Thursday, December 1, 2016

Seth

I love Seth. My second child who often takes a back seat to the big brother. The child who gets less attention because he requires less attention.

Evan was easy to love. I knew his name months before he was born. I prayed for him before he was born. I had a million appointments and ultrasounds and then open fetal surgery for him before he was born. He and I have a super close relationship (too close sometimes) and lots of love born out of lots of shared experiences and struggles.

Then there's Seth. Ha ha! I didn't know what his name was going to be until after he was born. I prayed for him before he was born, but I'm not exactly sure what for. He was always fine. I remember that for the first few weeks, every time I said Seth's name I had to really think about it. Is that really his name? Then there was the constant crying. The hours it took to get him to sleep. The challenges and restrictions with breastfeeding. More crying, especially in the car. Seth was so hard as a newborn. People would ask how he was, and there were few nice things I could honestly say about him.

I always said I loved Seth. All moms love their children, right? But I really didn't feel it. I didn't have the excitement when I saw him, the joy from his achievements. It's been interesting as he hits milestones--I obviously appreciate each new skill he learns, but just not in the way it was when Evan hit milestones. Elatement. Relief. Pride. I wasn't feeling that with Seth. I didn't love him as much. I wondered if it was like that for everyone with subsequent children. Are they always loved less than the first?

I can't say what it is that's changed recently because I honestly don't know. But I have a newfound fascination with my Seffy boy, as he's known around here. He is SMART! And funny. Maybe it's the fact that he can interact with us now. He responds to things I say and he can copy things I do. He plays with Evan. They make each other laugh. In fact, I'm able to blog while they're both awake right now because they're entertaining each other in Seth's room.

Seth loves music. The piano, ukulele, maracas, toy guitar, cat piano, any toy that plays songs...he knows all the buttons to push and he always pushes the button right after the song stops so the music never ends. He dances with his hands and shakes his head. He sits with one leg in front and one leg behind. Evan always asks, "Can I sit like Seth?" and tries to copy him. Seth loves being on the move, but he doesn't like crawling very far. So he comes to me and whines until I give him my finger and walk with him until he finds something new to do. He is really good at playing with toys independently.

His nickname is trouble maker and Evan often says, "Uh oh! Here comes Trouble!" He always goes for the bathroom (specifically the toilet) and the cupboard with the cleaners. He loves cords and electronics. He always finds Siri when he gets a hold of my phone. He throws his food off the tray when he's done eating. He spits out his drink when using a straw. He gravitates toward dirt and water. He has shocked me by being surprisingly humane with our Christmas tree.

When Evan is in school, our schedule works out so that I get about 3 hours of one-on-one time with Seth while Evan is gone. Then Seth goes down for a nap as Evan comes home and I have 2-3 hours solo with Evan. I cherish one-on-one time. I love being able to focus on each boy and give them my full attention. I love learning their individual personalities. When they're together there tends to be a lot of disciplining, but when they're alone I love being able to love on them.

It took us a year, but I really do love Seth now. Happy first birthday Seffy!

Thursday, October 27, 2016

Here's Why

Why should you support Evan at the Spina Bifida Walk-n-Roll in Northern California?

1. He can run.


2. He can ride his scooter.


3. He can bowl with a pumpkin.


4. He can dance.


5. He can drive a boat.



6. And last but not least...he has an awesome brother who can do cool tricks too!


Wednesday, October 12, 2016

Fetal Surgery Info

What is Spina Bifida? What did the in utero surgery actually do? And if you didn't have that what would have happened when he was born?

I feel like Evan is on the more functional side of the spectrum. Do you believe that was because of the in-utero surgery you had?

Evan's form of Spina Bifida, myelomeningocele, is the most severe form of Spina Bifida. It means that there was an opening in his spine and back, leaving his spinal cord protruding and exposed to amniotic fluid and being touched—potential causes of nerve damage.


I remember the doctor showing us on the ultrasound how the upper vertebrae looked like this: ^^^^^. At a certain point they inverted to this: vvvvv which is where the opening in Evan's back started. The point where the hole starts is what we call his lesion level, which, for Evan, is L3/L4. How well a person with Spina Bifida can function is typically related to lesion level because nerves from that point down are affected. Lower levels are good. Less nerves affected. L3/L4 is moderate, I'd say.



