Tuesday, May 31, 2016

Captain Teddy

Even before Teddy was born, I've been inspired by myTEAM TRIUMPH at different running events. It gives me a boost of energy (granted, it only lasts maybe 100 yards or so) to cheer for them, calling out encouragement for the Captain and Angels. myTEAM TRIUMPH designates able-bodied runners as Angels, who push individuals with disabilities in adapted equipment that enables them to safely and fully participate in a variety of events. These individuals are the Captains of their team, and they receive much cheering and encouragement along the course.

The thought had crossed my mind that I'd love to be an Angel sometime, and I even looked into it a few years ago but never made the commitment. I was amazed to discover myTEAM TRIUMPH participates in events ranging from 1-mile runs to a full IRONMAN. Not only do they have adapted running chairs, they have adapted biking chairs and special boats to pull Captains for swim events. Let's just say that I immediately discarded the thought of being an IRONMAN Angel. (The only way I'd become an IRONMAN Angel is dying in the process of trying to complete an IRONMAN.)

As Teddy has grown older, and we've learned more about what his world looks like, we thought myTEAM TRIUMPH would be a great opportunity for Teddy. He's such a social little boy, and we think he'll love cruising along to cheering crowds.

When I asked if anyone was interested in being an Angel for Teddy on Facebook a few months ago, the amount of support was overwhelming. I had a number of people who didn't quite realize that being an Angel means running (and pushing) the entire length of the event. I think perhaps some of those eager volunteers will be along the way cheering for Teddy, rather than pushing him. I easily found two others willing to be Angels for Teddy since Angels run in packs of three (one to push, one to engage the Captain and one to clear the way so to speak). I'm beyond excited to be an Angel for Teddy and to help give him this experience. (I had to restrain myself from signing him up for multiple events ... maybe next year.)

We went to our first training run tonight, but it was a bit less exciting than I anticipated. I'll blame the rain for scaring off everyone except for Teddy's angel Ashley. The three of us still had a really good time running, and Teddy didn't get us too lost. Hopefully next time we go there will be a few more people.

We're signed up for the Fox Cities 5K on September 17. Since we're having AJ's birthday party later that day, it will save our families an extra trip by combining the two events into the same day. I'm sure I'll be wiped when I run the Fox Cities Half Marathon the next day, but it will be well worth it to earn my Angel wings with my son.

Wednesday, May 25, 2016

Who's Afraid of the Big Bad ... Doctor's Office?

When we visited my mom in a rehabilitation center following her knee replacement, Teddy was freaked out by her room there. At first I thought it was the contraption that automatically bent and straightened her leg, but that didn't seem to be it. Rather than fight it, Dave kept Teddy entertained in the common area, checking out fishies and scoping out the rest of the place. We chalked it up to Teddy being scared of seeing Grandma out of her normal environment and capabilities (although he had a blast with both her walkers).

Teddy was teaching Grandma how to walk.

So I was a bit surprised when I took Teddy to his neurology appointment last week when he cried when I set him on the scale for his weight. I became more perplexed when he continued to cry and act afraid when we went into the exam room. Teddy's norm is to engage new, smiling faces and attempt to take any of the objects they're using to get measurements because they are obviously toys for him. Instead, he whimpered and cried and eyed the nurse like she was Santa's helper the entire time. (That, folks, is not a compliment in Teddy's mind.)

He settled down and warmed up quite a bit as the appointment continued with his awesome neurologist, but he still wasn't his usually Teddy self. (He didn't even try to eat the doctor's pet parrot Jabber.)

Honestly, I'm befuddled as to what caused this change for Teddy because there was nothing traumatic (from my viewpoint at least) at the rehab place or the neurology office. No labs, no confining tests, nothing that would agitate Teddy (and even those rarely cause much more than a few tears while they occur). Although I'm happy to see him demonstrate his emotions and dislikes, why couldn't he develop a fear of being too high when he climbs onto the kitchen table instead?

Tuesday, May 24, 2016

Typical Teddy

Yesterday was one of those days where I was able to see how much progress Teddy has made. It's not that he did anything astonishing for the first time. It's that I was able to take in the full picture of all the little things that even three or six months ago weren't in his skill set.

