Thursday, August 29, 2013

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.

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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!

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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.

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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.

Wednesday, August 7, 2013

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.

Thursday, August 1, 2013

Wanted: Advice

So my son looks like Hitler sometimes.


Starting yesterday Evan starting refusing his bottle for hours even though he seems hungry and is awfully cranky. He will eat solids. He is also a little clingy, only wanting to be held rather than put down on a chair or on the ground. He isn't sleeping or napping well either. No fever. No new teeth are showing. Any suggestions?

I really need to make videos of this little cutie because he's really funny sometimes.



UPDATE: For the first time since moving to California Evan slept through the night last night!