Saturday, April 30, 2016

Three Steps at a Time

Last December was the first time Teddy ever took a step (actually two) without holding onto anything. Then he waited until about March before repeating it. He's been taking up to two steps once every couple days and is now doing it more frequently.

Yesterday was the most we've seen him walk unassisted. He showed his therapist two steps in the morning. Then last night he repeatedly kept taking two steps and then three!

video

He's been working so hard for so long, so these independent steps are huge milestones for him.

Does it mean he'll be walking all over the place in the next month? Not by a long shot, although his physical therapist encouraged us yesterday to redirect him to always be walking, either holding our hands, using his gait trainer or holding onto other objects for support, instead of crawling. Although that's not realistically going to happen (because I cannot shadow him every waking hour of the day), we'll do our best to encourage more walking and less crawling ... or bunny hopping.

Thursday, April 28, 2016

My Little Celebrities

I know I shared our experience with I Run 4 recently, but I have an update. AJ's running buddy Bridget contacts race organizers prior to events to see if she can score a second medal for AJ. When she contacted the organizer for the Flintstone Challenge, the request came back to do a feature about I Run 4 and our family specifically.

The Flintstone Challenge is a 5k run/walk sponsored by Michigan State University- Flint campus medical students that benefits the school system in Flint, Michigan. We are always more than happy to share our story because we feel it's important to create awareness for Teddy's rare disease.

We were asked a series of thoughtful questions, although it's a bit tricky to interview a 4-year-old. AJ's answers depended on his mood, so we did our best with that part.

You can check out the full interview online: http://flintstonechallenge.org/i-run-4-siblings

They also shared a copy of the event newsletter with us with a really nicely done article.


It's getting hard to live with these celebrities.

Sunday, April 24, 2016

Siblings

One of the first discussion points for us after Teddy's diagnosis was centered on AJ and what Teddy's diagnosis meant for him. It was easy to immediately jump to thoughts of guilt and worry that AJ wouldn't have a typical brother and that meant he would miss out on so much and shoulder responsibility that he shouldn't have to. Even during those first conversations, I tried to look for the positives of how Teddy's diagnosis would affect AJ.

This past week I had the opportunity to attend the Circles of Life conference and spent two days listening to speakers on a variety of topics from financial planning to advocacy for children with different needs. Overall, it was a really good conference, although I'll admit it was a bit difficult to be there and fully embrace the fact that I have a child with special needs. (That was actually one of the reasons why I wanted to attend.) I would have been much more comfortable attending to represent the non-profit service organization that is my employer, but my job was to be there as Teddy's mom.

I met some wonderful people, saw some amazingly cute kiddos and heard some pretty awesome stories. The final session included a guest panel of typical siblings who attended the conference with their families. These teenagers shared their thoughts on a few topics, including the hardest part of having a sibling with special needs:

  • The stares. It's don't like it when other people make fun of my brother for who he is.
  • It's hard not to have a sibling who understands you and who relates to you.
  • I understand it's not favoritism, but it's hard when my sister needs all my parents' attention.
These teens confirmed every worst fear I have for AJ and Teddy. But they also reaffirmed my hope and belief that AJ will be a better person because Teddy is his brother. When asked about the best part of having a sibling with special needs, the answer was similar from everyone:
  •  It makes me more understanding of others. I've learned not to judge other people because of how they look or act. I have more patience with people. I'm more accepting of other people. I'm a better person.
I also heard in their answers how fiercely protective they are of their siblings. Sure, they may not always like having a sibling with special needs, but they would be the first to stand up for them or their rights. These children were amazing, just like AJ will be.

Tuesday, April 19, 2016

Romans 12:12

One of the harder things when Teddy doesn't sleep at night, aside from losing much needed sleep, is all the time it gives me to ponder things. About a year ago, I was consumed with fear, anger, frustration and a feeling of complete helplessness after one of Teddy's seizures. I couldn't fall back asleep after Teddy finally succumbed to sleep, so I was searching for something: answers, peace, the ability to fall asleep ...

When I was a child, I read the Bible cover to cover, underlined favorite passages and jotted down lists of verses that resonated with me. That night I couldn't sleep, I looked up all the verses I had written down as a child until I got to Romans 12:12.

