Oversharing the medical info

This week has absolutely kicked my trash.

Cars broke down, I missed very very very very important appointments, showed up late for other ones, waited around for another appointment that apparently didn’t exist, stressed over projects that are shots in the dark, and basically just let my whole life get completely away from me.

Juggling as much as I am between my little needy guy and my silly needy self, it doesn’t take much of a misstep before I drop everything and it all comes crashing down around me. That’s how this week feels.

Atti’s eye surgery is coming up on the 7th, I’ve got two additional appointments for it on top of the usual four appointments a week, and then I’ve had a ton of my own appointments trying to track down the cause of a bunch of vague mystery symptoms. I’m like my very own version of House over here. I haven’t wanted to blog about it because I didn’t want to be a drama queen, and Heaven knows there’s enough drama in my life without making stuff up, but this quest is dominating so much of my time and my thoughts that it’s hard to keep it to myself.

Over the past year I’ve been growing increasingly tired. Not just new momma tired, because I’m not sleep deprived at all and I’m not exactly chasing him around the house. No, it was more like, I have to sit down in the middle of the staircase because I’m too exhausted to take it in one trip, tired. Like, I can’t lose any baby weight because I’m so tired that my feet in sneakers are too heavy to lift. Not really normal. I had all the typical tests – thyroid is fine, iron is fine, potassium is fine, I pass the depression screening, no lupus or rheumatoid arthritis – and then just chalked it up to part of being a woman. We’re all tired, right?

Then the headaches started, and the blurry vision, and terrifying memories of my trouble with high blood pressure made me take this whole thing a little more seriously. I had my pressure screened and it was dangerously low. Suddenly all these symptoms that are totally benign on their own are a little frightening all lumped together. I have a history of fainting, but nothing dangerous. I have asthma that I’ve never really been able to properly control. I get tired, headaches, blurry vision, poor circulation, random little bumps and flutters in my chest….and then the doctor heard a heart murmur.

I can’t seem to help myself from savoring the drama in the telling of this story, but I’m not on the verge of death or anything. In fact, what is freaking me out so bad is the fact that this is probably something that I’ve lived my whole life with and it’s not worth doing anything about, which means that I’ll always feel a little cruddy. The thought of needing to get a valve replaced is actually comforting to me, that’s something they can fix. It’s the thought of having to live the whole rest of my life just kind of weak that is really terrifying to me.

Anyway, I’m going in for an echo cardiogram on the 10th, just after Atti’s surgery, to see what’s going on in there and if there’s anything to be done. For the next few weeks posting is probably going to be a little on the light side, but I’m going to do my best to avoid just sitting around chewing my nails to the quick.

P.S. Just so I don’t leave you in a bummed out state, here’s an adorable palate cleanser for you. Atti and Bear celebrating the Laker victory.
Yeah Lakers!

Father’s Day

We spent Father’s Day in Orange County with Bear’s family, and we couldn’t call it a fun weekend without tossing everyone in the pool.
Dad and baby

Atti kept trying to drink the pool water.
Splash

This little guy is a moleman, just like his mom. Every time we go outside together we both screech like vampires.
Melting in the sun

Get a load of this ‘do. Who needs hair gel?
Wet Hair

Atti’s developed such a strong personality, every day it’s more fun to watch him interact with the world.

2009 Year of Pleasures #24

A dream come true…

Dance Party

I’ve never been a baby person, and whenever I would talk with friends about having kids I always used to say that I wish they came out at three years old. That’s when they can talk, and color, and play, and until I had my snuggly little guy, I just never saw the appeal of them any younger.

I have since become a convert to babies, especially little baby necks that just beg for nuzzles, but I am in absolute heaven right now – still trailing the last of babyhood, accepting all my smothering kisses, and yet starting to communicate with the world, starting to play. This is really a spectacular age.

Atticus is just as music obsessed as ever, and the other day when a particularly bouncy song came on I just couldn’t help myself. We spun and bopped and danced around the living room together, Atti laughing like a madman the whole time.

Dancing

This motherhood stuff. It’s pretty great.

Atti’s on a roll

Look at him go!

