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...

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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!

Friday, April 21, 2017

Easter is my Favorite

I love Easter because it's the most important holiday. I love teaching Evan the Easter story and I made a special effort to do Easter/Christ-focused things leading up to Easter to make it extra special.

In the LDS church's Friend magazine, they had a two-page pullout with "Names of Jesus." Each day on the week before Easter, Evan and I would read a scripture and find the name of Jesus mentioned in it. Then we talked about how Jesus was the "Mediator," or "Creator," or "Messiah." I even integrated a little phonics and had him tell me the letters that went with the sounds as I wrote out the word on the paper. One day he chose to write the word himself. We hung up our poster and talked about it frequently.

For Family Home Evening, I made Easter scripture eggs. I remember having these eggs growing up so it was a nostalgic activity for me. I didn't have to buy anything to put these together--just used stuff I already had. Evan and I read through the scriptures a couple times during the week (when Seth was napping so he wouldn't destroy all the items inside). Having tangibles--particularly different textures and smells--bring the story more to life.

On Friday, Evan and I made "resurrection rolls." We talked about how Jesus went in the tomb, and I told him the marshmallow was like Jesus' body. We wrapped it up in the crescent roll and baked it. When we took them out of the oven, I broke open one of the rolls and Evan was shocked that "Jesus' body" wasn't there anymore! He was risen!

"He is risen" is the best phrase. Teaching kids about how Christ was nailed on the cross and how he died is tough. It makes them sad. But the whole point of Easter is that things didn't STAY sad. Jesus rose from the tomb. He is risen! We can be happy because of Jesus Christ, our Savior. He saved us from death! (And sin, but that one is still kinda hard to explain to a 4-year old.)

Last year I found this video that I adore that shares the Easter story in a way Evan can understand well. He and I watched the video several times during the week.


On Saturday we went to the Elk Grove Egg-stravaganza. They have vendors, food trucks, face painting, pony rides, corn pit, pictures with the Easter Bunny, crafts, and an Easter egg hunt. We did the egg hunt and then my boys spent an hour just playing in the corn pit. We're simple. And cheap.



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Later in the day we dyed hard-boiled eggs. In case you were curious about the Volcano Explosion egg-dying kit, don't buy it. It requires shaving crayons with a teeny sharpener and putting the shavings onto hot, fresh-out-of-boiling-water eggs. It's a cool look, but not worth the effort for me.

As far as Evan was concerned, Easter could have been done after Saturday. But Saturday night we put out our Sunday shoes by the fireplace for the Easter Bunny to fill (not sure who started this tradition, but I grew up doing it, so we keep doing it). And Sunday morning there were candy-filled plastic eggs hidden around the house for the boys to find. If we hadn't told Evan, he probably wouldn't have noticed them. He's such a bad finder. After he found a couple eggs, we had him leave the rest for Seth (no way I'd wake him up early on a Sunday to hunt for candy) and we had french toast, made with homemade bread, and orange juice for breakfast. The boys put on their matching purple ties and we made it through our church meetings with only small amounts of crying, intentional banging heads on the door, splashing in the drinking fountain, and roaming the halls.

After church Evan helped Seth find the remaining eggs. Seth napped while I finished cooking dinner. We hosted a classic ham and funeral potato dinner with Isaiah's family--at least those who got the memo that there would be a family Easter dinner at our house. Carrot cake for dessert. A second egg hunt with cousin Maya. Apples to apples with the whole family. It doesn't get much better than that.

Easter is the best.

Saturday, March 18, 2017

PICTURES!!

First, our laptop died. 
Then, I got called as Young Women's president.
Consequently, I made the big girl decision to (finally) get a smartphone.
Unfortunately, I couldn't figure out how to blog with pictures on my phone.
Finally, I gave up on blogging.
Recently, Isaiah got called as Bishop!
Consequently, we bought a new laptop.
Now, I can blog my pictures!!
Don't worry, I've been released as Young Women's president.

Here comes our last 6ish months in reverse order with minimal words as I attempt to catch up on the blog.








Evan got his 3rd tooth pulled. The roots were exposed through the gums from his original accident and the irritation finally got the best of us. 
Our furnace died for a couple days and we were grateful to live in a California winter and to have a fireplace.


Evan decided to have a seizure the day before our Christmas trip to Utah. A quick little ambulance ride, a few hours in the ER, no diagnosis, no further seizures.







Isaiah planted seed last fall, and we now have a beautiful, grassy backyard!






I passed a kidney stone.

Seth and Isaiah are twins.



Evan started 3-year old preschool, year 2 at a new school


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.