Saturday, October 14, 2017

May-August 2017 Phone Pics

 May 2017

Big Truck Day

 June 2017
Welcome to Earth, Baby Luke!

Sethy's poor burned hand from touching a hot iron
 July 2017
Happy 4th of July!
Fairytale Town in Sacramento

Summer splash pads

Medals from Miss Nikki--she's amazing!!

Soccer team party. Evan and the Waves had an awesome season. There may not have been a lot of goals scored but there were lots of wins in my book.

When I was on the ultrasound table and the doctor and genetic counselor came in to say that our baby had spina bifida, my very first thought was that Isaiah would not have an active, athletic son like himself to go play catch with at the park. As I watched my boys throwing and running I thought back on that day and how wrong I was. I made a video to remember my gratitude for Evan's abilities. 

Not sure why I documented this moment...perhaps because it's rare that we remember to brush our teeth?

August 2017

1st day of preschool...year 3. New school, new teacher, new friends.

Cousins came to visit from Utah. We visited Apple Hill and Coloma/Sutter's Mill with them. Yay for apple fritters and gold panning and making new lifelong friends.

This kid had me laughing out loud in the waiting room of Hanger, which is good because usually I want to pull my hair out. I still laugh every time I watch these videos. 

Post-bath bath

Evan loves to play "doctor", and Dada has convinced him that being a doctor means giving back rubs, foot rubs, and head rubs, as well as walking on your back. 

Sunday, September 17, 2017

Walk-N-Roll for SBA 2017

Evan said he would be the fastest, and gosh darn it, he did not want to stop running until he was the first one across that finish line, and he was!!

This was Evan's 3rd walk-n-roll. As a little reminder of how far he's come...

1st walk--Dec 2014 (2 years, 2 months)
He took over half an hour to complete the walk

Look at those feet!! 

2nd walk--Nov 2016 (4 years 1 month)
(Started the walk as the 2nd team, ended as the 2nd to last team--but walked/scootered the whole way on his own!)

3rd walk--Sept 2017 (4 years 11 months)
First place, RAN most of the way!!


We started 2nd to last this year, so there were a lot of people in front of us. (Mind you, this isn't a race. It's an all-inclusive, family-friendly walk.) Once I told Evan the walk started, he took off running. I was holding Seth and the "Go Evan Go!" poster so my running was a bit more clumsy than Evan's. He quickly caught up to the team in front of us, and I thought he would stop and take his place walking behind them. Nope! He just ran right through them! I had to excuse ourselves as I weaved my way through team after team. "Sorry, but my son is up there and I need to catch him! He won't stop!"  When he got tired he'd say, "Show me the poster!" Once I showed it to him and cheered him on, he was able to keep running. He's a rock star. It wasn't about being first. It was about seeing my boy determined to run. Seriously, so cool.

These socks were the key to his speed.

Thank you to family and friends who supported us through donations and wearing crazy socks on Saturday. I loved that people were willing to wear some ridiculous socks for Evan. We are so grateful that people care about spina bifida! In fact, next month is spina bifida awareness month and theme is "Care about Spina Bifida." I'll be sure to bombard you with reasons why you should care if you don't yet.

Part of the walk-n-roll is a resource fair where healthcare vendors and non-profit organizations have booths to advertise their services/what they offer to people with spina bifida. One of the groups this year was the Capital City Adaptive Athletes Foundation. Among other things they are really good at wheelchair basketball. Their group includes a guy, Joe, who played professional wheelchair basketball in Europe and played in the Paralympics for Team USA. He has a prosthetic leg. With Evan's obsession with basketball, I knew he needed to talk to these guys. They watched Evan dribble their ball and played pass with him. Then they tried to convince him to get in a little wheelchair to try it out. He was extremely resistant. Joe talked to Evan about how he didn't want to get in the chair at first either. But then he realized how fast he could go in it, and how he could do spins and tricks, and then he liked it. That eased Evan's nerves a little and he eventually agreed to just push the chair from behind. Maya came up and decided she would get in and try it. After that, Evan was ready to try it himself. He got in and started wheeling himself around the parking lot slowly. He was a little cautious, and the chair was a bit too big for him, but he was actually in a wheelchair for the first time. It seemed like an important moment to me.

The team members talked to me about how any lower limb disability qualifies you to play wheelchair basketball. And regardless of the level of disability, or the fact that he doesn't need a chair all the time, Evan could probably qualify for a grant to get a sport chair if he wanted to start playing. I'm definitely going to look into that for him.

