Trip!

To celebrate Ellie's freedom from oxygen, we took her on a little trip!

I love how little space a baby's stuff takes up in a suitcase :).

 On our voyage we of course had yogurt.

 The six of us feeling "almost normal" getting to go to an amusement park!

Ellie and I on a "lazy river" which was extremely symbolic of what we'd been through this past year and a half!  Our life raft had been on a turbulent course with fast speeds and unexpected drops.  This trip we were cruising along lazily indeed!

  Ellie and I trying to stay cool in the shade.

 Now indoors to an aquarium.

 

The rare infantem dormiens (sleeping baby) species found only in some parts of southern Georgia. 

 

 The kids had a lot to see!

 The little Tennessee Volunteer enjoyed herself very much!

 

 

Back home she caught up on some sleep from all the excitement of her big vacation. 

We're squeezing out every drop of summer left!

Kiss

Anybody want a yogurt kiss?  :)

Ellie rolling around with her doll and her hole in her pajama toe for her oxygen probe at night.

That's what we're up to these days...rolling around in holey pajamas and eating yogurt!

Announcing....

Hello Ellie friends!

We have something HUGE to share!  There are three things we're trying to patiently wait for with regards to Ellie's health. One is that she would no longer need oxygen at night.  Two is the weaning of the medicines she's one.  And three is of course learning to eat orally.

SO...one happened!  I'll dangle it until below this picture so you and Ellie can say "I wonder what it is?!"

Ellie no longer needs oxygen at night!!!  This is huge, wonderful news for our girl!  Thanks to some shenanigans she was getting into pulling her tubing out way too often, her doctors agreed to let us do a trial sleep study here at the house.  Her numbers were really good so she is freeeeeeeeee!!!

We still have to keep her little toe plugged up to a machine to measure how she's doing but she's so much happier without something stuck in her nose all night!

We celebrated the occasion by giving her a tortilla chip!!!

She loved licking it!  Yes, we basically gave our baby salt to eat.

She licked two chips until there was no more salt!  Hey, we'll take whatever!  Just like the oxygen, it will one day happen!

Check up

Ellie had a "mid-way" check up today at the heart doctor before her big September check up back in Atlanta.  She looks great!  The numbers all look the same (good news) and she's breathing and acting just super.  A positive visit - Praise God!  Now we'll wait and see if any medications can be changed between now and September.  Then at that visit, maybe she'll look so good we'll come off oxygen at night!

Video

While I was typing the last post, Xavier asked if he could record Ellie laughing.  I had the thought of trying to make it a short one and post it - and I do believe it worked!  

So you get it all folks...Wii, pizza and all!

Enjoy!!!!!

Laughter

Ellie laughs!!!!  Alot, alot, alot of laughs!  All you have to do is be silly and even laugh some yourself and you get a happy chuckling little Ellie!  I would love to share a picture of it with you, but our camera has no batteries due to the fact that the Wii remotes are currently holding our last ones. Priorities here folks.

I can share however...

"I'll take just a tad more of that yogurt."

Ellie loves sitting up with the support of her Daddy behind her to catch her 

when she falls. 

Xavier got a hold of the camera and got a picture of Ellie and 

himself.

Hello

Little Miss with her flower.

 

 A patriotic Ellie!

 A family of patriots!

 

 Patriot siblings.

 And the end of a fun day...Ellie in the position of our national bird.

 Ellie getting comfortable in her high chair this morning.  Still no real progress - however, she did mouth a cracker all through dinner tonight!  Not a crumb went missing from it, but it was soggy wet on the end when she was done - baby step!

 Julia and Ellie saying goodnight.  I call this a "double wiener hot dog".

Nursing and nursing

We've had a nurse in our house since August 2012 - almost one year!  And as we just learned last week, it seems that one year will be about exactly the duration of our nursing benefit through our insurance.

Ellie will get alot of hours in July to kind of make sure she's ok before we're discharged from the agency, then it's weaned to about half in August and then...no more after 8/31.  Strange to think about!  Even though she's still a handful with her eating and at times a simple cold makes us worry much more than we would with our typical children, the insurance has decided her health is stable enough that her tired, exhausted, bone-weary, frazzled, worn-down, spent, extremely capable parents can care for her.

Speaking of running out of resources...another agency, this one called Mother Nature, has decided Ellie's days of nature's perfect food are quite limited.  Biology has kicked in and after almost 15 months of being Ellie's sole provider of  food, I am only able to provide about one fourth of what she needs daily.

I took the number of days she is old and multiplied it by milliliters she's needed every single day and got the number 325,000. That is hard to understand so I then turned it into ounces and got 10,800.  I remember back in the day of overproducing and sometimes even having to leave hundreds and hundreds of ounces at the hospital, I was sure in the end I was going to reach 10,000 pumped ounces of milk.  Some airplanes fly at this height of feet so I like to think Ellie and I have been flying high for the past 15 months together fueled by love...and lots and lots of milk.

Cousins!

A big week for our family!

First, Ellie started feeling better right after I posted the last update.  Her fever broke and her peaceful mood came back :).

Perfect timing for a visit from our California family!  Little 5 month old John Paul, Ellie's brother-from-another-mother, and Ellie were fast friends!

They spent some time on the floor feeding each other a plastic burrito.

Then they decided they better do some Pilates after eating a bit too much. 

"I love you cousin John Paul!" 

Lots of golfers in our group! 

 And a sleeping one too!

We are so glad Ellie and John Paul got to meet and we all got in some wonderful family time!  This summer has been very blessed thus far!