It's a Boy!

Okay, so we're a little disappointed the royal baby is a boy as Evan was hoping for a princess who could become his future Mrs. Hudson. I guess I'll just have to have a baby girl who I can raise up as a princess of my own. I've thought it would be cool (mostly for purposes of awareness) if the royal baby had spina bifida or some other special needs condition. It made me start thinking about famous people with spina bifida, or even celebrities who have children with spina bifida. I really haven't heard of that much. Today I researched it a little bit and found very few examples.

For me, the only interesting famous person I found with spina bifida is Roald Dahl. Frustrated by his long-time struggle with hydrocephalus, Dahl worked with medical experts to develop the Wade-Dahl-Till (WDT) valve to alleviate the condition. With the improvements in shunts this valve has become obsolete, but it's pretty cool to me that he was influential in this.

There are only a small handful of celebrities who have children with disabilities (at least from what I can find). I wonder why this is. Maybe because celebrities have fewer children? Maybe because these children are aborted? I think it'd be great to have a method of bringing widespread awareness of spina bifida--or any special needs condition--to the public such as having a celebrity who can advocate for their child and the condition.

Today I got a tour of a nearby city where there are actually grocery and shopping stores. It's only half an hour to anything you want--but it's also half an hour to anything you want. We better start saving up our pennies for some gas! We'll also have to learn the tricks of making shopping lists so we don't have to "go into town" too frequently each week.

Maya, helpful as ever

Cousins shopping at Costco

California Day 1

We sold/gave away all our furniture except my piano. We packed up all our possessions except those that needed to be purged. We had several people help us pack up the moving truck Thursday evening. We took off Friday morning. Evan was a rock star road trip companion with a total of about 15 minutes of sadness for the entire car ride. The car worked well except, as all good road trip stories start, there was an interesting grinding sound from Isaiah's car just 20 minutes into the trip. (Fortunately the resulting impromptu brake-repair stop only took an hour and a half and Evan enjoyed the McDonald's play place in the meantime.) We stayed at a hotel suite in Lovelock, Nevada. Evan fell asleep on a camping mat on the floor at 6 and slept until 6 the next morning. (Best. Baby. Ever.) We arrived in Esparto, CA around noon on Saturday morning. The local missionaries helped move the piano in.

We'll keep most of our things in the garage and only unpack the boxes we'll need in the near future. The unpacking still has a long way to go. I found my way to church by myself this morning since Isaiah and Grandma Hudson went early for choir practice. Isaiah starts work tomorrow. I'll be working remotely now with totally flexible hours. We're trying not to be a nuisance here. Maya loves Evan. Evan thinks Maya is pretty cool, too. I love telling Maya what to do like, "Get me Evan's toy," or "Give Evan his bottle." I like to think I'm helping out by entertaining her in this way.

In case you're dying to know, Esparto has a population of about 3,500 people. The roads are named Road 20, Road 23A, etc... Don't be deceived--they're not necessarily in numerical order like the streets in Utah. They're just random and empty and long and surrounded by fields on both sides and the speed is "enforced by aircraft". In other words, it's not enforced. But we're not altogether away from the "real world". I can still check the internet regularly for any word of Princess Kate's baby. Evan hopes it's a girl.

Waiting at McDonald's for the car to get repaired.

So close to independent sitting

Ugh

I just got a call from an RN with our insurance company (which is not even our insurance company anymore...more on that later). She was calling to let me know about the service they offer to answer any questions I might have. Right away I could tell she knew nothing about my child.
"So...is he doing ok? I see he was born a little premature."
I'm thinking, "Yeah...prematurity was the least of our concerns but thanks for asking."
Well it finally came up that Evan has spina bifida and she seriously asked me...get ready for this...

"Is he taking any medication for that or how are you treating it?"

WHAT?!?!

Is she seriously a registered nurse who thinks spina bifida can be treated?! Let alone treated with medication?!

Now I think I am fairly understanding of ignorant people--let's face it, I was totally ignorant before I found out about Evan--but a registered nurse who thinks she can answer my questions when she thinks spina bifida can treated with medicine? If only nerve damage and extra fluid in the brain was that easy to fix. Thank you Miss Nurse, but I won't be needing your services.

End rant.

Now, why are we switching insurance companies? Because we're switching jobs. Why are we switching jobs? Because Isaiah found one that is a good opportunity for our family. Where? California.

We're moving on July 19th.