Monday, August 28, 2017

D.C. for the SBA

I'm BACK!!

0 kids
1 Spina Bifida Association
2 cross-country flights
3 days of leadership training
18 new friends
Floods of memories.
Monuments. Memorials.
Fried chicken and donuts.

I am back in D.C.!!
(Okay, I was there a week ago. It's taken me a while to collect my thoughts)

I feel like I look like my dad in this picture...classic Garrett squint

Some people know that I am a member of the Northern CA chapter of the Spina Bifida Association. What many people don't know is what the Spina Bifida Association actually does. Truth be told, prior to my weekend leadership institute in DC I was one of those people. Here's some highlights of super important things that the SBA is doing right now:

Spina Bifida Problem: Expectant mom goes in for 20 week ultrasound and is told her baby has spina bifida and is given options. Option A: Terminate. Your baby will be a "water head" and have "poor quality of life." Option B: If you make the decision to keep your baby, they will be paralyzed and have brain damage.
What SBA is doing about this: SBA is working with the Michigan chapter to pass a bill in Michigan (and hopefully all states, eventually) that requires doctors to provide current, accurate information about spina bifida to newly-diagnosed parents.

Spina Bifida Problem: Kid with spina bifida goes to a well-visit with his pediatrician who asks ignorant questions about spina bifida and doesn't address pertinent issues like bowel/bladder continence or non-verbal learning disability. 
What SBA is doing about this: SBA brought together clinics and health professionals to update the Spina Bifida Health Care Guidelines which outline the key areas of clinical and psychosocial care needed for the spina bifida community. Due to come out next year, I will be able to print out take the guidelines for Evan, age 5, to his pediatrician to ensure that all areas of concern are being monitored and addressed by his primary care doctor. Doctor should also be able to access these guidelines via the Health Care Guidelines app.

Spina Bifida Problem: Johnny goes to ILoveSB Clinic where his doctors monitor his kidneys via ultrasounds every 6 months. Sally goes to SBisgreat Clinic where her doctors have cathed her from birth "because most people with SB need to be cathed eventually." Peter goes to SBrocks Clinic where the doctors prescribe medication to all children with spina bifida for both bladder and bowel continence. Urologic care for each of these children is determined by the doctors' preferences rather than by proven practices that best protect their kidneys and best promote continence. 
What SBA is doing about this: SBA helped create the very first urologic protocols for treatment of spina bifida that are currently being tested by five clinics. Once they are shown to be effective, they will be closer to requiring these protocols to be followed by all doctors nation-wide.

These things all matter and make a difference to me and my family. They matter for the health and increased life-expectancy of people with spina bifida. When you donate to SBA via the Walk-n-Roll or otherwise, you are furthering each of these projects in addition to continuing social gatherings for our local chapter and funding my attendance at important leadership institutes that teach me how to advocate for my child. Thank you!

Here's Evan's Walk-N-Roll page: Team Rock Your Socks!

Monday, August 7, 2017

My Kids

The other day at the park, I don't remember exactly what he did to annoy me, but I was testy and told Evan, "You're really pushing your limits. You need to show me you can play well at the playground or we're gonna go home." He walked off and grabbed his basketball and started dribbling towards me. Then he said, "You said I'm pushing my limits? I'm just pushing ONE limit. I'm pushing my ball limit."

After Evan said the prayer for lunch, he asked, "When I said the prayer, did you feel the spirit?" I said, "Yeah, I did." and smiled at him. He smiled back and said, "I did, too. The spirit was blowing so hard!"

Anytime Seth sees candy come out of the candy machine he squeals, "Oh!," like he's surprised, even though I'm pretty sure by now it's no surprise to him. Also, anytime we give Seth instructions, he says "Oh," like, "Oh, ok."

Evan's new obsession is dribbling his basketball. He can do it while sitting, while running, and back and forth with both hands. He throws the ball up in the air to himself and then dribbles back and forth on our back patio. It reminds me of my brother, Nate, who would play basketball with himself all the time.

Don't worry if you can't understand Seth. He comes with a personal translator, Evan. He'll let you know that "seezee" means cereal, "nuk" means drink, and "b ball" means basketball. He calls Evan "Evie," which I think is adorable.

