Tuesday, February 2, 2010


Our heart baby hates food.  The doctors didn't prepare us for that.  She hates touching food.  Sometimes she'll tolerate smelling it.  New textures are icky!  (and all textures are new.  Her favorite texture is the thin, smooth oxygen cord...or any cord, really.) We feed her through a G-tube for now. She loves spoons and cups, but won't touch food.

Seraph loves her new mobility, but still hates eating.  Today we played a game where I put Scooby Snacks (the graham cracker kind) in her hand and then she puts it into my mouth.  I don't think she knew it was food.  She loved the game!  She even put the Snack in her mouth a few times!  Mmmmm, cinnamon! 

After, I thought she might want some water.  So, I cradled her and gave her drops of water from a tiny bottle.  On a whim, I sucked on the bottle loudly to show her.  Then put the bottle to her mouth.  She sucked out water!  No, you don't understand....all babies know how to eat but she just doesn't.  She hasn't sucked on a bottle since before her 2nd heart surgery--at 4 months of age!

We played with the water a bit, and then I switched it out for some (vanilla flavored) formula.  Success!  She drank 4ml of formula, and then another 3ml of formula.  Yay!!  She passed her swallow study months ago, but it never mattered as she wouldn't let anything in her mouth.  (Except the barium.  Boy does she love the taste of barium.  Think bitter.)

It's been so long since we had any progress in the food department.  I'm sooooo excited for her speech therapist's visit (Thursday).

She finally explored far enough across the kitchen to find the toy cupboard!  I've been wondering how long it would take her to find it.  In the past, she's avoided the kitchen because she likes the feel of the carpet much more than the tile.  I think the toys will win out from now on.  It happened after the other kids were in bed.  They're going to be happy for her, too.

Good job, lil girlie :)


Shell said...

Way to go, baby girl!

Paige said...

Very clever. glad you had some success. I admire your patience.

Safire said...

Way to go! How exciting for you and for her. :)

Anonymous said...

She is learning so many things. She looks good and is alert. Today she was watching me move my hands and imitating some of the movements. She seems to have a fascination with Grandpa. Her eyes follow him whenever he is around. Her progress is amazing. She has a good teacher. Gma

The Grasshoppa said...

My kids have been out of school for weeks because of the snow. My autistic son is about ready to split wide open.

He needs severe structure--which I am unable to provide given the 20 month old and all the other kids.

Today I have been in tears..just IN TEARS over his screaming fits and I don't have the energy to think of plan b.

And then I read your blog and I cry because what is screaming when you are just praying that your baby dumplin will try and learn to eat a little.

It makes me feal so ignorant.

I'm in awe of your strenth and wish I could just get it together.

Hugs to you and your sweet little heart baby.


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