Prayers please!

Ellie's mom and dad have decided to make a huge mess this Christmas break and let Ellie really "play" with her food.  Believe it or not some research out of Europe states that this is the best way to get kids to eat.  We've tried it some before, but as you can see below...we've taken it to a new level.  These were the first few seconds of our session!  Pray it works - pray she starts eating enough to wean her tube feedings soon!

Thanks friends!

Merry Christmas!

Greetings Holey Ellie friends!

Merry Christmas from Ellie and all of us!  I thought I would share a few pictures from Ellie's world.  With her being in the "touchy, grabby" stage, we had to get creative with our tree this year.  Having limited options we decided to not get a real tree (a first for us) and use some small artificial trees we inherited.

With children you must sometimes find new and different ways to go about everyday things.  So thanks to Ellie we constructed what I think is a lovely little "Christmas corner" in the house.

Here is Ellie viewing it from the floor, well out of her reach :).

And here is a close up of some ornaments. Only two "types" of ornaments made it this year...the "kids" ornaments and the "shoes".  Ellie's Aunt  Louise has sent us lovely shoe ornaments over the years from the Metropolitan Museum of Art in New York!  The kids love them so much.    Aren't they fancy? :)

And a little Christmas cheer made it to the den.  Notice the music channel I put on tv with the roaring fire for ambiance.  But don't notice the four piles of laundry on the left bookshelf waiting to be collected and put away.

Allow me to sneak in a little picture of Ellie's biggest brother Jacob on his first day of altar serving!  What a gift to watch him serve the Lord and after mass put out the three candles of the Advent wreath on Gaudete Sunday.  Ellie was watching from waaaaay far away in the cry room, but she was well pleased to see him up there.

I thought our counter top was a funny picture this week.  From the left: dusting that I've had out for about two weeks now - happy to say that got done today; cute holiday cookie jar with all of us on it; a bag full of cough/pain medicine and a couple new boxes of it; and a container of hot chocolate mix given by a student at Jeff's work - paper cups and all!  What a thoughtful gift!  The house is split on the "milk or water" debate.

A walk around the block to drop off some goodies.  This was the best I could do for a picture of cold temps and a beginning drizzle.

Lots of love to all of you - thank you for continuing to check in on us and for your support!  Keep praying for Ellie to eat in 2015 - I don't have any news about that yet but maybe will early in the year.  God bless and Happy New Year!!!!!

Hello!

Happy December everyone!  All is well in Ellie's world.  Ellie did have a cold that lasted weeks and weeks...she still seems congested but some of the rest of us in the house have it lingering too.  We had a nice Thanksgiving followed by a lovely wedding anniversary to celebrate our marriage!  A quick little smile from Ellie courtesy of her siblings taking pictures of her in Mommy's big "teacher" chair :).

Seasons

It is indeed the season of giving thanks, waiting and rejoicing.

We started the holiday with a party with our Down syndrome group.  It was a small, sweet dinner with fun crafts for the kids.  Our guys got really into making "Oreo turkeys" while Ellie crawled around socializing :).

Talking about seasons reminds me of the "seasons of life".  I've found there are so many seasons in family life in particular and some seem like they will never end.  But they do end.

The hospital just created this wonderful resource for families to follow the care their child is receiving. I signed up to watch where we are with the feeding program admission and was surprised to see this neatly organized listing of all of Ellie's admissions.  I've always "memorized" her dates she was there by things like "the week before Jacob's first communion", or "we came home for one night for Jacob's 8th birthday", or the ever-so-scary "she was breathing rappidly at Fudrucker's for Labor Day and we knew we had to go back in" and lastly, "we got to leave the hospital on Mardi Gras the day before Lent began".  But now the actual dates are all laid out for us to see with our eyes, not just our minds.

Looking at it reminds me of some kind of flight log, like trips we took.  Arriving to and departing from this foreign country we'd never even known before.  Our stays were six nights, 15 nights, 21 nights and three nights.  Oh, and one unforgettable night in the ER that I remember as "three days after we moved into our new house".

There was so much that happened during these dates that are listed in black and white on a computer screen.  They look like a bunch of numbers but hold behind them the sacred events that started this blog in the first place (first post was September 12th!).

On another page you see the list of services your child has received.  When I got to this page I was suddenly reminded of the September 6th admission where she was looking so serious, we got assigned this special team of people (the third service down):

This wonderful team of people we were assigned that day is meant to provide that extra layer of support for the family.  They were three amazing individuals and would always ask things like "how did the boys do in the golf tournament this weekend?" and "how is school with the grandparents going?"  But when we were told we were getting a group called "palliative care" assigned to us, I took off my shoes and climbed over the rail into her crib and practically laid on top of her.  Excuse me while I fetch myself a tissue.  This same group of three folks stopped by during her February heart surgery admission to celebrate how well she was doing and we said goodbye.  

I don't think I'll ever forget some of the details of Ellie's days in the hospital, but it's neat to see it documented like this.  What a season that was.  It did indeed end.  Now it is a new season.  A season of Ellie starting to walk, hopefully starting to eat soon, and of her trading in her hospital gown for adorable Scottish Terriers.

