Therapy

Ellie has started to take some steps and walk a little!  She is so cute when she does it...her max is about 8 steps then she falls and just laughs!!

We've been taking her to this new place for physical therapy to encourage her to walk. It's a really great place, not far from home.

There is a guy and a girl that work with her together.  The girl uses the concept of a musical beat on the bottom of a cup to get her to come to her.  There is some controversy in the literature about the "cup banging" method but I think you will see here, it does seem to work.  The guy has this funny catch phrase that Ellie seems to respond to.  She associates her successful walk with the reward of hearing this little mantra he does.  Again, probably not the kind of thing you see in most centers - but effective.

I took the camera this week and thought you might like to see it!

http://safeshare.tv/w/VlvqdISyvB

Oh and there is another therapist at this place, but during this session he was working at the front desk on what looked like long division.

On eating

It's been two weeks since the last update and I'm more than thrilled to say...Ellie is now eating her whole bowl of oatmeal, and then some!

Right after the last update, she took to eating again.  She opened her mouth, didn't push our hands hands away and no spitting out the food.  Then, with trepidation we headed to a family reunion where we packed all her formula and tube supplies not knowing what to expect.  The outcome - she ate her way through the state of South Carolina!  She ate whatever we put in front of her including her first slice of pizza!  Bite by bite she chewed and swallowed little cut up pieces!  Family was all on hand to celebrate and send food her way!

Ellie's Aunt Louise was perhaps most excited about her eating progress.  I think Ellie's success comes in large part to her aunt's good prayers all the time.

Ellie hangin' with her cousin John Paul.  

Here Ellie is looking for some attention from the Bishop of Charleston after mass.

 Ellie and Daddy enjoying some South Carolina sunshine.

Back at home it was chili night.  In the past she spit out the beans. It was a rough start as she spit out the beans once again.  So Daddy had the idea to mash it up with our avocado masher and here's how it looked. (note the little Ellie finger in the frame)

After multiple re-microwavings, she ate it all up!  Phew!  She's in the chili cult we've got going here!
We've checked in with her pediatrician and he's given us guidelines to weight and suggestions to maximize calories.  For example tonight we have a fresh loaf of wheat bread with oats and honey and butter in the dough...but more butter will go on top when it's hot out of the machine!  In case she ends up wanting a bite of mine, I'll add extra butter to my piece. See how that goes in my head?  Also we're really trying to push water since we've cut her tube feedings.  She's a slow drinker but she is indeed drinking enough to have good "output".  That's pee diapers my friends.

Some meals go better than others but we really do feel like a different family now.  We're truly a table of 6!  Occasionally I wear some of her food during a hard session, but what parent hasn't cleaned spaghetti off a wall?  It's all going great - look how happy she is...

Tune in next time for Ellie in a New England Patriots outfit to help her Aunt Colleen cheer on the team!  We'll see what kind of stuff we can get Ellie to eat during our Super Bowl party!  It may be time for her first hotdog.

Eating

This week, Ellie ate a little food which is a huge improvement from when she was sick!  We're so happy she's feeling alot better and is willing to take some bites of a few foods!  We're still giving her the feedings through her tube and if one feeding session goes poorly we, I try not to think too much of it...we're basically starting from the beginning again.

Here is a great session we had yesterday with the thing we have most success with.  It's instant oatmeal out of the packages and she's been eating about 10 bites!  It's amazing to see it go in her mouth and right down her throat!  After that point though, she begins spitting bites out or turning her head away.  I want to say she's full?  But we're not that confident that we know anything like that yet or why she's stopping.  We all just enjoy seeing her do it!

First we have the "mine and hers" bowls.  Hers is on the right and she cleared out one whole side of the bowl!

Here she is showing me where the food goes..."right here Mommy".

And a beautiful site...an open mouth!

Even more beautiful...a closed mouth!

And most beautiful of all...an empty mouth with the food going down instead of out!  Julia not passing up an opportunity to cheese for the camera.

This week's success was started with a little song I sang for her and for some reason I decided to include a drumbeat of banging on the kitchen table.  Now every time I get to the table with the food, she starts pounding the table with her hands and smiling waiting for me to sing!  You could say our manners are far from restaurant-ready...but ask us if we care! :)

A few more holiday photos below of our trip to see family and some fun we had there.  Thanks for the continued prayers she keeps wanting eat and that she'll begin eating variety of things!

2015

Happy New Year Holey Ellie friends!

We had a nice Christmas, we hope you all did too!

The most important update is that Ellie did take a few bites of food and we're pretty sure she swallowed it - but then she got that (same) nasty cold again and has refused to eat for the past week.  We're just giving her time and trying every day like we used to.  She's happy crawling around getting into all the new toys and games, that's for sure!

Here are some pictures from our holiday.

Ellie missed the 8:30 p.m. start to the New Year's party.  And what a party it was!!!

Thank you for your ongoing prayers that Ellie will be open to eating!