoretically will work to get Teddy the therapy that benefits him.

And we're hoping it works for speech, too, because we just received that denial. I'm not sure I have the wherewithal to go through that appeal process, only to have it denied with the exact same language as the PT hearing decision I have in my hands.


Wednesday, April 19, 2017

Teddy and the Easter Bunny

Teddy's not a big fan of costumed characters, so visits with the Easter Bunny in past years have involved tears. Well, this year with Teddy's increased mobility, he simply hopped off the bench and walked quickly away from the Easter Bunny at our local grocery store ... all while AJ tried to hold onto Teddy for a quick picture. The Easter Bunny tried bribing Teddy back with candy, but Teddy was not going anywhere near him.

I'm leaving now. Right now.

Even though Teddy may not care for the Easter Bunny, he was plenty happy to play with all the treats he got from the Easter Bunny. The Easter Bunny left him a cowboy hat at my parents' house, which Teddy finds fascinating. He's worn it far longer than I'd have imagined, and the strings are absolutely delicious. An added bonus is that AJ's only lassoed Teddy one time around the neck while practicing his roping skills ... thanks Grandma and Grandpa.

This cowboy was calling to say there's a new sheriff in town.

Then the Easter Bunny made a stop by our house with sand castle buckets filled with some treats for the boys. The Easter Bunny brought Teddy therapy putty, which is like Silly Putty. Teddy got two containers to try, and the rest are tucked away for later. It was a good opportunity to give him something like this to help with his fine motor development and give him some variety so he doesn't have just Play Dough to eat play.

The best trinket in Teddy's basket, though, was a bubble gun. It has a trigger like a gun, hence the name, and blows bubbles using battery power when the trigger is squeezed. It's absolutely perfect because for the first time Teddy can make bubbles himself. With us helping to hold the gun level (and keep it from getting tossed around when he gets excited), he can squeeze the trigger to make bubbles appear. It's an added bonus that he works on isolating his index finger, but it's so cool to see him excited to blow bubbles.

  video

This was one of those holidays where our boys were thoroughly spoiled, but it felt good. There was time with both our families, including my nearly 95-year-old grandfather. There wasn't the frustration that Teddy couldn't enjoy the activities or the struggles to find something appropriate for him. Those are the good holidays.

Now ... if only we could get these children to sleep. Let's just say we didn't need to wake Teddy up to be to sunrise service at 5:45 a.m. He was wide awake at 4:40 a.m. I might have carried him downstairs and deposited him with Dave's folks saying, "He has risen."

Tuesday, April 18, 2017

Pride and Prejudice

This isn't about the classic novel. It's about AJ reading 1,000 books. You see the connection right away, too, right?

When AJ's teacher sent a message to all the parents in his class that AJ was the first student to read 1,000 books this year, I was so proud of him. I immediately began sharing the picture to Facebook with a caption about how proud I was that AJ was the first child to read 1,000 books this year.

I'm hoping AJ learns to actually read sooner than later, so he can help Teddy read to 1,00 books.

And then I stopped short. Because I realized Teddy will not be the first child to read 1,000 books in his 4K class. I realized that if Teddy ever learns to read, even a few sight words, we'll be so much more proud of him than we'll ever be of AJ for reaching this 1,000-book milestone. I realized that the lessons we've learned with Teddy about it being fine to reach milestones on his terms should apply to AJ.

But it's hard.

I'm still incredibly proud of AJ and happy to see how proud he is of himself. He has two parents who were academic overachievers and still are overachievers. We were never content with any grades less than As. We even discussed before having children how we thought it would be a challenge for us if we had children who weren't academically gifted because we wouldn't understand what that was like ... or if we had children who didn't apply themselves academically.

And then we had Teddy, who really creates his own category. That probably puts even more pressure on AJ, not that we would ever intentionally voice it to AJ. He carries the brunt of so many hopes and dreams that we had for our children before they were born. We want the best for both our children, but the reality of our world is that the best looks different for each of our sons.

Then again, the best looks different for each person in this world. My best is not your best. AJ's best is not Teddy's best. And that's OK.

Thursday, April 13, 2017

The Crying Mom

There are people who are cry publicly and people who don't. For most of my adult life, I've been in the group of people who don't cry. Working in Human Resources, I've had many tough conversations with people and pulled out the Kleenex box plenty of times for all those criers. There may have been a few times I barricaded myself in my office or had tears streaming down my face in my car as I drove out of the parking lot, but I was never the one to cry at work.