Let us find ways to be thankful during all of life's seasons.

Winter wear

Since half of our household is male, we are used to the request to throw a football around outside before dinner,  In the dark.  In 42 degree weather.  

Ellie then grabbed a scarf and a houseshoe from the pile on the floor and said:

"Let me out there, coach."

She watched with excitement for a very long time!!!

Then she took a hot bath and realized how good it can be to be a sports fan watching from indoors!  Go Sounders!!!!!

Halloween!

Happy lovely month of November!

I'll start by sharing that Ellie's swallow test went GRRRRREAT!  She swallowed 5 good times with three different cups each so we got lots of good data on the x-ray!  It is a video study so we watched her little skeleton and this white thick liquid mixed in with her water (called barium) shoots down her throat like flashes of light!!  Just in time for Halloween!!!!  Sorry, I don't have a picture of that for you :).

Anyway, I found one lady in town that was familiar with the test and had done them on children before.  (we wanted to save ourselves a trip to Atlanta)   She was a wonderful, knowledgeable person and the whole expereince was fantastic.  The kids had to come with me and starting from the check-in all the way to the waiting area outside radiation, staff was giving them candy and even set them up in front of a t.v. with PBS on just for them!  Ellie got a teddy bear for being a patient and the guy gave Julia one too!  God was really with us and the whole thing was smooth.  Everyone in the room was celebrating and cheering with each swallow!  So now she's all clear to receive any and all therapy she needs to eat/drink effeciently!  The timing/place is up to God - we've done all the work we can do!

On to a fun night trick-or-treating!

Here we have: A Waffle House server, an astronaut, Ellie in a cute shirt and a Rainbow!

Ellie didn't have a costume per se, but her Mommy was dressed as her heart surgeon!  Ellie was happy when I told her the surgery was complete and she was all better!!!

Back to the house in time to hand out candy!  The kids enjoyed seeing people come to the door!  I was in the middle of getting Ellie in the bath when she crawled away from me to see the action! 

Looking at the candy we were handing out! 

We'll see if we can get Ellie to practice swallowing any of this candy.  We may just have to do it for her ourselves.  The things we do for love of our girl.

Appointments!

Our girl has been busy this week!  Heart check-up here, trip to Atlanta there...and then she's got a swallow study by x-ray and Halloween coming up later this week - where does she find the time?!

Here she is at our local heart clinic getting an ultrasound - she still gets two a year for now.  Great news - she looked great!  The thing that's supposed to happen after heart surgery is happening!

Ellie's happy about that news!

Getting ready to get hooked up to wires!!!

Waiting between tests, no need to get fully dressed again.  Just her little shawl will do :).  (historical note which may need correcting/editing: Shawl made by the original Eleanor's mother?)

 

 But the wait was a bit long so I let her down on the floor - my thought process is that we were the first appointment of the day.  How dirty could the floor be???

"Excuse me Doc, you comin'?"

 We played honk-Mommy's-nose for a minute when the wait got a little long.

Then her big test where she looked super!

Next up, a trip to Atlanta for a long-awaited visit to a special feeding clinic at the hospital.

Our appointment was early morning so this happened one exit before where we had to get off!

Ellie did great in the car!

Here we are at the visit - she showed them how she could put food in her mouth but not swallow it very well...then she showed them all her smiley faces! :)

By the time we left, Ellie was OUT!

She slept about halfway and was very happy to be home!

Both the feeding clinic and the parents are reviewing information as to whether this place could help Ellie and how/when that will all work out!

Grey Sweats

 The post is courtesy of Jacob who saw a photo opportunity and grabbed the camera!  I stole some sunshine with Ellie on the floor and Jacob said "you look like twins"!  The weather is indeed shifting so here we are soaking up some sun in our sweats together.

Hospital Facebook

Ellie is on the hospital's Facebook page!

Take a look, Like it, post, share, do whatever it is that you facebookers do!  I had to post a comment under an alias since I don't actually have a Facebook account!  But do give the hospital site some press and attention!

Click here to go to the Facebook link.

Birthday and Haircuts!

A surprise post mid-week!  As Ellie's agent, I could not wait a whole week to release her new haircut!

There is a precious barber shop here in town that offers free haircuts to kids on their birthday (a fact I discovered when dashing home from a 2-week hospital admission for Jacob's birthday in 2012).  So today we went for a haircut for Ms. Julia - 5 years old today!  The people there were soooo nice, they cut all the kids hair for free!!!!  We arm wrestled about a generous tip (I won) and they kids all came away looking so good!

Without further hesitation - here is Eleanor Louise sporting her bob:

"Here's the side."

"Here's the back."

"I think it makes me look 2 months younger."

"Hey, it's Julia's birthday!"

The photo came out blury but you can see all the haircuts and all the smiles!

Julia got a cute shirt that said "Best Sis". When we told her what it said she said "I do have the best sister, Ellie."

Julia's favorite stuffed animal - a cow named "Moo Jersey" from their Aunt Louise of The Garden State.  Moo Jersey got a quilt for a present for Julia's birthday. 

Happy Birthday Julia and Moo Jersey!!!