Wednesday, April 24, 2013

Long time no see.

Bonnie is ten (and a half!) months old now.  How did that happen?  She's been doing great lately, and making a lot of progress developmentally.  About two weeks ago she figured out how to crawl, much to her delight.  She had been one seriously ticked off baby for about a week and a half prior to that--wanting to move but not being able to.  So she's officially mobile now.  Yay Bonnie!  A week ago she pulled to standing for the first time, which she's also pretty excited about.  I'm so proud of her, because physical development-wise, she seems to be almost on target.  I should also add that she's started physical therapy once a week since my last post, which I think has had a lot to do with her progress.  You wouldn't really think that an hour once a week could do much, but it really does.

She's been babbling a lot in the past month or so.  It's so great to hear that sweet little voice say "mama."  I was kind of worried about her language development because it took her what seemed like a loooong time to get any consonants in her repertoire.  Henry was an early talker, so that made Bonnie seem even more behind to me.  I think now she's starting to catch up, which is a huge relief.  

As far as eating, she's still getting pretty much all her calories via g tube.  Her oral aversion (which was due to being intubated for so long) is pretty much resolved, so she doesn't mind having food in her mouth, and she (usually) doesn't gag anymore.  Her problem seems to be that she just doesn't know what to do with her tongue to get food to the back of her mouth to swallow it.  I'm sure her occupational therapist (who does feeding therapy) would have a more technical explanation.  I do feel like she's making progress though, and I'm just waiting for the lightbulb to turn on.  Any day now.

Speaking of the g tube, I just wanted to document a little of our experience with it.  First, it's a thousand times better than the NG tube she came home with.  Way more convenient and unobtrusive.  One thing that freaks me out, though, is when she gets all tangled up in her tubing at night.  There's really no way to avoid overnight feeds at this point, because she can't handle the volume she needs if it's compressed into just daytime feeds.  (Did that make sense?)  Anyway, her feeding pump runs overnight, and usually she's so zonked out that it's not an issue, but sometimes when I get her in the morning, she's all wrapped up in the tubing.  It's scary.  Another potential issue is what to do when she's hooked up to her pump during the day but wants to crawl (and eventually walk) all over the place.  Am I supposed to just follow her around with with her little pump backpack? No idea. These are the things that keep me up at night. (Not really. I sleep great, thankyouverymuch.)  But seriously, if any CDH mamas have some brilliant ideas for me, I'd love to hear them.

And now I've got four million pictures to share.  These are roughly in chronological order, starting from a couple months ago.  Enjoy :)

Curls!  This was right after a bath, so her hair is extra curly.

Curls from the back.

My cute chubby baby at the zoo.

My sweet Henry riding a bear.  Yeehaw.

Henry and Bonnie

Bonnie Bee. <ba-dum-ching>

Henry giving Bonnie some love.

Bonnie not feeling it.

Bonnie and Jonathan.  This one just makes me smile :)

Can't have dinner without wearing your hand-knit monkey hat.

Just because he's beautiful.

Henry reading to Bonnie. Love this.

Happy girl!

Bonnie looooves her puppy Zander.  More photographic evidence to follow.

Bonnie with a bow!

Bonnie and Grandmama in Tennessee


Yet more hallelujah's.

Hanging out in the exersaucer while Dado cleans out the garage.

Two kids in a tiny chair.

See? Loves the dog.

Poke poke.  (Don't worry folks, he's the world's sweetest dog.)

Check it out!

More Zander love.

Every single day I look at this girl and marvel at how far she's come, and how blessed we are to even have her with us.  Love you, sweet girl.