Evan turns One!

There was a cake.

There were presents.

There were party hats and one balloon and a one dollar bill.

 There was a slight bit of fear.

And just a moment of hesitation until...

He learned how to eat cake like it was his job.

Happy Birthday Evan!

I had a lot of fun making Evan's cake. I used multiple cakes as my inspiration for it but I simplified them to my amateur ability level. Eventually there will be a link here to a little tutorial. 

We didn't mean for Evan to have so many presents. I really didn't think my child would be one of those kids...you know, the ones who are spoiled with so many toys that they don't even know how to play with them all. So much for that. But actually a lot of his presents were things we were going to get him anyway like long pants, long shirts, sippy cups, bowls...that kind of stuff. We spaced out the present opening during the day so he wouldn't get worn out. He was really good at unwrapping until we put on our party hats at night. He got really distracted by the four adults staring at him with strange things on our heads.

Evan loved his first experience with a balloon. People with spina bifida are more likely to develop a latex allergy so it's recommended we keep him away from all latex things...which means no latex balloons. (Not like infants should be playing with balloons anyway) Mylar balloons are safe but they're much more expensive so we just got one. He loved hitting it and shaking the string to make the balloon go up and down.

We didn't do much to celebrate during the day--just our routine speech therapy and playing with toys. I wanted to take him to the Python Ron reptile show at the library but he was sleeping so I left him with his daddy and went by myself. There was a bird-eating spider and several lizards and snakes. He even had a green anaconda that was several feet long.

Happy birthday Evan!

Punkin Patch

Last year Grandma Hudson tried to bring Evan a pumpkin in the NICU and they didn't allow it so he didn't get a pumpkin. Every day when I was shuttled to the family house from the hospital we passed by a pumpkin patch. I saw all the families going in and picking their perfect pumpkin to carve and I wanted so badly to just be a normal family going to the pumpkin patch to celebrate a normal Halloween. I hated the NICU.

It was like a year-long dream come true tonight as Evan, Isaiah, and I picked our perfect pumpkins at this ginormous pumpkin patch in Dixon, CA, home of the world's largest corn maze. It really was big. Really big. I loved every blustery second of it.

A Voice

Although I love NBC's "The Voice", that's sadly not what I'm blogging about today. Maybe another day.

It's Spina Bifida Awareness month!! Isn't it nice that Evan was born this month? Now I've always had a voice (and opinions to go with it--just ask my husband) but Evan has given me the unexpected gift over this last year of feeling like what I have to say is important. I've developed an eagerness to share our experiences and feelings in order to bring about that all-important AWARENESS. My hopes are so high, I can't even begin to describe how big my goals have become to do great things and be a better person.

I was so flattered recently when I received a special request from a stranger who read my blog. I never before thought of strangers reading my blog but I've actually had a few people reach out to network and connect with me. Heather has an important message and story. She invited me to share her voice on my blog and I'm happy to do so in the spirit of this month of awareness.

Heather's Story: I am a wife, mother, and a mesothelioma survivor. When my daughter was 3 ½ months old, I was diagnosed with this rare and deadly cancer, and given 15 months to live.  My prognosis was grim but I knew that I needed to beat the odds for my newborn daughter, Lily.  It’s been 7 years now and I feel that it is my duty to pay it forward and inspire others.

I clung on to hope throughout my whole journey with mesothelioma. When you have hope, it makes the battle easier.  I want people to be inspired by me, I want to make them fight; give them something to hold on to when all else fails. That is why I do it.  If I inspire one person, I've done my job.

I'm using my personal story to help raise awareness of this little known cancer, and to provide a sense of hope for others facing life’s difficult challenges.

Here is a video of my story that I am hoping to use as a tool to raise awareness: Click Here to see Heather's Video

I'm so inspired by awesome people. I want to meet all the awesome people in the world and learn all of their stories and tell everyone else about how awesome everyone else is. Thanks, Heather, for letting me share.