Quite simply, I took great pride in my ability to mask my emotions. Then along came Teddy. And that little bugger has ripped of that mask covering my emotions more times than I can count, including at his IEP this week. (An IEP is an annual meeting to review progress and determine goals and supports needed for the upcoming school year.)

We knew his IEP would determine where Teddy is placed for 4K next year. The options within our school district include traditional 4K classrooms, an integrated 4K classroom or an intentional 4K classroom. We also knew that a traditional 4K classroom is downright laughable for Teddy. The integrated class is co-taught by AJ and Teddy's teachers, with Teddy's teacher there to help modify the curriculum for those students who needed that support. The intentional 4K is the class for students who need such a high level of support, although they may integrate into a traditional class for brief periods as their abilities (and IEP goals) allow.

We knew Teddy's teacher would be able to make the best recommendation for Teddy to be successful because she's familiar with Teddy and how he does in a small setting as well as how the integrated classroom functions. We also knew that realistically the recommendation would be for the intentional 4K. I braced myself for this, having sobbed after hearing the options on the phone one day because I knew in my heart where Teddy would be placed. I psyched myself up on my run the morning of Teddy's IEP and felt comfortable with what his placement would be.

Yet, when the recommendation was made, I couldn't stop myself from crying. I thought I had almost managed to cover it up, wiping away a single tear nonchalantly, but then those tears kept coming. One of the therapists pulled my old move by quietly handing the box of Kleenex to me without judgement. I tried to joke saying, "I wasn't going to be that mom, but I guess I was anyways."

I could pretend that I was really disappointed because I wanted Teddy to remain at the same school with the same teacher (and AJ's teacher as well, who is great with him!) and most likely the same therapy team.

The reality is that, for me at least, it's really hard to hear that your child is so affected by his disability that he needs the most specialized instruction available. It's the same as when Teddy's teacher said it's so amazing to see Teddy walk and try to run across the gym chasing his peers. She said it's so cute that they wait for him to touch the wall before they run back across the gym, sharing it as a cute example of Teddy interacting with his peers. What I heard was that our son is so disabled that even all the other kids with disabilities accommodate our son.

And the fact is that none of this changes a damn thing about Teddy. He's the same adorable child who can disarm just about anyone with his megawatt smile and deep dimples. He's the one who amazes me when I realize the "mamama" that sounds like AJ said it came from Teddy's mouth. He's the one who still makes me do doubletakes when I see him walking with such relative ease and speed. He's an incredibly determined little boy who works so much harder than anyone else I personally know to do what he does with a remarkably cheerful attitude (unless we're short on sleep and refusing naps, which I'm not even going to touch today).

Seriously. That smile. Those dimples.

Nothing his teacher or support team said change any of this. And nothing they said was bad, mean or untrue about Teddy. It's just that hearing someone else point out reality, even in the kindest words, sometimes hits you hard ... because you live that reality and it's so familiar to you.

There is absolutely nothing bad about Teddy being in the intentional 4K. I know it's the best setting for him where he'll be able to make the most progress.

I guess I just need to find some superglue to keep him from ripping off my mask for my emotions time and time again.

Sunday, April 2, 2017

"Good job Teddy!"

As I was upstairs this evening finishing laundry and dishes, I heard AJ exclaim from downstairs, "Good job Teddy!" I immediately stopped what I was doing to listen to the exchange and heard AJ praise Teddy again.

This spontaneous praise, when only the two of them were in the room together, stopped me in my tracks. The thing is it's not unusual to hear AJ praise Teddy. It happens at least every couple days, if not every day. Or, AJ will try to encourage Teddy to do something new or different ... to teach him a new skill, as AJ would say.

These two are the best of buds. (Except when they're not.)

Lately I've been pondering how having Teddy as a brother molds AJ now and will impact AJ in the future. This is something that's always in the back of my mind, but Dave questioned me about it a few days ago and then I read an article on 8 ways children are affected by having a sibling with a disability. I know there will be challenges, frustrations and difficult conversations in the future.

But for now, I'll cherish the empathy and compassion I see developing in AJ. At a party today, a group of kids ran into a bedroom, shut and locked the door with Teddy on the outside. I called inside to AJ and asked him how he felt when earlier the girls had excluded him by saying "No boys allowed" and how he thought Teddy might feel being left out of the fun. Almost instantly, with just that prompt, he unlocked the door and encouraged Teddy to come inside.