That was where I found what I was looking for: guidance, hope and a bit of peace.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."

It's applicable to nearly every situation for me.

Worried about the future? Let my hope keep me joyful.

Beyond frustrated because Teddy is screaming not sleeping? Be patient in my troubles.

Fall while running and land in a bush? Pray to thank God I didn't land in a cactus. (True story. Happened in Zion National Park this month.)

Every time Teddy has a seizure that turns our world upside down all over again? All of the above.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."

Sunday, April 17, 2016

Teddy Time

With Dave out of town for a trade show this weekend, I happily accepted my in-law's offer to watch AJ for the weekend. AJ got to spend the weekend playing with his three oldest cousins, getting spoiled rotten and loving every minute.

And I got some 1:1 time with Teddy. The last time I had any considerable amount of time with Teddy alone was after his last surgery in August 2015. My parents kindly took AJ for a week after Teddy split his stitches open, just to make life a bit easier without having to referee two children.

Teddy and I made the most of our time together. For the first time ever, I took Teddy running with me. The weather was absolutely gorgeous, so we hit the trail for my 6-mile training run. It's been probably close to 2 years since I've pushing the stroller while running, and the most I've ever ran with it before was 4 miles. Holy cow! I either forgot how much harder it is pushing a running stroller or I'm woefully out of shape. Since I have a half marathon in a week, I'm hoping it's not the latter.

All smiles after our run! (I was smiling because we were done.)

We got to watch my goddaughter at her first gymnastics meet. Teddy determined he would like free reign of the entire gymnastics gym. There's a lot of cool looking things to climb, plenty of things to hold onto and the flour is bouncy. What could be more fun?

We capped off the day with friends over for dinner and plenty of playing outside. We brought out the swings for the first time this year, and Teddy loved that. The best part is my good friend's daughters play extremely well with my boys, and they're pretty good about entertaining Teddy. It allows me to actually carry on a conversation without having to step away every minute or two.

My plans for Teddy's naps and when he went to bed were to spend my "me" time working on a painting I've wanted to do for about a year. I made good progress during Teddy's nap, which is good because he decided to keep me company until 10:30 p.m. Although he was tired, he simply thought I was too awesome to leave alone.

My house at 10 p.m. Perfectly normal, right?
Thankfully, the upside of only one child at home is that I didn't have AJ waking me up at 6 a.m. I got to sleep until nearly 7 a.m. and enjoy a whopping 20 minutes of time to read before Teddy joined me for the day. We enjoyed pancakes for breakfast and a bit of play before picking up AJ around noon.
If it exists, Teddy climbs it.
As I had two children screaming for more than 30 minutes on the way home, I truly appreciated the blessing of having the 1:1 time with Teddy. Trust me, it's much more relaxing to just have one child screaming instead of the second one screaming that it's too loud.

Believe it or not, I actually finished my painting!

Wednesday, April 13, 2016

I Run 4


In the past couple months, two complete strangers have become two people who bring an immense amount of happiness into our world. I Run 4 is a non-profit organization that matches individuals (children or adult) with disabilities with able-bodied athletes. The athletes dedicate their workouts to their buddies, and the buddies cheer on their athletes. It's basically the modern version of a pen pal. Instead of writing letters, everyone posts through Facebook. It's also one of the most positive groups I've ever encountered, with people cheering on each other and offering prayers and kind words whenever needed, even through the night. (I learned that last part on nights that I've been up with Teddy.)

When I signed Teddy up for a buddy in December, I was surprised that he was matched the very next day! Teddy's buddy is a wonderful woman named Heather who lives in Warren, Michigan. She is an awesome person who cheers on Teddy's accomplishments and makes our world better.

Heather loves Disney! (And Teddy!)
The timing of their match couldn't have been more perfect because Heather completed a Disney marathon about a week later. It may seem like a silly thing, but the picture she sent of her ready for her race brought tears to my eyes:

Seeing this still tugs at my heart.
The fact that someone who just "met" our son ran 26.2 miles with this on her legs, giving a voice to Teddy and encouraging our family, showed me how amazing I Run 4 can be. Heather is one of the first people I tell about Teddy's latest tricks because she's someone who selflessly has agreed to cheer on Teddy.

