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!!

video


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..."    Um...watch 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

Yosemite!

 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.

Thursday, June 29, 2017

St. George June 2017

My siblings and parents had a family reunion that piggy-backed on an extended Garrett family reunion in Santa Clara (St. George), Utah. We rented several vacation homes on a street and the Lance Garrett family filled an entire home ourselves. All my siblings were together for the first time since Austin left on his mission, and we now have 7 kids + 1 on the way.


The extended Garrett family (minus about 8)
My Garrett cousins + spouses + children
We took the drive to Utah nice and slow, stopping at temples, fast food play places, a hotel in Barstow, and the Stratosphere in Vegas. Evan has a collection of pictures of him in front of different temples. We got to add 3 new ones this trip: Fresno, Las Vegas, and St. George.


Fresno LDS Temple
Las Vegas LDS Temple
It was something like 110 degrees at each temple stop. In Vegas, Seth was walking around with a red face and his tongue hanging out. My tongue is out in this picture because our family photographer insists on crazy faces whenever he's behind the lens.



Our stop in Vegas also included the boys dropping me off at the Stratosphere to ride one of the roller coasters on top. I loved it. Bucket list item = Check!


Sunday: Father's Day
Church in St. George, hanging around the house, decorating fruit pizzas

Monday-Wednesday: Pool time (waterslide included), Kan Jam, Spikeball, Hot Wheels, temple trips with and without the kids, shopping at D.I. (a novelty for the East coasters), Nate's b-day dinner at Winger's, hiking Dixie rock, lots of grocery shopping, games after the kids went to bed--Two Rooms and a Boom, Loaded Questions, One Night Werewolf, Killer Bunnies--, roasting marshmallows, meeting new cousins, and lots of talking. I frequently caught myself thinking, "My family is so cool." "My brothers are awesome." "I really like being with these people."













The extended family came Wednesday evening. On Thursday we had a hike through the red rocks, some cousin connection time (all the 0-6 year olds in one house!), and Newsies at the Tuacahn at night. I loved the show. Or was it that I loved leaving the kids with a babysitter?

Friday included family picture time, afternoon splash pad, and an evening of pizza and games at a nearby church. Naturally, we sang songs like Little Brother Vegetable and Families can be Together Forever. We also told family history stories and played games that made us look silly. I heard the comment, "Our family is so strange," which I both agree with and love. 

Evan ran circles around the gym, dribbling the basketball, all night long. Several aunts mentioned to me how impressed they were his physical improvements. This is how they remembered him from the last Garrett family reunion 3 years ago:


This reunion he went the entire time without any assistive devices, and he even did most of the hiking on his own. He is impressive, for sure. Don't you miss the little gold walker just a little, though? It was so cute!!

Wednesday, June 28, 2017

June 28, 2017

Prior to being a mom, a day like today would have done me over.

1. For the first time in forever, I ironed a shirt this morning...on the floor. (I'm way too lazy to pull out the ironing board.) I unplugged the iron (still on the floor) and told my 1-year old not to touch it. Overestimating my child's self-control and obedience levels, I continued to get ready and forgot about the iron. He grabbed it and burned his teeny little baby hand. He cried for a really long time as I tried to persuade him that holding an ice pack is helpful even though I know it still really hurts. I eventually put on some ointment and wrapped his sweet hand in gauze. Most of the day he was a trooper, but occasionally he'd look at the wrap and whine.

2. We had some friends over and all the boys were jumping on the trampoline. I was sitting on the bench just beside the trampoline. Suddenly I saw Evan's body fly onto the bench next to me. His wide eyes matched the horror of someone quickly pulled underwater. I reached out and grabbed him just in time to prevent his head from smacking the cement ground. He scraped his back as he fell onto the bench but he was mostly crying out of panic as I held him, both of our hearts racing.

3. During all the falling out of the trampoline hullabaloo, I missed the knock on the door that was my new phone being delivered. (My current phone is all but broken.) Since I wasn't there to sign for the package, they didn't leave the phone. They'll try to deliver it again tomorrow.

4. After our friends left, Evan had a pediatrician appointment...during which he failed the eye test. Add optometrist to our list of doctors. Oh, and I may have neglected to tell him the appointment would include a finger prick, TB test, and 3 immunizations. (5 pokes total and many more tears) Thank goodness the donut store was just a few doors down as a consolation prize.

5. During the check-up I received a voicemail. Jennifer from such and such child development center...she had some questions for me about the developmental questionnaire I filled out for Seth a few weeks ago. I called her back when we got home. According to the answers I gave her, Seth wasn't passing the autism/asperger's screening. I'm no child specialist, but personally I thought the questions were dumb and non-indicative.
Her: Do you want a referral to have a further consultation?
Me: No, thank you.

Somehow I ended today with peace and positivity. Being a mom has made me strong.

Tuesday, May 2, 2017

Physical Abilities

Evan and Seth are pretty much equals in the physical abilities department.

Evan is 4 1/2.
Seth is 17 months.

They step up and down curbs with a similar amount of teetering in their balance.
They both have scraped knees from constantly falling.
Each of them wins tug-of-wars over toys 50% of the time, as well as races for a coveted item.
Their feet even make the same slapping noise when they run, probably related to their matching pigeon-toed-ness.

Evan climbs ladders on the playground with anxiety and wants me to help him even though I know he has the ability to do it on his own. Seth, on the other hand, will eagerly climb up behind Evan even though his teeny legs can't even reach the next step, giving me regular heart attacks.

Comparisons to the little brother aside, Evan is incredible. He is defying a lot of spina bifida odds with his mobility level and bowel/bladder control and I am so grateful for everything he CAN do. He throws and kicks (left-handed and left-footed) things all day long. His new favorite trick is drop-kicking. When he's not playing with balls or paper airplanes, he jumps and does somersaults on the trampoline. And he is potty trained, people! No cathing, no enemas, no medication, no nothing. That pretty much doesn't happen with people at his level of spina bifida.

Evan sorta graduated therapy today. By "sorta" I mean, his therapists evaluated him as able to function independently or his age, but I'm too afraid of not having him seen regularly by a therapist to completely stop therapy, so he will still get check-ups every other month. He has progressed a ton in the last 6 months and year. Sometimes I don't notice his progress, but I've had multiple people comment to me lately about how well he is walking, or how straight his feet seem, or how awesome he is doing on the playground... I step back and realize, "Yeah, he is doing great!"

We recently signed him up for soccer, and he loves it. Last week at practice, the coach said, "Let's see who is the fastest." My heart sank and I was so nervous for Evan. The kids were told to run to the goal at the opposite end of the field and then run back. Check out my little guy--he made me so proud! No, I wasn't crying during the middle of soccer practice...

video





video







Super Evan watching Super Why
This is what happens when you lean too far over the edge of bathtub when Evan is bathing.


Evan earned a "train" (light rail) ride for staying "fresh" (potty trained) for 5 days!