Long Day

The following picture means lots of things.

1. Your child's medicine port from her feeding tube popped open in the middle of the night, spilling appx. 8 oz of milk in her bed.
2. Your child is an excellent sleeper who does not seemed to be bothered by being soaked.
3. It is going to be a busy laundry day.

I think Ellie knows something we don't.  Since this happens more often than we'd like (even happened once in the hospital), I think Ellie is on to something.  Maybe this is her beauty secret - milk baths.  It seems to be working!

After a real bath (taking along a portable oxygen tank), the nurse cleaned her entire crib and gave her a change of clothes - good as new.

Nothing like golf in Hawaii time zone to get your kids bathed, fed, prayer time and on the couch together.  Xavier posed for this picture with Ellie then... 

said he wanted to know what it was like to be a a baby and look at Mommy. 

 Ellie then played with his ear - he hardly noticed.

And Jacob wanted to hold her before bed time.

We had a fire drill at the house today with firemen that came and taught us some things about escaping and storing Ellie's oxygen tanks. Long day indeed! 

John Paul

What?  My cousin John Paul was born today?

 I'll stop playing with my toes for a moment to send him

a wave hello!

Ellie's photo was taken to the hospital for his birth and he joined this world on a Tuesday morning, just like Ellie.  I hope the two of them get to meet one day soon!

Go Irish!

Some years ago, a fine lady named Eleanor had a son who went on to go to the University of Notre Dame and then he too had a son who went to Notre Dame.

Today, our Eleanor is ready to cheer for the Irish!

Note: it is Ellie's Papa and her Uncle Ken who are the ND alums and Uncle Ken is in fact in Miami probably getting ready to find his seat in the stadium!

Break Over

One last night of the three of us staying up way too late enjoying each other's company.

Reality set in when I had Jeff bring me a pile of books to organize school for the week.  Still didn't stop us from finding something funny on t.v.

Epiphany

Today I had an Epiphany to try to investigate the photo problem and found a solution!

So, hello from Ellie!

Ellie heard we had elk for dinner so she decided to try some of her reindeer. 

Don't you know after you've eaten and played all you really want to do is take a nap?  I love how the blanket was in the perfect spot for a pillow.  I also love how it took four children for us to have a child who can do cute things like this regarding sleep. 

Cold January days have been filled with lots of couch time.

Photos

Greetings everyone - and Merry Christmas (still have two more days left!). 

For some reason this site is having trouble uploading photos - of which I have plenty to share.  Oh well - maybe it will work again soon.

Ellie is doing fine and seems to be totally free from her cold!  Playing and happy and napping like she usually does when she feels well.

Hopefully the technological glitch will be fixed soon and you can see her sweet face.

God bless all of you and a big hug from Ellie.

New Year

Happy 2013 from Ellie!

Jeff and Ellie ended the year doing what they do best. 

 

When he put her down I put a blanket on her and then came back to find her like this. I don't think there's much to worry about though when your child has air literally piped through her nose 24/7.

 

This year a dear family member told me of a New Year's tradition from Cuba that I could not resist trying.  It sounded like the perfect way to end 2012!  They fill a bucket with water and toss it out their door as a symbol of putting the past behind them. 

 

Although our life is a continuum of days that form who we are on this journey to be with God forever in heaven, it's o.k. to say "we did it, we survived" during something hard.  I even had dirty mop water to do it with!  It was very theraputic to envision the bucket being full of all the tears we cried, including Ellie's tears through all her procedures and rough times.

 

So, out the water went!

 

Then it hit Xavier the year was over. A child doesn't quite understand that today is really yesterday's tomorrow.  Simple, huh?  :)

 

 

But what a child does understand is when their mom says they can eat an entire candy bar for dessert... 

 

there is always a reason to celebrate this life. 

Happy Feet

Jacob loved getting the chance to hold Ellie this morning while I sort of stayed close by.  

She enjoyed playing with his face.

Happy girl having some fun in her seat today. 

How cute is that?

Bath

A morning bath for Ellie with a little cleaning out of her nose and wiping her face down really well.  She enjoyed it.  Julia is becoming quite the shutterbug.

Family

The sun is rising and shining on the back of the Christmas tree this morning - what a lovely sight.  It's just me home with the girls due to some late sleeping by Julia.  Jeff will soon be on his way home with communion from mass.  Ellie is still sleeping - I love it when she sleeps late in the morning.  It usually means she feels good.  She's almost all clear with a little lingering but is happy and relaxed for the most part.

May you spend today celebrating The Holy Family as well as your own.

Less stuffy

Ellie is clearing up!  She woke up pretty rough this morning - she was crying when the nurse was taking off the tape on her face and she blew blood out of her nose all over the place.  Laundry has gone to a new level around here these days!  Anyway, we gave her some treatment and it really seemed to help.

By the afternoon she was very clear and was happy to just sit on the couch and look around.  And play with her feet.

Christmas

"On the third day of Christmas, my true love gave to me...a freezer full of elk meat."

Isn't that nice?  A friend gave us some elk (aka deer) and even gave us a batch of chili made with it.  Very tasty!  It was our first venison meal ever.  Luckily no one made the Rudolph connection.

Ellie got alot of very sweet, thoughtful gifts for Christmas.  Along with some adorable outfits and fun toys to shake, she was given some other meaningful gifts I wanted to share.