On diagnosis day, the doctor showed us a chart like these and told us that Evan would probably need help walking, and was on the edge of needing a wheelchair or not. Then he gave us 3 options:

1. Post natal surgery: The most common option. When my child is born he would be taken off pretty quickly to have surgery to close the hole in his back. 

2. Fetal surgery: Newer, more risky option. Open me up and close the hole in baby's back between 21 and 26 weeks of pregnancy, then close me up and try to keep me pregnant.

3. Terminate the pregnancy (out of the question for us)

The obvious and plentiful risks associated with fetal surgery make it not the right choice for every family. There were a few predicted benefits, however, that drew us in. In closing the hole earlier you cover the spinal cord and protect the nerves earlier. That's obviously a good thing. From the study that was done to test the effectiveness of fetal surgery, it showed that people who had fetal surgery performed, on average, two levels lower than their lesion. So Evan could potentially function more like L5/S1. And I think that's what happened. Referring to the charts above, rather than needing a wheelchair and long braces, Evan has short braces and cables for his abnormal feet positioning. He's definitely functioning on the less severe side of the spectrum, and it makes sense to me that fetal surgery made the difference.

Wednesday, October 5, 2016

Perspectives on Motherhood

There are some motherhood "rites of passage" that I've wanted since before I was a mom. There were also some things I didn't realize I wanted until I couldn't have them. When we decided to pursue fetal surgery, my opportunities for some true motherhood experiences went out the window. For example, I'll never know 40 weeks of pregnancy. I'll never know labor. Contractions? What are those? I know that most people who have experienced pregnancy and labor would tell me to put these things in the category of "Stupidest things I ever wanted." But since my perspective is a 6-week premature baby, a 3-week nicu stay, 4 months of portable oxygen, 2 c-sections, and a limited number of children I can birth...sometimes I can't help but wish I had those stupid things in my life.

The grass is always greener, I guess.

Being independent, pulling bowls out of kitchen cupboards, dumping toy boxes, breastfeeding, messy self-feeding... When Evan didn't do these things I tried to convince myself that they were stupid things to want. I've tried to be grateful for everything Evan does. But really, I laugh when Seth opens the cupboards and pulls out the pot lids and throws them around the kitchen floor. I take pictures as he rips all the books off the shelf less than ten seconds after I picked them all up. I'm proud when he ravages through the toy box to find something to play with. These are legit motherhood experiences that I hadn't had before, and I'm finding joy in the many things Seth is able to do.

Someone  just created a graphic for Spina Bifida awareness month (October) that says, "Our house is Spina Bifida strong." Although many of the experiences I've had with Seth have been easier and maybe more enjoyable than the experiences of raising a child with Spina Bifida, our family would not have the strength, bond, love, unity, and understanding that we have, without Evan. He is such a blessing! He makes me laugh, he makes me think, he questions me, he questions me again, he drives me crazy, and then he softens my heart and teaches me about patience, love, innocence, joy, priorities. At times I wish I could trade Evan's experiences for easier ones, but I wouldn't ever give up who we've been able to become through the harder experiences. Maybe Spina Bifida is the stupidest thing I've ever wanted, but I know we wouldn't be the same without it, so today I'm grateful.

In one month we are participating in our 2nd Walk-n-Roll for Spina Bifida! Last time Evan had his nifty silver walker. This time he'll be walking independently, and probably even running part of the course. All of the funds raised will go to the Spina Bifida Association, including money for our local chapter to host socials where Evan gets to meet other people who have Spina Bifida, shunts, braces. That's starting to mean something to him, though he still doesn't quite get why Seth doesn't have a shunt...

If you want, you can donate to this great group. And if you're local and want to join us on November 5th in Walnut Creek, register and make sure to choose Evan's team which he appropriately named, "Go Spina Bifida!"

Here's the link: Walk-n-Roll for Spina Bifida

Tuesday, August 16, 2016

Staycation

Nate, Caitlyn, and Austin came to visit us!