He spoon fed himself a bowl of applesauce at breakfast, making it more than halfway through the bowl on his own. He holds the spoon, uses the right end and understands the motions. And he never gets frustrated because there's food on the other end of the activity. He also used his fork last night to eat a piece of cake mostly independently. (I still lick my plate if it's really good frosting, so I'm not going to fault him for that.)

We're in the midst of a really fun landscaping project where we dig out all the slate rocks surrounding our house, move them to our driveway to clean them and then add black dirt to slope away from our house. Then we'll get to place landscaping fabric and top with the cleaned slate, but we haven't gotten that far. Both AJ and Teddy are in heaven that we have a dirt pile in our driveway, plus rocks to play with and all sorts of shovels out for use (and play obviously).

Bliss is found between a rock pile and a dirt pile.

Teddy loves being outside and spent many hours there the past two days. He'll climb in the dirt pile, dig in it with a small shovel, bear crawl up the dirt pile and try to move around the big shovels. Then he'll take a break by pushing or climbing a wagon, climbing onto a tricycle for a while or splashing in our "swimming pool," which is really just a giant tote that AJ fills with water. Teddy's already figured out how to drink from the garden hose, which is absolutely awesome.

He loves to climb!

He's been doing quite a bit of bear crawling lately, especially while outside to give his knees a break from crawling and hopping unprotected on the driveway. He bear crawled the 5-foot section between the rock pile and dirt pile yesterday afternoon. Then last night he was very determined to get into our neighbor's driveway to explore the vehicle with the open back hatch. He tried to cross the yard and got redirected to our driveway, so then he bear crawled and crawled down our driveway and started up the neighbor's. His sheer determination and problem-solving skills amazed me ... but he still wasn't allowed to climb in their vehicle, especially covered in a mix of mud, dirt and water.

Check out that bear crawl action!

I'm not sure the boys have ever been as dirty as they have the past couple days, but it's hard earned dirt. The smiles and the memories will last longer than the dirt streaks on my kitchen floor ... hopefully.

Sunday, May 22, 2016


In the past few months, Teddy has shown an interest in our phones. He will still put them in his mouth but spends more time holding them and trying to make things happen on the screen. He's managed a selfie once on my phone before today.

When he was supposed to be napping, ahem, he decided he would much rather play with my phone. (This was after I abandoned all hope on this nap concept.) I deleted more than 50 blurry, unrecognizable photos that he took with glee, giggling as the clicking sound rapidly repeated. However, two of his photos actually turned out as recognizable selfies.

I like to call this "How Do My Boogers Look?"

Mind you, they're mighty blurry. His photography skills don't include holding the phone still. (Then again, neither do AJ's.) And my phone is usually blurry for self-taken pictures because of the whole Teddy touching my phone, drool and such.

This is titled "I Stole Mom's Phone During 'Nap' Time."
It's fun to see him have an interest in and doing what his therapists would call age-appropriate behavior. It's even better to have the souvenirs on my phone.

Saturday, May 21, 2016

Clifford and Curious George

On any given week, we head about 25 minutes away for three different therapy session: OT, PT and speech. Sometimes it's three separate days and trips. Other times we pull a doubleheader. Sometimes those go fine, and sometimes Teddy is ready to be done before we're halfway through.

Given how I never know how therapy will go, I appreciate any little thing that makes the appointments smoother. Last week Clifford was at the clinic, as part of a sponsorship with the local minor league baseball team and PBS. AJ was beyond excited to see Clifford, and I was pleasantly surprised by how tolerant Teddy was of the big red dog. Given his distaste for Santa and the Easter Bunny, I didn't think he'd have much to do with him. After his initial skepticism, Teddy was cool with Clifford and even managed a photo next to him. AJ thought it was so cool that we rode the elevator up with Clifford and got to be the last kiddos to say goodbye to him and get all sorts of stickers, books and special attention.

AJ, Teddy & Miss Pam with Clifford!

This past week, Curious George made an appearance at the clinic. Teddy immediately was intrigued (and not terrified). He smiled and engaged with Curious George enough to give him a Teddy version of a high five, which then led to Teddy grabbing his fuzzy paw. We didn't have much time to hang out with him before we headed back to therapy. Teddy managed to do some activities really well, such as practicing eating with a spoon, but then he hit the point where he was just done ... even though we weren't done.