Because Teddy's non-verbal, I type all his messages for him. Teddy smiles, though, every time I show him a picture Heather posts. I also realize that in some ways Heather is as much my running buddy as she is Teddy's. Having her in our lives has been such a blessing, and I'm grateful beyond belief for the role she plays.

Not only can individuals with disabilities be matched, but there's a partner organization called I Run 4 Siblings: The Unsung Heroes. This group gives the siblings a spotlight, so I immediately signed AJ up for a buddy. It took us a few months to get a solid match for AJ, but it was absolutely worth the wait!

AJ's running buddy is Bridget, who lives in Flint, Michigan. She is an incredible woman who takes the time to acknowledge every one of the 25 silly pictures AJ may send as comments to her posts. She is someone who will be a fantastic role model for AJ as he grows older and learns about overcoming challenges and obstacles in his own life.

Bridget loves running races! (And AJ!)

Bridget is the perfect match for AJ! She sends him messages frequently, which he loves. She also answers every message he sends her. And trust me, since AJ is dictating his messages, they're often a bit unique.

Although it's not required or even implied with I Run 4, some buddies send medals to their matches. We just so happen to have buddies who've done this for our boys. Believe me, it's not about spending money, sending packages, etc. It's about the relationships and the support. But I won't deny it's an awfully exciting day if a package arrives from either Heather or Bridget.

AJ shows off his bling from Bridget's first run for him!
Since both our runners live one state away (and are only an hour apart from each other), I'm hoping we can meet sometime this year. I know both boys would love to meet their buddies in person, as would Dave and I.

I signed up to be matched the same day as Teddy. Teddy got his buddy the next day. It's been nearly four months, and I'm number 780 on the waiting list. This amazes me because it shows how many good people there are in the world that there's more than 2,000 people currently waiting to cheer on and support individuals and their families. I'm hoping to get matched in the next couple months, and I'm excited to be able to pass along some of the happiness, joy and support we've received.

Not only are there groups to support siblings, there's also a remembrance group called Keri On: I Run 4 Remembrance. It's one way to keep someone's memory alive and continue to share their story.

If you know of someone who would benefit from a buddy, please share this with them and encourage them to sign up through I Run 4. Remember, there's 2,000 people just waiting to cheer on people with different abilities and become one of their biggest fans. No buddy waits long for a match ... only the athletes.

Teddy's diagnosis comes with a whole slew of challenges and obstacles. At the same time, so much good has come along this short journey, and I count our running buddies as two of the blessings we've received.

Sunday, April 10, 2016

Making News

While we were on vacation, we got a message from our genetics counselor with an odd request (her words, not mine). The local newspaper, the Milwaukee Journal Sentinel, was doing a story on exome sequencing and looking for families to interview. We agreed without hesitation because we want to share Teddy's story and our experience with anyone willing to listen. We feel that sharing our journey could help others facing similar situations.

So, I did about a 30-minute phone interview while heading back to Las Vegas to fly home. We sent them some photos of Teddy late this week and waited patiently for the story to post online yesterday (at 9:30 p.m.)

We were a bit surprised to see this morning that Teddy made the front page of the newspaper, along with a huge family photo with the rest of the story. And one person already contacted me to get more information about the Facebook groups we've found. For me, that makes it absolutely worth including Teddy in the story.

Front page, lead story, charming Teddy.

Here's the link to the online version of the article: http://www.jsonline.com/news/health/although-still-in-infancy-dna-sequencing-rapidly-evolving-b99701088z1-375158841.html

There's also an interesting (at least to us) podcast where the reporters share a bit more that's not in the actual story: http://www.jsonline.com/news/wisconsin/behind-the-headlines-308783881.html

The story is a follow-up on a Pulitzer Prize-winning piece done about 6 years ago on one of the first cases of exome sequencing to diagnose and treat an individual, which was done at Children's Hospital. They were pioneers in this type of genetic testing, and the Journal Sentinel covered the story originally and has continued to do follow-up pieces. A book One in a Billion: The Story of Nic Volker and the Dawn of the Genomic Age is being released this week about that first child whose exome was sequenced and the doors it's opened for others like Teddy.