Uncle Austin came home from his mission in Mexico last month. We would've loved to be there to welcome him home, but having him come to us was WAY easier than packing up the kids and going to Utah. We collaborated to create a tour of Northern California for all of us. Prepare to be amazed at the amount of family pictures we got. Thanks, Austin.

We shortened their Day 1 drive by meeting them at Lake Tahoe and staying at Isaiah's friend's house for the night. On Wednesday we hiked the Rubicon trail which provides a beautiful view of the lake while hiking. Highlights of the hike included interesting boulders, an old lighthouse, and two love-birds who held hands in the back most of the time. I had Seth in a baby carrier and Isaiah (with Austin's help at some points) pushed Evan in the stroller. The ranger at the head of the trail told us flat out that we would not be able to take the stroller on the trial. We enjoyed proving her wrong.










In the afternoon we spent some time at the beach. It was cold water. I stayed on the beach with the children. Between forcing Evan to sit and play with his bucket and shovel and *gasp!* TOUCH THE SAND!, and holding Seth back from grabbing and eating all the sand, I managed to catch glimpses of Isaiah and Austin jumping off the dock into the water and Nate and Caitlyn swimming around. Later on, while throwing the aerobie with Isaiah and Austin in the grass, Evan got stung by a yellow jacket right above his lip. He and Seth both crashed on the way home. I love sleeping kids in the car.




On Thursday, the out-of-towners ventured out on their own to San Francisco while Evan had his first day of preschool (year 2 in the 3-year old class). They did the touristy things that I've never done like Fisherman's Wharf, Pier 39, Ghiradelli Square, China Town, and the Exploratorium.

Friday was our Sacramento day. We sent the tourists to the Sacramento temple to do a morning session. Evan, Seth, and I would join them for lunch on the temple grounds afterwards, followed by a trip to Lake Natoma to kayak and stand-up paddle board. Those plans would have been awesome if the temple was actually open...

The boys and I sped on over once we were reminded of the temple closure (I'm still kicking myself for not remembering), and the remainder of the plans went smoothly. We played on the beach and watched Nate, Caitlyn, and Austin rotate on the kayak and stand-up paddle board. They were all really talented! Once again, Seth loved eating the sand and rocks.



Friday night was the first time we got around to our classic family game-playing and treat-eating. Boggle, Balderdash, ice cream. Most nights we were tired, got home late, or chose to watch the Olympics.

Saturday was San Francisco Part II, complete with Golden Gate Bridge pictures, fog, Point Bonita lighthouse hike, ocean/beach time, and Muir Woods, all prefaced with a pit stop at the Jelly Belly Factory.

Photo cred: Evan





I dare you to try taking away this kid's aerobie







Can you see why I get these two mixed up all the time?
Look at that adorable baby-wearing daddy



Evan's view from the stroller

Thursday, July 21, 2016

Annoying

Today Evan told me, "Don't say 'no' cuz that's annoying a little bit when you tell me 'no.'"

Hmmm...I wonder where he's learned to talk like that.

Maybe it's been summer break a little too long.

#1 Annoyance: Potty training
It's draining.

Other annoyances in no particular order:

  • Biting teeth together
  • "Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom"
  • Spitting
  • Pig noises
  • Disobedience
  • "WHY?"
  • "I'm SOOOOO hungry."
  • "But I don't WANT to."
  • Taking every toy brother is playing with because suddenly, now that brother has it, it is the coolest toy in the whole house and there are no other toys that are fun to play with
  • Throwing everything
Sometimes everything my son does annoys me. Then Isaiah says something about how Evan and I are just like each other. I don't know what that means.







video

video

Tuesday, June 14, 2016

May 2016

Cosumnes River Preserve 




Seth: Smiles, New Toys, Solids


video



video

That eyebrow, though...
 Family Home Evening River Walk


Big Truck Day (Wannabe-Garbage-Man-Heaven)



video

Memorial Day


video

video


video
Seth's first swimming adventure, part 1

video
Swimming adventure, part 2

Isaiah's patriotic pinterest eagles
Seth letting somebody besides mom and dad hold him for more than 2 minutes