First, this is a collection of name cards that got taped to Ellie's crib when she was admitted to the hospital...made with love by the nurses.  Framed with the name cards is the playing card we posted a while back that was on the ceiling of the room she was in.  And of course the smile during that visit.  We now believe it was the heavy influence of pain meds that allowed her to smile like that on that day.

Next is a very touching gift from a co-worker of Jeff's brother.  This man offered us a piece of his heart that we will forever treasure.  He was the care giver of his dear sister Libby.  Libby had Down syndrome and passed from this world not too long ago.  She lived a full life well into adulthood.  Her brother heard about Ellie and took this wall hanging from his sister's belongings and gave it to us.  Dear Libby, please watch over Ellie and offer her comfort and relief from suffering as she faces some of the challenges I know you faced in your life.  I know you had a generous heart and would be happy to see it in little Ellie's room. 

You are still making the world special.

And finally, Julia was so sweet and filled Ellie's stocking with some of the bottles in which I store milk.  Courtesy of the children's hospital in Atlanta, I have a nice supply of these little bottles which start out looking like this:

 Then end up like this in the fridge:

And then finally either mom or the nurse makes a 24-hour batch in this and the bottles get washed and the cycle starts again.

Thank you Our Lady of La Leche - pray for us.

Stuffy Ellie

Holey Ellie is now Stuffy Ellie.  Our girl is so congested from what appears to be a cold.  We have a regimen of giving her breathing mask treatment, beating on her back then using a suction machine (fun times for her) to clear her out.  She's pretty fussy through it all so we're spending lots of time holding her. The good news is her numbers are all excellent so she's really holding her own.  Just wish she felt better.  We're giving her some meds to make her more comfortable and just trying to let her rest. 

She did play on the floor for a bit today long enough to enjoy some of her new toys.  You can see her little glassy eyes are part of her cold.  Poor girl, we're trying to help you out!

Meanwhile, Santa and our families all loaded the other kids up with enough to keep us very busy and happy around here for quite some time.  And the heat works great in our new home to keep our girl warm - a luxury in a world where people go without heat.

Christmas Eve

Ellie slept through most of the Christmas festivities tonight.  What a blessing to be together with family in our wonderful home.

Praying for all children to feel the presence of Christ and his love for all mankind tomorrow morning.  Santa will be eating a mold of himself made from white chocolate at our house tonight. 

Family and Christmas

Ellie awake for some family time.

Ellie (and maybe some of the other people on this couch) asleep off and on through the weekend celebrations.

Merry Christmas from all of us as we celebrate the birth of our Lord Jesus.

May we always celebrate His birth as well as the existence of every human being - born and unborn.

More grins

Ellie is flashing so many smiles at us we're keeping a log!  Today Xavier reports "22" as of 15:45 EST.  :)

In the "why not" category I decided to stop school this morning for a photo shoot and this is what we got.  Good stuff.  The outakes are lots of fun.  When you get to the bottom you'll see what we like to call in our family the "money shot".

 

Rocks

Today I'm happy to say things are a bit more relaxed.  It's mostly due to a new interest the kids have - pet rocks.  They brought rocks inside yesterday during the craziness and named them and started playing with them late in the day.  They have not stopped playing with them since.  I'm humbled that something I was tempted to say no to has turned into a very fun game for them.  Sometimes when you're home all day you really do have to pick your battles.  Ellie is comfortable and resting.  We even had a nice call from her surgeon in Atlanta to check on her. 

Jesus, you are our true Rock and we place our trust in YOU!

Plans and stopping plans

I woke up this morning with big plans.  Getting excited about the coming week and wanted to get ahead in schoolwork and chores so we can take a nice long break for Christmas. 

When the phone rings at 7:20 a.m. and it's the nurse agency telling you your nurse was up all night throwing up, you should just go ahead and get a stack of DVDs ready for the day.  But, my plans!!  We did get a nurse around 9:00 to fill in but sprinkled in the morning was non-stop phone ringing, doorbell ringing, neighbor visit, laundry pile up, and unauthorized activities such as tent building and "collections" being brought in from outdoors.  By mid-morning I decided to just sit with my girl and see if I could get her to do what she started doing yesterday...smiling.

On her 8 month birthday, Ellie pretty much started flashing us smiles on demand. I didn't think I could capture it on camera but this morning I tried and was successful - even if a hand got in the way.  Maybe she was waving too :).  She's also in her new little seat which works out very well for her for about 30 min. at a time - she gets tired and fusses after that but she sure seems to enjoy it. 

Bopping along

We've brought back the Boppy into Ellie's life!  That thing is 8 years old and may leave our family in a biohazard bag after all its been through!

But here she is getting some help getting her hands to some toys.  She's doing great this week - we're keeping her comfortable.

Santa has 11 more days to bring her some better working lungs :).

The girl went outside!

December 9th was circled on our calendar for months.  It was our first time in this subdivision that we experienced the annual tradition of lighting candles in bags at sunset.  The bags lined the street of the entire neighborhood and it was really a gorgeous sight.  Ellie got her stroller loaded with the essentials and we took her about 10 houses down to a court that served cookies and hot cider.  The older kids got to visit with some of their friends from church and we felt "normal" for that hour or so.  Well, other than the fact that Jeff reminded me I should not stand too close to the fire they had going.  Oxygen makes the fire bigger - think of what happens when you blow on a fire.  The flames get bigger.  We didn't want our first year to be that memorable.

I think Ellie knew there were cookies over there.