Sunday, June 16, 2013

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.

Monday, June 10, 2013

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?!

Wednesday, June 5, 2013


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.