Ladies and gentlemen, my son can now officially sit up on his own.

A new day has dawned. Now I can take him to Target and not face the struggle of carrying him in my arms while I push a cart, or trying to push a cart and a stroller at the same time, or trying to haul around a 20 lb car seat full of 20 lb kid.

No, no. Now I can sit him in the cart like a regular old kid. Now he can sit up, supporting himself, without any help. Now he’s getting closer and closer to independence.

Atticus can sit up!

I’m so proud of this guy I can barely stand it. He’s such a little champ.

Next step? He gets his eye operated on July 7th. It’s terrifying, but good. I’ve learned that every single thing is connected, and once he’s got those eyes fixed I’m sure that he’ll keep this streak alive and accomplish even more.

What a little wonder.

A Cure for the Blues

With as frequently as the sad days descend around here, I pride myself on how hard I work to avoid the pity parties. For every weak day I share with all of you, there are hundreds more weak moments that I force myself past with a stiff upper lip. And then when I just cave in and need a day to feel sad and worried, I never indulge myself too long. I know I need to feel my feelings, but I also don’t want to spend a lot of time on things that won’t solve any problems.

So, with that being my focus I set about kicking my gloom this weekend. I did my usual routine of indulging in things that bring me pleasure, I slept in, watched lots of lame movies, and then decided to tackle a smallish but nagging project so that I could feel like I had accomplished something. We picked up a bunch of plastic bins from Target, I busted out the good old P-Touch labelmaker, and I went through everything in Atti’s closet to see what still fit and what could be packed away.

As I was folding all those tiny clothes, I couldn’t help but get nostalgic about where he’s been. All the preemie clothes that we dressed him in in the hospital, threaded over tubes and wires; the clothes we were given from friends and marveled at, thinking he would never fit; the clothes that were permanently stained with spitup from the months and months we tried to get him to eat and keep it down despite the acid reflux. All those things that terrified me last year, are no longer an issue. He’s faced all those early threats and tackled them, I have no doubt that he’ll just keep right on going.

And then, if I needed another reason to kick off the self-pity, yesterday Atti decided to crawl:

Maybe he realized he was starting to freak Mama out and it was time to stop playing around.

Another Funky Day

If you’ve been reading along with me for any length of time, I’m sure that you’ve picked up on the roller coaster of emotions I’m on trying to parent my sweet little guy. Sometimes I wonder how different this would be from parenting any other child. Maybe I would still have days like today where I’m sad from all the pressure and worry I feel trying to help him meet his full potential. Maybe it’s just part of parenthood. Maybe it’s all hitting me harder because right now the stakes are so high for him.

Atti and his piano

As of yesterday Atti is 16 months old. His adjusted age, what he would be performing at if everything was perfect, is 13 months old. But he still can’t sit up independently, he can’t hold a bottle, he doesn’t crawl or walk. He struggles to eat mushy carrots.

I know I’ve written this post before. This is part of going through therapy. He has fallow periods. There are long stretches where it seems like he’s doing nothing, and then one day I’ll wake up and all of a sudden he’s got a new skill conquered. Those fallow periods are integral to therapy. He’s slowly building muscles, gaining size and strength, conquering all those infinitesimal steps along the way to achievement that I can recognize. I know that in a few weeks I’ll be in a new place, with new skills we’re working on. But the bigger he gets, the more these fallow periods wear on me.

This weekend we went to cousin Micah’s birthday party. 20 six year olds were running around having a wild rumpus while I sat on the couch with Atti just watching. I held the 7 month old baby of Bear’s cousin and I was absolutely shocked at the difference. The baby offered resistance. He stood on my lap like a ship captain. He sat up without my help. It was probably the first time I’d held anything other than a newborn in Atti’s life and the difference was heartbreaking. You tell yourself that he’s not that far behind. He’s not that different, he’ll just catch up. And then to feel it for yourself…it’s kind of hard to stay in your denial bubble after that.