I never thought my child would be on the front page of the largest newspaper in our state, but I'm so excited that his story is being shared with others. 




Wednesday, April 6, 2016

California Vacation 2016

We survived (and enjoyed) another vacation with two young children!

This was the first time in nearly 10 years that we didn't spend a good portion of our nights in a tent. When we road trip with the boys, we drag along all our camping stuff and do occasional nights in hotels to break up drives, do laundry and catch a swimming pool. Since we were flying to Las Vegas to start our adventures, we decided it wasn't worth the hassle to haul all our camping gear for only a few nights of use.

The worst travel of our trip was the first day with Teddy tired and crabby about being contained for most of the flight when there were obviously all these cool people on the plane that he'd like to hop around to meet. We followed that flight up immediately with a couple hour drive to Joshua Tree National Park. Teddy was done riding after about 40 minutes, which made the remainder of the drive miserable. Teddy got so worked up that for the first time ever he vomited because he was so upset. On the bright side, that set the bar pretty low for keeping the rental car clean for the rest of the trip since he had christened the brand new, fresh-out-of-the-bag carseat.

Dave spent the first week pretty lethargic and miserable. It's a bit more challenging to find the effort to haul 35 pounds of child on a hike when you only have an appetite to eat dinner each day. Despite that, we still managed to have a good time exploring Joshua Tree. Joshua Tree is the 40th national park that Dave and I have explored together since we got married in 2006, so we had AJ capture us by the sign.

40 national parks (not including monuments and such) in less than 10 years.

From there, we explored Channel Islands National Park. We took a boat ride to Anacapa Island and spent the day exploring the beautiful vistas, looking for sea lions and even spotting a whale. The boys enjoyed splashing in the ocean.

The views from Anacapa are stunning!
The day before we went to the island, Teddy spent probably close to an hour walking while holding our hands because he loved the water! He kept leading whoever had his hands back into the ocean to splash, play and laugh.

This boy loves the water!
Fortunately Dave started feeling better mid-trip, which made our next stop in Yosemite even more enjoyable. Both boys have been to Yosemite two years ago just before Teddy turned one when we explored most of California's national parks. It's one of our favorite national parks, so we were excited to make a return visit and spend Easter in God's country. We avoided the crowds for the day by going to Hetch Hetchy, which is a much less visited part of the park. The hike across the dam, through the tunnel and up to this waterfall was probably AJ's favorite hike of the trip, and Teddy couldn't get enough of the splashing into the waterfall.

What a great way to spend Easter, hiking in this gorgeous country.
From there, we headed to Death Valley. We were a bit disappointed that Scotty's Castle, is a beautiful castle-like home, was closed because of damage from a flood last fall. We were hoping it might be open by the time we got there, but it's probably going to be years before it's open again. Death Valley was the place that far exceeded our expectations. We got to play in sand dunes, which both boys loved. We hiked into twisty slot canyons that had AJ running through them like a maze and Teddy giggling most of the way. We saw amazing views, enjoyed slightly cooler temps (like 70s and 80s instead of 90s, which is a benefit when schlepping kids on your back).

I dumped about 1/2 cup of sand out of his shorts at his next diaper change.

And, there was a pool at Death Valley, filled with warm spring-fed water, which meant 2 days swimming in a true desert oasis.

Best dollar investment of the trip was this floatie ring.
Our last park of the trip was Zion, which was another return visit for Dave and I. It was new for the boys, though, so AJ got his 4th junior ranger badge of the trip. Zion is one of the prettiest places on earth, in my humble opinion. We spent a couple days hiking and taking in the views.

We really love our children to haul them up these switchbacks!

And then yesterday we caught a 5:30 a.m. shuttle to the airport to fly back to Milwaukee. We dropped 50 degrees in temperature in 24 hours. We managed to vote and get 3 loads of laundry done last night before collapsing into our beds with AJ playing away still. (He's 2 time zones behind, so he he had lots of energy left to play.)  Today is back to work, which is a break for me from this wonderful vacation.