Thank you, God!

Thank you God for a fireplace in our new house that keeps us nice and toasty!

Ellie got to hold a marker as a distraction while we toasted marshmallows!  But Xavier being the good big brother that he is, gave Ellie a little taste of his roasted marshmallow!  He managed to give her a drop on her cheek - Ellie fought hard to get that tongue all the way over there to taste it!!!

Thank you God for Ellie's Aunt Allison sending us some coupons for some free yogurt!  That made Ellie happy to try yogurt again - it has been a while!

 "Not bad, I like this stuff!"

Thank you God for a Thanksgiving this year where we can GO and take Ellie out of the house!

"Where we goin' Ma?" 

"Let me just get this little spot right here on your lip Ellie." 

"We gonna have some turkey today?  I could go for some turkey!" 

"Yay, turkey - what are we waiting for?!"

Boring Details

I love that all I have to report to you is boring details of our life!

There was a mix up at the supply company about why we are out of syrienges with which to feed Ellie...turns out they typed in "10" in stead of "30" in our last shipment.

We took our time this morning with some rice cereal sweetened with orange juice - she tolerated it in her mouth until it all got watery and dribbled out.

Ellie got her nails trimmed this morning then got a nice hand massage with some Vaseline for her little dry hands.  I love her expression with the one eye closing - "that hits the spot, Mom"!!!

Now back to our boring day!

Today

 A little smile at school time.

 We played checkers and Ellie could not WAIT to get her hands on the board!  "No more playing, ya'll - it's my turn!"

 The cutest little picture of Ellie hanging on to me as I changed her clothes.

Helper

I decided to outsource Ellie's feed last night.  Brother Xavier handled some mushed up beans while enjoying a Halloween lollipop. He did a great job!

 "Hey, where did he go?"

Monday

On the menu Monday:

A few pieces of banana made it down, I believe.

She's a cute little customer at the table isn't she? 

She then made it into the school room and is a cute little student - photo courtesy of Jacob.

 Then back in the kitchen for some soup.  She really did seem to keep a lot of it in her mouth!

Looking at that picture of the school table reminds me - I've been fortunate enough to be in contact with the CEO of the hospital in Atlanta about our experience there.  I shared some details of what made our time there as "good as it gets" as far as these things go.  She wrote me back a letter thanking me and had listed multiple people she forwarded it to.  I was sharing it with the kids and noticed it was in the picture so I thought I'd explain.  When writing the original letter, it was neat to walk back through some of our moments there during admissions and look at it from so far away.  By neat I mean awesome...the far away part :).

Food

Hello friends!

We've missed updating you on how Ellie's doing!

There is one reason, and one reason only we went "dark".  :)

We've been busy trying to get Ellie to EAT!!!

It has not been easy and has even caused one of us to wonder "if she'll ever eat".  But the other one of us calmly said "she's not going to have that tube forever".

So three times a day, we feed her food.  Let me explain "feed".  We mash up a banana.  We puree tuna salad.  We put peanut butter on our fingers.  Then we try to get the spoon/finger in the mouth and have some success!!  Much more success than we used to!  And I'm happy to report, she doesn't gag nearly as much as she used to!  AND hardly ever throws up!

All that good news is indeed good and we must focus on that. What I'm trying not to focus on at the moment is her uncanny ability to PUSH food out of her mouth.  All bites, all food, all the time.

Here is what tuna fish looks like after sitting in her mouth a few minutes and she decided she'd had enough fun playing with it.

I hope and pray some is getting down.  What we decided to do was pull back a bit on the liquid tube feeding for two reasons.  One, to prevent her from throwing up if she gagged on the feeding trial.  Two is to see if she could gain weight at a steady pace with hopefully the few extra calories she's accidentally swallowing?

Here she is asking me - "You really gonna try to give me some more, I thought I told you already, I'm done."

 Now she's REEEEEAAALLLY done.

"I so sorry Mommy, I didn't mean to behave that way. I'll try again later, you just don't give up on me O.K.?"

 O.K. Ellie girl - we're here for you.  Tonight we gonna try some mushed up chili!

Halloween

A clown, a mom :), a pumpkin, Santa Claus, Tiger Woods and Mother Teresa were seen collecting candy around our neighborhood Halloween night.

 

Ellie Mom and Dad got quite a bit in her basket.