Saturday, November 4, 2017


The little boys and I took a trip to Utah at the end of September. It was General Conference weekend, though I didn't realize that when we planned the trip. I went there for a Spina Bifida Education Day in Salt Lake, and to visit family, of course.

Day 1: This was a very highly anticipated airplane ride. My goal was to mentally prep Evan with all the details so his anxiety would be eased enough that I could focus on keeping Seth happy and entertained. Dada dropped us off before going to work, so we had lots of time to watch airplanes while we waited for our own flight. I think it helped Evan to see planes taking off so that he knew what was coming when it was time for us to take off. I expected Seth to want to get off my lap and run down the aisle of the plane, but he actually seemed a little nervous which worked in my favor because he did not want to leave my lap for a while.  Dum dums, drinks, iPad, coloring books, and snacks were the keys to our success. (Mostly the snacks)


Grandma picked us up at the airport and took us to visit Grandpa at work at the Wells Fargo building in Salt Lake. Then first things first after arriving in Utah: TEMPLES!! The Provo City Center and Provo temples are new ones for Evan's temple picture wall in his room.

About 2 seconds after this picture, Seth came running towards these stairs and tripped, smacking his nose on the corner of the concrete step and getting a bloody nose. Blood on the temple grounds. Blood on our clothes.

While in Provo, I told Evan lots of stories of "Mama and Dada used to come here a lot before you were born." "This is the house we lived in when you were born." "This is where Mama and Dada went to school." and stuff like that. Evan loved that we went out for ice cream at the BYU creamery before dinner! At night Grandpa launched glowing spinning rocket helicopter things.

On Thursday, Great-grandma Garrett took us to the dinosaur museum and farm country at Thanksgiving Point. Evan was sure to explain to people that there were NOT dinosaurs at the museum--just dinosaur BONES. His favorite thing in the whole museum was the star room.


At farm country we went on a tractor hay ride and got scared by a mooing cow. Evan was super brave and surprised me by being willing to ride the pony by himself. Seth surprised me by not even wanting to get near the pony. 

After we came home, Evan and I made bead necklaces while Seth slept. When Grandma came home from the temple and Grandpa came home from work, Nate and Caitlyn came over and we all went bowling. Then we met Uncle Austin at Macey's for ice cream cones. It reminded me of when Isaiah and I would walk to Macey's in Provo and share a giant ice cream with each other and Evan, who was only about 6 months old at the time.

On Friday we were again spoiled as Great-grandma Garrett took us to the beautiful Thanksgiving Point Gardens and the Curiosity Museum. Evan pushed Seth through a lot of the gardens, including up some big hills. I loved the waterfalls and the statues of Christ. Evan and Seth loved feeding the fish at the koi pond. We didn't last too long at the Curiosity Museum since the boys were getting tired, but they still managed to get in some good water play, block building, and music making. Evan really loved the art room where there was a spinning plate with colorful sand on it.

At night we went to Great-grandma's for spaghetti dinner (Evan's choice) and the BYU football game. Grandpa pushed Evan so high on the swing. Seth preferred small pushes.

Saturday was the Spina Bifida Education Day at Primary Children's Medical Center in Salt Lake. There were speakers and break-out sessions as well as some time to mingle. Some people there had spina bifida and some people were parents or spouses of people with spina bifida. I was fascinated to meet and talk to a mom who has two children the same ages as my kids. She has spina bifida herself and it was incredible to learn how she manages life and kids while not being able to walk long distances or carry her baby. I loved hearing the adult perspectives of life with spina bifida.

Saturday and Sunday were also General Conference. The boys stayed at home with the grandparents on Saturday and we all stayed home Sunday to watch it. Sunday night was the semi-annual Packard post-conference dinner at Great-grandma Packard's house. At our family get-togethers in California there are just two other cousins. Here, there were TONS of cousins! Evan only lasted 5 seconds in the room with all of them. He said it was too loud and opted to go outside with Seth and have a screaming war instead. 

On Monday we had a Garrett family night with many more cousins. I'm a little sad my boys don't get to experience more of that. Big family get-togethers were such a big part of my childhood.

Tuesday was final indoctrination of the BYU obsession by Grandma and Grandpa. Earlier in the week we had visited the Cosmo statue, the BYU football stadium, and the BYU creamery. We also had to point out the Y on the mountain every time we saw it. Then there was the BYU football game and the BYU quilt on Grandma's couch. Not to mention the BYU sunglasses for both boys. Now they were ready to actually visit B-Y-U. There was another Cosmo statue. There were "Y"s everywhere. Evan got a BYU basketball t-shirt and even a BYU fidget spinner for his birthday. Neither boy could tell you a thing about BYU prior to our trip, but now both boys know that BYU is the BEST, and Seth will quickly point out any "Y" logo on our clothes.

This is where Dada used to work
After BYU we drove up Provo canyon to Bridal Veil Falls. It was freezing. We took pictures real fast and left. But the view from inside the car was perfect. There's not much better than Utah in the fall.