When he told me his classmate didn't have crayons on the bus this past Friday, he also told me that he shared his crayons with her. (Good thing he took that larger pack rather than the 4-pack I had suggested. Oh yeah, that might have led to one of the meltdown I mentioned earlier.) He also gave that girl the picture he colored because she really liked it.

I'm certainly not saying that you need to have a sibling or family member with a disability to become a compassionate, empathetic person. But, at least for AJ, I see that as one of the benefits of having Teddy as his brother. He's learning to be more compassionate, empathetic and inclusive at a much younger age than most.

Wednesday, March 29, 2017

So Sick of Sickness

I feel like my house is a petri dish. Well, not so much anymore now that my living room is piled with 6 loads of unfolded laundry and bedding ... and that I used pretty much an entire spray can of Lysol disinfectant in the past 24 hours ... and that I used two bottles of homemade essential oil disinfectants ... and that both children have antibiotics in them and are hopefully no longer contagious.

For the past month, we've cycled through viral infections, impetigo, colds, probably more viral infections and now strep throat. I've determined AJ and Teddy should really stay healthy because antibiotics don't seem to work so well for them. They both inherited my allergy to the penicillin family, which rules out a large number of drugs. Teddy reacted to the cephalexin from the impetigo. (Let's just say that what we were pretending was dry skin went away really quickly when he stopped that medication.) And we're hoping 3 out of 5 doses of azithromycin are enough to have wiped the strep out of AJ's system since apparently he develops a really cool itchy rash from that medication. Seriously, if they keep this up, they're not going to have any antibiotics available to them.

AJ was diagnosed with strep Friday evening (fun Friday night date!), so we began watching Teddy closely for fever or rash. Sunday afternoon he had a mild fever, so when he woke up with a fever of 98.8 Monday morning, that meant he went to the doctor instead of school. Turns out he did indeed catch his brother's strep (and then probably caught a cold and/or who knows what from the waiting room since he still feels the need to taste test inappropriate things).

I'm glad we took him in with such a minor fever because the diagnosis was confirmed. I feel like we should get a gold star for parenting a non-verbal child who can't tell us in a way we can understand that his throat hurts, that he doesn't feel good or that he's sick. We used to be overly paranoid with every fever but have gotten a bit more lax about minor ones where Tylenol or Ibuprofin do the trick because it's been so long since he's had a seizure. It's so hard to know, which is frustrating. Yet I talked to a mom whose daughter is tube fed, so she doesn't even get the potential warning from lack of appetite.

Who knows? Maybe Teddy had strep before AJ, and we just never caught it. Not that I want Teddy to have strep again ... but next time it'd be nice if he got the really distinctive rash AJ did. That might help us figure things out a bit sooner.

Thursday, March 23, 2017

I Love My Lips!

There's a Veggie Tales song that Larry the Cucumber sings called, "I Love My Lips!" Rather than a detailed explanation on Veggie Tales and singing cucumbers, let's just go with it's a Christian-based series for children that included movies, books and more. (And I was into Veggie Tales when I was in a high school ... guess I never discovered it as a child and just liked it when I did.)

Anyways, that's a pretty accurate description of Teddy's last two days. At OT yesterday, he was poking his index finger into peanut butter and then sucking it off. The idea was to focus on isolating and strengthening his index finger while keeping him motivated with food. (He's my child. He loves peanut butter.) Well, he got a glob of peanut butter on his upper lip, and he actually noticed it. He tried to figure out what was there using his tongue, and once his OT showed him a mirror, he was able to lick off the peanut butter.

Now, I get it's not remarkable for most people to lick food off their lips. But this was the first time I could recall Teddy noticing the feeling of having food on his lips and then maneuvering his tongue to get it off. For him, that's quite the accomplishment of cognition, motor planning and muscle coordination.

Don't get me wrong, the kid licks and sucks everything. Handle on the shopping cart. Yep. Doorknob. Yep. Heating duct in our basement? He even convinced his older brother to try that one. But to stick out his tongue to retrieve food from his lips was a first.

Then tonight during his bath, AJ was blowing bubbles in the water, and Teddy joined right in. His swim teachers have said he's blown bubbles a few times, but to be honest, I thought they were exaggerating what was really his attempts to see how much of the pool he could drink. But tonight was parent-verified bubble blowing.

It still feels weird to be excited about licking peanut butter off his lips or blowing bubbles in the bathtub, but I'm OK with weird.