That's when there was a knock on the door, and someone asked if Curious George could come in for a visit. Teddy went from crabby to smiling in an instant. He again gave Curious George a high five, grabbed his monkey paw and even did OK with a small monkey hug. Teddy broke down when I made the mistake of trying to set him on Curious George's lap for a picture, but he calmed back down when he was not being handed to a monkey. (Sheesh, why would that freak anyone out?) The mischievous monkey left my boys a wooden puzzle as a parting gift and went on his merry way. We managed to finish a few more activities after that welcome distraction.

"I like his fuzzy hand ... Can I eat it?"

I'm so thankful for these type of opportunities. They become the highlight of the day for AJ, break up the routine for Teddy and make my days just a bit easier ... and more fun.

Just monkeying around with the boys!

Monday, May 16, 2016

World CDG Awareness Day

There is an ongoing movement targeted to officially declare May 16 as World CDG Awareness Day. CDG refers to Congenital Disorders of Glycosylation, which is the larger subset of rare diseases that includes Teddy's specific diagnosis. As a whole, CDGs do not have cures or even well-developed treatment options because there is relatively little known about each of these rare diseases.

This is exactly why there's a worldwide movement to designate today as the World CDG Awareness Day. Awareness of the existence of CDGs is the first step in a long journey to provide answers, hope and better lives to the families affected by these disorders. 

The thought crossed my mind to petition Wisconsin to issue a statewide declaration, but intentions didn't become reality this year. I'll put that on my list for next year.

In the meantime, I updated the blog's color scheme to green, which is the designated color for CDGs. And I'm respectfully asking everyone to consider signing this petition that is being circulated to submit to the World Health Organization: https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th

Thursday, May 12, 2016

Carrying Mountains

Life with Teddy is an emotional roller coaster. Sometimes, it's cycles of days, weeks or months where things are mostly positive and then a slump. And sometimes, in the course of a day, I manage to hit both depressingly low points and amazingly high points. The last week or so has been one of those funks for me, which is why this quote from Najwa Zebian struck a chord with me:

"These mountains that you are carrying, you were only supposed to climb." 

I feel as though I've been carrying mountains instead of trekking up them, enjoying the views and the hike along the way. This was what I needed to hear last night.

And then, of course, I had one of those roller coaster days today. While I was at work, I was typing a witty reply hinting about when I might be able to return to work on a schedule that resembles full time more than my hodgepodge of hours now. As I went to type, "It's only two more years before Teddy is in regular kindergarten," I almost ended up in tears. 

The reality is that Teddy will not be in regular kindergarten. He'll never be in regular school. He'll be in classrooms adapted to his needs that maximize his potential. He'll have a smile and personality that light up those classrooms. He'll be amazing because he's Teddy, but he'll never be regular. 

As his mom, that reality hurts sometimes when it sneaks up on me and makes me reword my e-mail to something along the lines of "It's only two more years before Teddy is in school for a full day." It's nothing, but it reminds me of everything.

After my work day, I picked up two very happy boys who spent the day playing outside at a park with their fantastic sitter. We came home to find a package from Teddy's running buddy Heather from I Run 4.

He looks so big opening his mail.
That's when my day went to top of the roller coaster, incredibly grateful for the support of our running buddies. While Teddy opened his mail, AJ responded to two of his buddy's messages, sending her more silly pictures and dictating his messages.
Teddy's too excited to hold still for a picture.
Teddy's buddy Heather sent him two medals, one from a 5k and the other a Darth Vader half marathon medal. Teddy especially loves the Darth Vader medal because the inside middle part rotates, so it's a perfect toy for him. Heather also sent him a runner version of Mickey Mouse. Teddy prompted attempted to nibble Mickey's nose while grinning his mischievous smile. Heather tucked in a Mickey Mouse tsum tsum (little soft Japanese-style toy for those as tsum tsum illiterate as me until I read the tag) for AJ, so he didn't feel left out. This package of goodies for the boys reminded me how lucky we are, how thoughtful people who were strangers 6 months ago can be and how good the view on the hike is instead of being buried under the mountain.