Nate had taken the day off work to be with us. He and Caitlyn came back to Grandma and Grandpa's and we played games. We went to Hee Haw's at night. Everything was perfect for my kiddos. I loved watching Evan be terrified of the goats and Caitlyn nearly go into labor on the hay ride. Seth was scared the first few times on the big slide, but by the end of the night both boys were going down on their own. Evan got his 2nd pony ride of the week.

Caitlyn, Nate, Seth, Evan, Grandpa, Mama

Wednesday was a more chill day--I got together with some of my besties from junior high/high school and their kids. Thursday morning we completed my Utah bucket list by going out to Kneader's for french toast. 

Then Caitlyn drove us to the airport so we could finally go home to Dada! What a week!

Tuesday, October 24, 2017

Spina Bifida Clinic 2017


Spina bifida clinic #.... (who knows?) is in the books! Probably about 8 or 9?

As I watched and analyzed Seth over the past few weeks, I really realized there was no way on earth I could contain him in a small hospital room during spina bifida clinic for 3+ hours, without a nap, without him breaking something or making me want to pull my hair out. And I definitely wouldn't be able to converse with a doctor, let alone 8 doctors, about Evan's medical needs while also controlling the bundle of energy that is Seth. And it just didn't work out with Isaiah's work schedule to have him with us this time.

SO... an angel friend of mine stepped in and offered to keep Seth for the day. It was an AMAZING service.

Evan was anxious about his appointments. For as many times as he's been to clinic, it's been a long year since his last visit and he didn't seem to remember it. I prepped him as well as I could about what to expect, but the second he sat down on the ultrasound table for his first appointment, he broke down crying. I'm gonna call that PTSD. Regardless of what he remembers, he's been through a lot of medical trauma. I empathize with his hospital anxiety. He turned and held onto me, and eventually calmed down enough to complete the ultrasound and chat the ear off the ultrasound tech.

Post-ultrasound, feeling more brave

UCSF cafeteria between appointments
I had reassured Evan many, many times that nothing at clinic would hurt and he would not get any shots. When we went into clinic the nurse was taking his height and weight measurements and asked if Evan wanted to get his flu shot today. Evan adamantly affirmed he would NOT be getting any shots today. Then the nurse went to pull out a thermometer and Evan lost it again. I tried telling him it was not a shot, it would not hurt, and it would not make a loud noise. But he never did let the nurse take his temperature.

Since we didn't have Seth in the room as a distraction, Evan was really the focus of the doctors' attention. Since he's a little older, they were able to talk to him directly about their area of specialty. Along with productive discussions, Evan was such a storyteller! (Some true, some a little exaggerated) We had encounters with Batman, people bigger than the whole hospital, and fire-breathing dragons. We also discussed...

Dietitian: Good! (Eat more vegetables)
Social Work: Good!
School Teacher: Good!
Urology: None of your business! Ok, Evan was good there, too.
Neurosurgery: The neurosurgeon actually taught me something--he pushed on Evan's shunt (which I always thought they were just feeling the size of the bump) and said if it doesn't push down then it's clogged at the bottom. If it doesn't pop back up then it's clogged at the top. Evan's shunt is good!
Rehab: Wow, I don't remember him having such good ankle strength! Maybe we can consider a smaller type of brace. Why don't you talk to the PT and see what she thinks?
PT: He's tight here and here so work on these stretches. He does look stronger and a different brace might be good.

Orthopedic Surgery: Hmm...there's some tibial torsion and some turn in at the foot and have you had a hip x-ray recently? Let's check that they're in place since they look relaxed and are turning in his legs. Oh, and do you want to do surgery?

Um...what? Okay!

Osteotomy: So you know that Evan's legs and feet aren't straight. At birth this was called club foot. As he has gone through bracing and therapy its become more clear that it's not exactly his feet that turn in, but his tibia (lower leg bone). He has this turn in from the knee (tibial torsion) as well as hips that have a tendency to turn in--a double whammy, as the surgeon put it. When Evan wears his AFOs, it adds weight to his feet and makes his legs turn in even worse. The twister cables he wears help straighten his leg positioning. However, they are not like braces for your teeth which permanently change the position of his bones. His bones are already torqued and the cables are only a band-aid.

Osteotomy is a surgery where they slice the tibia at the knee and rotate it to be straight. It's 6-8 weeks of bilateral casts up to the thigh, full-time wheelchair. Then walking boots for some number of weeks, and then weeks/months? of recovery--relearning to walk with straight legs.

Crummy. BUT...his legs will be straight! He will not need twister cables for life. His bracing will be more minimal. His walking/running potential will be greater.

We still have some research to do on the risks/rewards to make sure this is the best thing for Evan, but I think sometime early next year we'll be doing it! We previously thought he had to be 7-8 for the surgery so it's a bit of a surprise for us, but we've pretty much known this is what his future holds, and I'm excited for him! (Read: TERRIFIED!)

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.