I also know someone else who is starting to share his voice...Evan just started speech therapy two weeks ago and he's doing great! If you asked me beforehand what I thought about an 11-month old in speech therapy I would have said, "There's nothing they can do that I'm not already doing at home. 11-month-olds aren't supposed to talk yet anyway so it's not gonna help." If you asked me shortly after our first therapy session how it went I would have said, "I didn't realize I've been talking to my son so poorly for the last 11 months. No wonder he's struggling." After I processed the experience and thought about it for a while I would now say, "Speech therapy is awesome for supplementing my infant talk for children who process speech differently." Evan just needs extra help to learn some things and I'm super grateful to be given all of the resources we have to learn how to do this.

So what does an 11-month old do for speech therapy? Right now we're working on mimicking gestures. Beginning speech is really just copying and experimenting with vocalizations and in order to learn how to copy speech he'll first need to learn how to copy anything. We're starting with big things like clapping or pat-a-cake. Then we'll move to fine motor movements and then to sounds. I'm also learning to simplify and repeat my talk during routines to teach basic words. The therapist also has this vibrating stick thing she puts in Evan's mouth to stimulate it. He likes it. I'm confident we'll have a little chatterbox on our hands in no time!

In June, at 8 months old, Evan couldn't roll over, crawl, sit up, bear weight on his legs, self-feed. Now, just 4 months later he's mastered rolling and he loves eating little finger foods. He can sit up independently and then move from sitting into crawling position. He can crawl around rooms and crawl to toys he likes (though he frequently just crawls straight to mama). He will sometimes even bear weight for a second or two, which is actually a big deal to us. I never thought I'd see the day, but sometimes he even entertains himself for a few minutes. Woohoo! Free time for mommy! It's crazy to see how, even though it's been at his own pace, he's learned how to do everything he should be learning. And he has a goofy smile and a silly personality and he makes me laugh and just love bein' a mom.

Happy Spina Bifida Awareness month!

Mmm...leg rolls

Jelly Bellies and Brains

Fairfield, CA is home to one of two Jelly Belly factory visitor centers in the U.S. We took Evan for the walking tour which included samples of Jelly Bellies in all their stages--middles only, pre-finishing, and finished products, of course! The newest Jelly Belly flavor is tabasco. It's nasty. They also have chocolate dips, soda flavors, and the crazy flavors like lawn clippings and stinky socks. The tour walks you around (above) the factory where you watch movies about the Jelly Belly-making process and wave to the workers. They have Jelly Belly murals of famous people like Ronald Reagan who loved Jelly Bellies. The visitor center has a sample bar with all the flavors and a fudge sample station, too. They also sell Belly Flops which are the mistakes--too small, too big, doubles, etc...

I also found Evan's MRI pictures of his brain and spine. I can only get one good one for now but I'll keep trying to post more clear ones of his heterotopia. He's such a cute little alien! Seriously, though, isn't this cool?

Sitting Up

We finally pulled out the "fancy" camera (rather than the iphone or ipad) and had an impromptu photo shoot to celebrate Evan learning how to sit up on his own. Woohoo! My favorite thing is that Evan is wearing Maya's old Sponge Bob shirt. She was obsessed with Sponge Bob. Evan has never seen so much as a second of Sponge Bob and I'm hoping to keep it that way. And you better bet I was jumping around, throwing things, and making noises behind Isaiah to get these smiles.

August 29, 2013

Might as well call my son Evan "Michael Phelps" Hudson. Evan has grown quite the obsession with the swimming pool. He loves staring at it and he loves splashing in it. He doesn't love drinking the water. Most of the time he stays in his little floatie/raft thing but sometimes we hold him so he can splash around more freely. Yes, he's only wearing a diaper.

He just started rolling and also scooting around a bit just a month ago. I'm super happy that he's learned these tricks, no matter how "late" he was. I don't think Evan's new physical therapist really knows how big these milestones are for him. We've only seen her twice and she's already talking about bracing and using a stander to build up Evan's leg strength and get him walking. I do think he'll walk, but I'm really not thinking it'll be any time soon. And I'm certainly not worrying about it right now. Look how awesome he's doing!

