Tuesday, October 8, 2013

16 months old!

Bonnie turned 16 months old yesterday!  Since my last update, she's been a busy girl.  She started daycare in August (and we said goodbye to our fabulous nanny Julie), which has been great for her.  She is now a proficient walker--and runner...and climber--so she was discharged from physical therapy a few weeks ago.  She started speech therapy two-ish months ago, and has made some really good progress there.  She is understanding a lot of what is said to her, and she's starting to say a few words as well.  Her main communication right now is sign language, and she's so flippin cute when she signs.  She doesn't know a ton of signs, but the ones she does know revolve around eating.  That's right! Eating!  My non-eater is eating!  She's been in feeding therapy since she was about four months old, and it all finally started to click about three months ago.  Right now she gets about 70% of her calories through her g tube, but we are working closely with her nutritionist and are actively weaning her from the tube.  The other morning I went to get her out of bed, and the first thing she did was the sign for "eat."  So so proud of my baby!
Bonnie hearts you.

Poor Zander had to wear a cone for awhile.  He was further tormented by the baby.

Enjoying a nice breeze. Or trying to fly.

Unlocked the cage all by herself, climbed in, and had a chat with the dog.

Playing in the water!

This moment *right here* is when Bonnie caught on to the whole food thing.  She's munching on bacon at Cracker Barrel.

Bacon day.

Sweetness with Dado.

Eating crackers!

Eating Cheerios!

She was having trouble getting around on her little trike, so big brother helped.

And these are from today. She was helping me unload the dishwasher...and eating :)

Thursday, June 6, 2013

To my baby...

To my baby, on the eve of her first birthday.

Dear Bonnie,

One year ago tonight, I rocked your brother to sleep (not easy, by the way, being nine months pregnant).  My prayer as I rocked was that, in a year, you would be the one I would rock to sleep.  And tonight you were.  Oh, how grateful I am for that.

The day you were born, the doctor described you as "feisty."  That was the best thing anyone could have said, because it meant you were a fighter.  What a fight you were in for, but you did it, baby girl.  You won.

I remember vividly the day I knew for sure you were going to come home.  It was July 5, 2012, the day of your repair surgery.  Your dad and I were sitting in the waiting room, waiting to see you after your surgery.  One of the neonatologists came in and we had a ten minute conversation about what your scar would look like when you were older.  It was the first time that one of your doctors had spoken with such certainty that there would *be* a future.

I finally got to hold you when you were a month old, and what an amazing day that was.  Your nurses will tell you that I made up for lost time and held you for hours on end every single day until you finally came home.

Your big brother Henry is so very proud of you.  When I take you with me to pick him up from school, he'll tell anyone who's around, "Hey! That's my sister!", usually followed by a kiss on your head or your foot or whatever's available. Dado and I are proud of you too.  We love that mischievous laugh and twinkle in your eye when we catch you flinging tupperware from the cabinet or trying to put the dog's tail in your mouth.  We very affectionately call you "the villain" because of the normal-baby-milestone-reaching havoc that you wreak.  Now that you're learning to walk, well, bring on the destruction!

My precious baby, you are such a gift.  I pray that one day you will know the great God who brought you through those early months and who still holds you in His hand.  I pray that you will one day know just how many people have been cheering you on from the very beginning.  I pray that one day you can be proud of your scars--I know I am.

Thank you for bringing so much joy to our family.  Thank you for giving me a heart more sensitive to people's suffering.  Thank you for staying with us.  I thank God for every breath you take.

All my love,

P.S. Here are some pictures from your last bath as an 11 month old :)

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.