Summer Vacation and Updates

Last week we took our first family vacation to visit the Hudsons in Northern California. The airport and plane ride were surprisingly manageable since we didn't have to take a stroller or car seat. (Maya had spare ones that she let Evan borrow.) We enjoyed a little bit of sunshine, a little bit of rain, a little bit of pool time, and a little bit of Target. We even managed to get the ENTIRE family playing a game together. Success. The only tragedy was I didn't use my camera at all so these are all iPhone pictures.

2nd plane ride ever 

After-pool robe and corn on the cob with Daddy 

Maya's tour of one of her favorite places on Earth

Family Game Night (no TV for a change!)

One highlight of the trip was watching Hudson family videos from Isaiah's 9th birthday. It was pretty much the worst birthday ever. I don't suggest asking Isaiah about it.

Another treat was going with Isaiah, Sarah, and Papa Hudson to Six Flags Discovery Kingdom while Grandma Hudson and Maya took care of Evan. It's like a zoo and an amusement park mixed into one venue. It was nice to hit a few rides rides and then watch dolphin, tiger, and elephant shows while waiting for our stomachs to catch up with us. Then we hit some more rides. The roller coasters were bigger than I expected and I loved them. It also helped that it was sprinkling all day so there weren't many people at the park and the lines were excellent! I think I'd vote Superman as my favorite ride since it was so unexpected and unique. Isaiah loved the wooden roller coaster. Evan loved scarfing down an entire jar of sweet potatoes while we were gone. Lest his pictures deceive you, he continues to be an excellent eater.

While driving to the Oakland airport on our way home I stared across the bay towards San Francisco for a long time. I was glad there were two massive bridges distancing me from there. I almost feel scared to go there, like I would get stuck there for a long time again or something. I don't really know how I feel about that place. It was such a terrible time brought on by us having such high hopes for our son's future. It also resulted in such a good thing--our baby. A year ago when we were preparing for fetal surgery, who'd have thought we'd be in such a great place, developmentally, with Evan right now?

At 8 1/2ish months, Evan can get up on his hands and knees. He can sit, unassisted, for a few seconds at a time. He rolls from back to side and apparently also from tummy to back while in his crib (though I've never seen it--I've just found him on his back in the middle of the night). He can hold a spoon to feed himself. He can grab things that are held up in front of him but not quite if they are on the ground in front of him. He is very expressive, with smiles when he's feeling flirty and high-pitched squeals when he doesn't get what he wants quickly enough. He hits the high chair table with his hands in between spoonfuls to let me know he wants more. He kicks his legs behind him while laying on his tummy. He doesn't cry anymore when we sneeze or blow our noses or slide our chairs on the ground. He has 5 teeth that have come in a very random order. He's still missing one of the top middle teeth. I guess it's a hole for his thumb which he's learned to suck. He talks a lot, most saying "Dada."

And His Name Shall be Called...

It's really hard to pick your child's name. There's a lot of pressure in choosing something so permanent for someone else. It's even harder when you and your husband don't agree on the matter. Since even before we were married we talked about what names we liked. Inevitably one of us would have some sort of negative association with a name the other one liked or the name was too common for our either of us to agree to. If we ever came to a consensus on liking one (meaning I liked it and Isaiah didn't hate it) then I would write it down on a sticky note. After about a week I'd look at the list and cross out half of them because I didn't like them anymore. I'd read the list back to Isaiah and he'd eliminate a few more because he didn't like them anymore. Somewhere along the line "Evan" joined the list as did "Miguel", which was after a boy I knew in D.C. (I thought we could get away with naming our son Miguel if the baby came out dark like Isaiah.)

This battle continued for months while I was pregnant with Evan.

In the meantime we were getting bugged by so many people demanding to know the name of our unborn son. To appease them we decided to call the fetus "Walter." This, in turn, bugged everyone else who knew we wouldn't actually name a child Walter.

After our first ultrasound we found out that Evan was a boy and also that he had spina bifida. We went home and cried a lot and prayed a lot. I really felt like I wanted to have a specific name to pray for when talking to the Lord about my son. I looked over the list and really like the name "Evan Michael", or Evan Miguel. I asked Isaiah and he seemed indifferent. I told him that unless he told me he hated it then I would start calling our baby Evan. The name was basically decided when I was 19 weeks along, though we didn't tell ANYBODY (much to their dismay).

