Zero no more

In the past few months, my sweet five-year old Jacob and I have had the following conversation several times:

J: Is Sam zero?
Me: Zero what?
J: Zero years old.
Me: No, he's six months old.
J: So he's six?
Me: No, he's six *months*. It's like half of one.
J: So he's one?
Me: No, he's not one yet.
J: So he's zero?
Me: No, he's not exactly zero either. He's part of one year.
J: So he's one.
Me: When babies are small, we tell their age by months, by parts of a year. So he's not one whole year yet.
J: So he's zero.
Me (with sanity-preserving smile): Yes. Okay. He's zero.

Several. Times.

Tomorrow is our Samuel's birthday and he will be zero no more. I will probably spend much of the day processing that my littlest baby is a whole year old - not really a baby anymore {sniff sniff}. And I will likely also spend the day doing some "this time last year" kinds of thinking. In fact, my mind and heart will probably be full right up on remembering and reflecting and thanking thanking thanking. So I thought I would give a little update on Sam a day early.

Favourite toys: Daddy's head lamp. And anything that crinkles. So his birthday presents will include spendy developmental items like tissue paper and candy bar wrappers.

Favourite games: Peek-a-boo. Also, the "I know you've been asleep for exactly 14 seconds but I would like to eat some more right now please" game. That's a big hit, that one.

Oh, and I also like to "read." This is a particularly good book that Nana bought me for Christmas. Nom-nom-nom.

Favourite songs: "Sing a Song" sung by Mommy who does NOT have Karen Carpenter's angelic voice but Sam doesn't care. "Amazing Grace" sung by Daddy. Also, "who let the dogs out WOOF! WOOF! WOOF-WOOF!" sung by anyone.

Favourite words: "Uhn-da-da-da-da!" uttered with great expression. Okay, maybe that's not really a word. He is getting more communicative though. We've played "itsy-bitsy-spider" so many times that he will make a little spider with his fingers when I ask. We've worked on him opening his mouth wide for food and making him bite down rather than slurping off the spoon, so now when I say "do you want to EAT?" he opens his mouth wide. Ridiculously wide. Like he got lockjaw in the midst of a yawn. 

Favourite food: Greek yogurt (probiotic and 10% fat, woo hoo!) mixed with pears and prunes (poop, baby, poop!) and secretly drizzled with flaxseed oil (omega-3 fats, yay!).

Because my life with three big brothers isn't over-stimulating enough...

In other news, Samuel had an appointment with the ophthalmologist last week (henceforth referred to as Eye Guy because the spelling of ophthalmologist annoys me). Eye Guy said that Sam's visual acuity is currently estimated to be in the 20/60 or 20/80 range (with 20/20 being perfect acuity). However, there are other things affecting his ability to see, primarily the photophobia associated with ocular albinism. The way that I understand it, there is not enough pigment in the retina to support development of the fovea, which processes light. So bright light enters the eye and "fractures" into bits, obscuring whatever image he's taking in.

We are also now seeing the start of astigmatism and a bit of strabismus (eyes turning inward slightly). This is not unexpected but it still sucks to hear that Sam's vision is worsening. He will likely have glasses in the next few months to help with the astigmatism and may need eye surgery at some point to help with the strabismus. I continue to manage the light issues with a series of adorable brimmed hats and bossy "could we turn down these lights and shut off the flourescents?" tactics where ever I can.

Sam's eating is hard work at this point - for me, not for him. For nearly a month, his intake has stayed well below the minimum amount that he needs for hydration. I try to compensate for that with fluid-rich (and pro-pooping) foods. He's maintaining his weight and hydration and his sweet baby antics. He continues building strength - sitting independently, rolling everywhere and wiggling himself across the floor on his belly.

The surgery next week will take him back a huge chunk in his development of gross motor skills and I could feel really bummed about that if I let myself. And I could also be really scared about the whole thing if I let myself. But I don't because, really, what's the alternative? He can't plunge forward in life with a hole in his diaphragm.

We're in preparation mode for surgery now. Last week was a series of meetings and consent signings and tests - five hospital appointments across three days. The meeting with the anaesthesiologist was the one that really brought it all home for me. He was very honest: this is a complicated surgery and Sam will have a tougher recovery with more pain and potential difficulties than last time. The doctor was wonderful and welcomed my questions. I know I could have asked more and he could have told me additional things that would freak me out. Once upon a time, I was that mom who came in with a page full of questions to make myself feel like I have more control than I do. But I can't fix his diaphragm and it needs to be fixed. So I have to trust them. And I do. Because they're great doctors and they care a whole super-duper lot about my guy.

Remember all that surrender stuff I talked about? Yea, well, some more of that. And if it sounds like I'm just busy talking myself into platitudes that ease my fear and exhaustion, well... whatevah. Afterall, as Lesley says, I gotta keep my big girl pants on.

Our beautiful Sam, enjoying his last day of zero-ness.