Seth loves to put on shoes. His own shoes on his feet, other people's shoes on his feet, and other people's shoes on their feet. He's our little shoe helper, always bringing us our shoes when it's time to go out...or even when it's not time to go out, for that matter.

Evan always talks about numbers (time, ages, length), even though he has a very confused understanding of them right now.

"Can I just watch a show for 10 more hours?"
"Was I 3 when I was in your tummy?"
"I'm 18 feet tall."
"You were in the shower a long time--like 10-49 hours"
"I only watched shows for, like, 270 seconds."
"Will I be 5 tomorrow?"
"We went to that park last year [meaning yesterday]."

It's all very tricky.

Evan has a hard time playing independently. He hates it. He often refuses to do it.
Evan: What should I do now?
Me: Play.
Evan: When should I stop playing?
Me: Never.
Evan: But I don't want to never stop playing!

Seth's favorite foods: cottage cheese, cereal, pretzels, grapes, bananas, yogurt, bread, cookies, corn on the cob, candy he sneaks from the candy machine. Seth gets so happy anytime he's able to reach snacks in the pantry or fridge, and the proud smile on his face as he brings the food to me is just too cute for me to tell him no.

Evan's favorite shows: Anything PBS (Super Why, Cyberchase, Word World, Kratts Creatures) He's subtle about the way he asks for things he wants, i.e. "What is something I can do that has a button on the side and you turn it on, and it's black..." TV?   "Yeah! That's what I want to do!"

Both boys gravitate to the sound of the ice cream man, with the little guy repeating "i keem! i keem!" Both boys also notice every single "air pleen! air pleen!," no matter how high in the sky.

Seth's smile melts me. He snuggles my neck and sings songs with me before bed. He gives slobbery kisses on demand. He never responds to his own name.

Evan wakes up early and entertains himself or lays next to me in bed until I'm ready to get up. He loves family cuddles and getting back or leg rubs. He makes me laugh. And yell. I do best when I have solo time with Evan because he's better behaved when he gets the attention he craves.

These are my boys!

Monday, July 24, 2017


 At 19 months, Seth finally decided to start sleeping through the night. I took away his pacifier one night. He slept great. I took away his white noise the next night. Still slept great. After about a week, I took away his bottle. He's been a champ. That was a lot less painful than I had anticipated. Thank goodness!!

Sleeping through the night + no white noises needed = time to go camping!!

Why does every random stranger stink at taking pictures?!
Thank goodness for self-timing cameras and a husband who knows how to use the focus.
Despite living in Northern California his whole life, Isaiah had never been to Yosemite, and neither had I, so we finally went and checked that off our bucket list. We camped right near the entrance to Yosemite Park on Tuesday night, and woke up early Wednesday to drive into the valley to sight-see and hike. There was a deer in the meadow behind our tent. We made peach cobbler in our dutch oven. Evan got a new mummy bag so Seth could use Evan's Planes sleeping bag. Seth chose not to use the sleeping bag, but rather just use a blanket. Dada took up more than his share of the tent so Mama was squished and didn't sleep well. We were all up sometime around 5:30.

Our first stop was Glacier Point, an overlook of the Yosemite Valley. There was almost nobody up there when we first arrived, and the view with the sun rising was awesome. 

Half-dome on the right
Yosemite Falls on the left
People, learn to focus a camera on the PEOPLE!!
Our first "hike" (1000 ft walk with a slight incline) was to Bridle Veil Falls. It was a little cold and misty at the photo op spot. We enjoyed people watching. Lots of Asians and selfie sticks blocking your view. Truthfully, though, it wasn't as crowded as we have been told it can get. We were lucky we could go mid-week and use handicap parking. I definitely recommend each of those whenever you go to a National Park. (By the way, we just got an access pass for Evan which gives him--or the car he's in--free access to all National Parks. Booyah Spina Bifida!)

We went to the visitor's center, museum, shops, and had some lunch. Then we took the stroller on another "hike" (a solid 1/2 mile this time) to Lower Yosemite Falls. We knew we'd be a little limited this time with kids and a stroller, so all the while Isaiah was plotting what hikes he wants to do when we go back without the kids (Upper Yosemite Falls, Half Dome...). On the way down the trail we stopped and took our shoes off to wade in the river and throw sticks and mud. Evan and I also stacked rocks in the goblin valley.

The kids slept on the way home and we were back before dinner. Seth's first camping trip is in the books! I'm ready to do it again.