Both boys love their respective treasures!

Monday, May 9, 2016

Happy Belated Mother's Day!

Happy Mother's Day to all the mothers, including those who are maternal figures and those who yearn to be mothers. I hope your day was filled with a bit of extra-special love.

My mother-in-law helped AJ make me a pretty special card. As much as I love the treats (trust me, "Mom" didn't stand a chance against this mom), I was so impressed AJ did all the writing himself. He knows all his letters, but the patience to follow Grandma's instructions for that long is quite the feat. It helped that he had his two favorite cousins doing the same project for their mom, but still, I give him credit. And I appreciate the thoughtfulness of my mother-in-law.

The way to a mom's heart is with candy, especially if she doesn't have to share! ;-)
And in case you need a translation: Mom, you are the best mom in the Milky Way. You deserve a Payday. Relax and Take 5. You give us Mounds of love. We love you to Reese's Pieces. Love, your Sugar Babies AJ, Teddy & Papa

Tuesday, May 3, 2016

Legoland and More!

We headed down near Chicago this past weekend for some fun family adventures. Our first stop was the Jelly Belly factory for a warehouse tour and free samples. Jelly beans are not my favorite candy (by a long shot), but I can't get over the buttered popcorn and pancakes with maple syrup ones. The taste is spot on, which is crazy weird.

The boys enjoyed their fill of pool time both Saturday evening and Sunday morning before we went to our main adventure: Legoland. Let's just say I had two very excited boys (Dave and AJ) with this adventure, and that Teddy was a good sport. There was quite a variety of things for them to do, including a two small rides, lots of areas to build, neat models to enjoy (like a jungle room the boys thought was fun) and a large play area. Teddy's favorite were the giant blocks to build, crawl on top of and attempt to eat the moment I looked away. AJ loved most every thing, except any waiting and the fact he couldn't play with the pre-built fire trucks made of Legos that were glued down to prevent kiddos from wandering off with them.

Figures Teddy would go for the hook. That child has no fear.

The absolute best part of Legoland, for Dave and I, was meeting up with another family from the Chicago area with a child who shares the same diagnosis as Teddy. That was the reason for our trip, and Legoland was just the perfect meeting place. It was absolutely awesome to meet Sammie, her brothers and her parents. There was something so special about seeing these two children with the same diagnosis meet each other for the first time. She is the friendliest little girl who immediately wanted to show Teddy everything (and take his hand and lead him everywhere).

Sammie is almost 9, so it's incredible to see all the skills she's mastered, along with her similarities to Teddy. We recognize each child is unique, regardless of any diagnosis, but meeting Sammie gives us so much hope for what Teddy may be able to achieve. It was fun to see how Sammie and her brothers interact. It was also great to spend a couple hours chatting with her parents, learning when she hit milestones and more about their lives. And Dave discovered her dad fly fishes, so all was well in the world.

Sammie and Teddy, two very special kiddos, together!

Of course, we couldn't part Legoland without a Lego set or two. AJ picked an Angry Birds pirate ship, which he couldn't wait to open. He spent a good hour or more in the car entertained by playing with just the box. We also checked out a second Lego store, where David got his pirate chess set. AJ had to wait to build until we got home Monday afternoon, but the wait was worth it!

This boy is obsessed with his Legos!

We managed another round of swimming Sunday evening and again Monday morning before we headed to Milwaukee. We made a quick stop at the Mars Cheese Castle, which is filled with every edible Wisconsin souvenir you could imagine, along with plenty of non-edible ones. We met my aunt in Milwaukee and spent a couple hours at the Milwaukee zoo. The boys are a bit young to fully appreciate it, but we all had a good time checking out the animals. I think the elephants impressed AJ the most, although he wasn't a fan of the smells of the zoo animals. Teddy likes to watch the animals when he's able to notice them.

Teddy loves carousel rides!

The highlight of the zoo for the boys, though, was either the playground or the carousel. Teddy absolutely loved the carousel ride, as did AJ. Teddy had a grin the entire time and did a nice job of holding onto his pole. And the weather was finally nice Monday, so it was a perfect day for the zoo, after two days of drizzle and rain.

Teddy still is Teddy. You have to taste test everything.