Just 5 weeks later I was on a flight to California to prepare for fetal surgery. My mom dropped me off at the airport (Isaiah would join later) and gave me a letter from my dad. I tucked it away and read it that night as I was getting ready for bed. The last line said, "P.S. I think the baby's name should be Evan. I looked it up and it means 'God is good.'"

When I told Isaiah about this he thought I had spoiled the secret. I thought that HE had spoiled the secret. In later conversations my dad would keep saying things like, "I think Evan is going to be okay..." but Isaiah and I would try to blow it off and say, "Yeah, Walter will be fine..." It became a running joke that my dad would call Evan, "Evan" since clearly he couldn't know the name since we hadn't told anyone.

A couple days before Evan was born Isaiah and I were again discussing names in the hospital room. I told him, "You know, I wouldn't totally hate the name 'Evan Walter'." At that point the name Walter was so fixed in our minds that it kinda sounded right to my pregnant brain. My wise and logical husband said, "Do you really want that?" I said no. We both thought we should stick with Evan Michael.

On the day Evan was born, when we finally told my parents that we chose the name "Evan Michael Hudson," we all cried. I told them we had chosen that name long before my dad wrote the letter. He said he had been praying when he felt inspired that "Evan" was our son's name. It confirmed to me that we really had chosen the right name.

SB Clinic and Heterotopia

We had quite the uneventful spina bifida clinic on Friday. Clinic is basically like pediatrician visits for children with spina bifida (though we still have our regular pediatrician visits as well). We're currently scheduled to go every 3 months for check-ups with all the spina bifida specialists. Eventually it should become a once-a-year event. People travel from across the state and even from out of state to come to come to clinic in Salt Lake City. I hear loads of horror stories about clinics in other places but I don't hear many complaints about the doctors at Primary Children's. We are SO fortunate to be living here right now.

The hardest part of clinic is that it can last all day depending on which specialists you need to see and what procedures need to be done. This time we had 3 hours of doctor visits, one hour of a bladder study, a 2 hour break, and then a 30 minute renal ultrasound. We met with genetics, social work, physical therapy, occupational therapy, neurosurgery, urology, dietetics, and a nurse practitioner. (Orthopedics and neurology were not there) Most of them didn't say anything blog-worthy. Evan was a rockstar!

The iPad camera was an excellent distraction in between doctors

Waiting for the VCMG

Lunch break! Oh, how I love the memories of hospital food

After 7 hours at the hospital, Evan finally crashed

The most interesting discussion at clinic was a neurological finding from Evan's brain MRI. We've known about this since our fetal MRI that was done last August but it's just now becoming meaningful for us as we see how it is influencing Evan's development. Evan has periventricular heterotopia in his brain. Basically, our brains have grey matter and white matter that should separate during development. Heterotopia is when some of the grey matter doesn't migrate properly during development so there is grey matter left in the white matter. Like spina bifida, the symptoms of heterotopia vary widely. Some people don't even know they have it until they have an MRI done while others may have severe seizures, loss of motor skills, or mental retardation.

Evan's current display of heterotopia seems to be somewhere in between. He has high muscle tone and is typically very rigid in his upper body. His hands also tend to be fisted. Some of his fine motor movements resemble someone with cerebral palsy. Chances are his fine motor challenges are caused by the heterotopia and we should be able to work through this as Evan continues to grow. For now we're going to increase his therapy and monitor him closely with neurology.

I'm not really worried about these findings. It's actually exciting for me to learn more about the brain and how it relates to some of Evan's behaviors. I have a CD of Evan's fetal MRI images which I'll share as soon as I can find it...Who gets to see real images of their child's brain?!

Progress

We've got forward motion!

I'd post a video but Evan's crawling is so slow and nearly imperceptible that I get bored filming it and you'd get bored watching it BUT...he does it!

Apparently most kids start with army crawling. Evan discovered a better way:
1) Lift up the head
2) Tuck in the knees
3) Lunge forward onto face
4) Repeat

He can go about 2 feet before getting tired.

Other progress of note includes:

• Holding objects with entire hand
• Holding objects with one hand
• Picking up objects from the ground
• "Self feeding" (shoving a spoon full of food into his face)

On the one hand I'm thrilled with the things I'm seeing Evan do. On the other hand I'm thinking, "It's about time!" Like how he's eight months old and can crawl but hasn't the slightest inclinations towards rolling or sitting. Oh well. My son is awesome. I'm happy.