So I gave the baby back, took Atti off his grandma’s hands, went back to watching the other kids run around, and thought about Atti’s future. He’s now 25 pounds of dead weight. What not too long ago was a delightfully snuggly little feature, is now serious work to carry around. His grandma is 5’2″ and already struggles to manage his little body. We are not far away from addressing using a stroller like a wheelchair, everywhere we go. And that would mean a whole lot more sitting on the sidelines and watching as all the other kids ran around and played.

Then on Monday we went to the birthday party of a friend of ours. They took over a little pizza place and we all got together to have a nosh. But we got there late so the place was really crowded and all the chairs were taken. We left the stroller in the car thinking that it would just be hard to manage and in the way, and we’d be fine once we were sitting, but then there was no where to sit. So we ended up standing against the wall trying to juggle Atti, the big diaper bag, and two plates of food. Then Atti choked on a noodle and barfed all over Bear, so we threw up our hands, apologized to our friends, went home and I’ve been despondent ever since.

There’s just such a steep learning curve to parenting this kid. He wants to move so badly. He gets so mad, he throws tantrums, he bangs his head against the floor. His tests say that he’s advanced in a lot of the emotional/intellectual aspects, so my little guy is already entering his terrible two’s, exacerbated by the fact that he cannot do what all the kids his age are doing. He gets mad, my heart breaks even more, and I can’t help but think about what our lives will be like if he never gets more mobility.

Atti in the Exersaucer
I keep trying to remind myself of that parenting mantra – Everything will pass. For good or for bad, everything will pass. During these fallow periods it’s so tempting to think that things will always be like this. That from here on out, this is what my life will look like. But it won’t. He may be going slower than other kids, but he hasn’t stopped yet. So I just have to find a way to hang in there.

Summer is here

Waves

Bucket Hats

Toes in the sand

Flip Flops

Nape

Swingers

Father and Son

What a beautiful day. It’s going to be a great summer.

Busy busy busy

My healer quilt is in the wash, the therapist comes in two hours and I have two days to make a second quilt for the church auction, when I’ll be gone most of today. I’m frantically working my fingers off, so I figured you’d all forgive me as long as I post baby pictures.

Big boy
This picture terrifies me. Where’d my baby go? Who’s this small child?

Toothy Grin
Who’s this small child with six pointy teeth?

Playing outside
I keep wanting to spend as much time outside as possible before the hot weather moves in, but since Atticus is still immobile, that gets to be a little tricky. I finally pulled out the Pack n Play, tossed him inside with half the contents of his toybox and let him have himself a little toy orgy in there.

Partners in Crime
Since this picture was taken Atti has decided that he is so over the whole patching thing, and hasn’t let us patch him for weeks. We go back to the doctor on Monday where we’ll get special drops to put in his eyes to use instead.

Lobo and Atti are still best of friends. In fact, I just had Atti laying across my lap taking a bottle, and Lobo jumped on the desk, wound through the mess of glasses and papers, crawled down on top of him, and laid down for a snuggle. It’s like I have the dog babysitter from Peter Pan.

OK, I’ve got to get back to the sewing machine. I probably would have been done with this by now if I hadn’t had the bright idea of doing another big embroidery piece. Oy. Sometimes I need a good shaking.

The sun came out…

About a month ago, I was complaining about being deep in the motherhood trenches. Caught in a stagnant stretch where things seemed far too difficult and taxing than I had the resources for.

I’m now safely free of it.

I’ve always heard mothers say, “Oh it just seemed like he [fillintheblank] overnight!” And I always laughed politely because that’s the kind of thing that every mother everywhere says like it’s the most profound statement in the world, But I never really thought they meant literally overnight.

A week ago Thursday Atticus went to bed the same little kid he’s been for months. Still not sitting up, not crawling, not eating, communicating with a system of claps and giggles, and then he woke up Friday morning a kid with a whole new set of skills.

For months we’ve been working on his eating skills. The cerebral palsy makes controlling his tongue and mouth movements difficult, so it’s been interesting to learn just how much work goes into something that comes so naturally for most of us. He’s 14 months old and he still gets all of his nutrition from a bottle because he just doesn’t have the control to make the food do what it’s supposed to do. Until Friday morning. When he suddenly started eating his food from a spoon three times a day, and chewing up little pieces of Cheerios or cooked peas. For a solid week now he only uses his bottle for drinks and eats everything else like a real boy.