Another area we've seen huge progress is with his hands opening up. We got some little hand splints that go over his thumb and wrap around his wrist. The purpose is to open up his hands from their typical fisted position. He can self-feed bottles and pick up little pieces of food now. He loves food. Pretty much all foods.

We like having a fenced backyard and a tree in our front yard with shade. Oh, and the rocking chairs on the patio are nice to sit on while we watch the neighborhood happenings. Evan seems to love watching the cars drive by. It seems like every other car here is a truck which is even more exciting. We saw a little boy across the street and decided to go meet him. His name is Mark. He is just a couple months younger than Evan and was born really early and also stayed in the nicu a long time--much longer than us. We're gonna have some play dates with him soon. We've also made a few friends in the hallways at church--all the other noisy children--though they don't compare to Evan. He by far wins the award for loudest child at church in this ward.

One Year Ago

One year ago, today, I took a risk.
One year ago, today, changed Evan's life before he was even born.
One year ago, today, Evan and I both had our very first surgeries.
One year ago, today, my water broke.
One year ago, today, Isaiah and I realized we'd have a very difficult next few months.
One year ago, today, was our fetal surgery.

This morning Evan woke up at 5:30, as he's starting to do now. He drank 6 ounces and then played in his bouncer. He loves grabbing the toy remote and his frog rattle from the hanging links and bringing them to his mouth. Sometimes his mouth accidentally turns on the music for the remote which surprises him. He rocks himself on the bouncer.
I took him out and put him in his high chair with his green car and the rock 'n stack toy so I could eat some breakfast. If I put all the stacking rings around the outside of the high chair tray then they prevent the car from rolling out of his reach. He loves his green car. Sometimes it drops on the ground and he'll look to find it. Sometimes it drops on his lap and he can't see it so he grabs the rings instead.
After a while Evan started getting restless so I prepared some more milk. He couldn't drink it because his nose is completely stuffed so I used his favorite (note the sarcasm) saline spray and bulb syringe to clear out some mucous. He screamed quite a bit but then was able to drink more. I noticed his neck was full of lint and dirt so it was time for a bath.
We've got a nice little bath routine down now. Undress in the room while the water gets warm. Wrap up in a towel and go into the bathroom. Sit Evan down in his infant bath seat since he can't (YET) sit up on his own. Wash legs, then belly, then arms, then neck, then hair. Splash water on his belly and enjoy hearing his laughing. He kicks the water and gets me wet. Rinse off. Wrap up in towel and go to the bedroom. Get dressed and snuggle.
He drank a few more ounces (after another enjoyable bulb syringe session) and went down for a nap. I work online while he sleeps. Then he'll wake up and we'll play again. He'll probably spend some time in his jumperoo where he loves to spin the salamander toy and jump and jump and jump.
Somewhere between 1 and 3 Isaiah will come home and take over so I can work a couple more hours. Sometimes we all nap in the afternoon.
We do this every day. Our lives are so normal.

One year ago, today, I would never have believed this.

Health Check-up: I don't think I ever mentioned how we've eliminated one of Evan's specialists. Our 9 month cardiology appointment went well. He hasn't had any episodes of SVT (as far as we can tell) since the NICU so we've officially been given the approval to take Evan off his heart medication. Most kids just grow out of SVT so we're hoping that was the case with Evan and we'll never have to worry about his heart again.

One specialist we do need to see is an ophthalmologist. It's pretty standard for a child with hydrocephalus to have an eye check-up before age 1 just to make sure the pressure in his head isn't messing with his eye sight. I think Evan is fine, but I also wouldn't mind seeing him in some baby glasses. They're probably obnoxious to worry about but I think they're SO cute! We had an appointment set up in Utah but we had to cancel it when we moved so we need to find a new pediatric ophthalmologist here.

We're also working on finding which spina bifida clinic we'll go to in California as well as which early intervention program we'll use. All of our doctors in Utah were chosen by a discharge nurse in the NICU and  I was happy with all of them. I'm just now realizing how nice that was. It's a little annoying to start over with doctors who don't know Evan, but I'm hoping for the best.