Lobo with the interception
Lobo is less than thrilled at Atti’s newfound skill with the spoon. He has to work a lot harder to mooch now.

He’s starting to respond with actual words, he’ll sit up in his high chair for an hour at a time, he’s starting to get a knee underneath him when he’s on his tummy. The other day Bear fed him a dinner of nectarines and green beans and made the mistake of giving the nectarines first. Atti spit out the green beans, clammed his little mouth shut, tossed his head all around, until I finally caved. I didn’t want to start fighting over food when he was just now starting to be positive about it. No sooner did the words, “Fine, let’s give him some more nectarines.” exit my mouth than he started grinning and let out a chuckle of self-satisfaction so perfectly timed that it seemed like a sitcom. Maybe tomorrow he’ll work on developing a poker face.

His therapists are overjoyed, we hugged and cried together, just amazed at the iron will of this little guy. He’s taking his own time about things, but he’s doing it.

Atti’s Playlists

Last week when I posted that video about Atti’s obsession with music, I got a couple questions about what he listens to, so I thought I’d share our favorites and hopefully hear about a few of yours.

His go to music that never fails is anything by Elizabeth Mitchell. She’s amazing. She can turn anything – folk songs, punk, reggae, – into music for babies by her simple guitar and clear voice. So far she’s released You Are My Little Bird, You Are My Flower, and You Are My Sunshine, and I’m waiting with baited breath hoping she’ll release something else soon. I think Atti likes her the best because she sounds like a mama singing.

We’ve started listening to a lot of classical music and opera – especially when I need a peaceful moment – and we listen to a lot of world music, but especially Ladysmith Black Mambazo. Bear lived in South Africa for a couple of years and came back totally hooked. It didn’t take me long to become infected as well. I’d play Shosholoza to my belly and feel Atti start wiggling around to the music. You can’t be sad when this comes on.

I also really love Kites are Fun by The Free Design. I have no idea what the story is on these guys. They kind of sound like the people who sang that song Afternoon Delight, but instead of singing about nookie they’re singing about bubbles and kites and running through the grass. I don’t know if it was intended as music for kids or what, I only found out about them because one of my favorite podcasts uses the music for their intro, but it is thoroughly delightful.

They Might Be Giants is also crazy awesome for kids now, and while I don’t have their ABC or 123 collections, I have been a subscriber to their podcast where they share the songs and animated clips. Atti just stares at the computer screen transfixed whenever I put them on.

I kind of have an aversion to a lot of music that’s made for kids, so I’m always looking for music he likes, but that I can listen to without wanting to jump off a cliff. We listen to a lot of bluegrass together – he really loves Gillian Welch, but what really made my life easier was when I ended up making a bunch of playlists for Atti that are made up of normal adult music, that also happens to be appropriate for him. He’s got a Beatles playlist, an Elvis playlist, a Motown playlist (every kid should know Marvin Gaye’s Pride and Joy), but my favorite is the playlist I put together of lullabies.

Lullaby – Dixie Chicks
Close to You – the Carpenters
Danny’s Song – Loggins and Messina
Alright for Now – Tom Petty and the Heartbreakers (closest version I could find)
Like a Star – Corrine Bailey Rae
Morning Has Broken – Cat Williams
Shower the People – James Taylor
I’ll Take Care of You – Dixie Chicks (the video to this one is hilarious, but the music is what I was looking for)
Somewhere Over the Rainbow – Israel Kamakawiwo’ole
You’ve Got a Friend – James Taylor and Carole King
To Make You Feel My Love – Bob Dylan (this is a cover by Adele – who I love – but I also really love Dylan’s original version on Time Out of Mind)
New Soul – Yael Naim
The One Who Knows – Dar Williams

That last song is OUR song. That’s the one I sang to Atti every day in the hospital. That’s the one I whisper to him when he’s at his most distressed. That’s the one that I can never get through without welling up. Gosh it’s beautiful.

Do you guys have any good recommendations?