Ellie is 2 and Easter is here!

Happy Easter Holey Ellie friends!

Ellie says "I'm doin' so good  now, my second birthday is even better than my first!  No more medicines, no more oxygen!"

"Just having fun with this giraffe thingy with balls that keep spinning around!"

"And Easter mass was so special, except I wish my people would let me crawl around more!"

"I guess I'll hold still and smile real quick for this picture with the girls." :)

Then a birthday and Easter celebration!

 "What's this, a lollipop?"

 "Now that tastes alright!"

  "Time to hunt for eggs?"

A new ball popping game - fun for all four kids!!!! 

 

 

Then a lick of some cake and we call it a day!

Big Week

"Hi Y'all"!!!!

"I'm goin' be 2 this week"!!!!!!

"I'm just so excited about my party!

"Since it's so close to Easter, we're gonna have a big Easter/Ellie celebration"!

Julia and Ellie

Holy Week + Ellie Week = Holey Ellie Week!!

Prayer books

Ellie was so happy today about the addition of a new table in our little prayer corner.  She got a whole shelf of books to have her way with!  Make a mess and learn about Jesus, Ellie!

Cute things in cabinets

In honor of the Annunciation, Ellie's Godparents sent her the cutest little Mary doll!  I couldn't really get a good picture of her holding it, but it's the perfect size for her little hand!  Love it!

A small victory for Ellie this week - she finally convinced her mother to let her play inside a cabinet that had a child lock on it.  She pulls and pulls at the doors daily - so when I unlocked it, our girl had a mission....

"See, I knew it would be the perfect size for me!"

Madness!!!

It's March Madness over here these days...it's in the air in our home! (what's so funny is that I knew of that website because of the statistician in the family who wanted to know all the winners of previous years!)

Anyway, during the days when there are no games to watch, the boys create their own games and elimination brackets using an indoor basketball goal we have.  Instead of colleges, they pretend with family member names.  And as you can see, Ellie finds a way to plop right down in the middle of the action and the boys are used to working around her!  Watch as "Sylvia" loses this round.

3/21

Greetings!

I'm slightly bending the "Sunday post" rule (although I'm sure you're all reading this on Sunday!).  Today is basically "Down syndrome" awareness day.  Can you guess why?  It's a tricky one...

Down syndrome is when a third copy of the 21st chromosome is present.  3rd copy.  21st chromosome.  3/21!  Get it?  As part of awareness, I'll present my own two little "teaching points":

1. I never knew this but it's actually Down syndrome versus what I thought it was - Down's syndrome.  The man's name that discovered it is not possessive.  It used to be possessive but was dropped to emphasize it was not actually he who had the condition.

2. There is something called "People First" language.  This movement is trying to encourage people to not say "Down's kids", "Down's babies" or "Down's families" - it's putting the emphasis on the condition before the person.  You wouldn't say "High Blood Pressure John".  The right way to think and speak about it would be "Ellie is a little girl who happens to have Down syndrome".   

The main question parents (including yours truly) want to know when given this diagnosis is "will we still be happy?" and "will my child be happy?".  Well, it will take me a lifetime to continue to learn the lesson of happiness versus joy but I think this video speaks for itself.  

Creating

It's been a super full week this week thanks to some creating going on over here!

I'll give you a small tease that will be fully revealed (hopefully!) at Easter.

Notice the sewing machine and material...to be continued!

Meanwhile, Ellie got to spend some time outside creating a mess!  She found herself a nice chunk of dried mud in the yard.  I sat there and watched her put it to her mouth and lick it, then rub it on her face!  Ancient Chinese beauty secret she must know.

Apparently Xavier knew the same secret at Ellie's age.

Good morning, Sunshine!

Our den/family room gets morning light thanks to the windows from the sun room.  Last year, Ellie's whole life was in this room.  When I opened the shades in the morning, the bright rays that had just crossed the Atlantic ocean came into our little home and landed on our little one.

This was Ellie last year. Still asleep, the sun beam would touch her bed to help her gently wake up.

Now in 2014, the space where Ellie lived for a little over a year is now occupied by...a basket of laundry. Not quite as precious and urgent as what was there a year ago. To illustrate the non-urgency, you can still find this basket in this spot this morning, days later :).

 Ellie joined us in the den and got some of the rays right on her face.

"Who's that little sunshine in the sunshine?"

"It 's me, Mommy!!"

Lent

Getting our ashes to remind us "remember you are dust and to dust you shall return".

Ellie loooooves to crawl into the bathroom and get in a semi-kneeling position to look in on all the action.  She doesn't even have to get in the bath - she just loves watching the other kids play and splash!

Ellie's day

Wake up, put on cute outfit, get milk. 

 Get to play with real golf balls in the house!

 Get to hold a balloon on a nice walk!

And end it all with a hot bath and a nice cup of hot cocoa.  

May you enjoy small pleasures today as well!

Need a fourth

A shout-out to all you bridge players - Ellie stepped up to be the fourth.  We call this hand "4 hearts".

A lot to celebrate

Ellie asks, "How are things in your world?"

She enjoyed putting some bread on her tongue.

She looks like she might eat it - but she keeps her distance :). 

A few birthdays at the beginning of the year have us celebrating often.  I like this picture with all the kids and Jesus at the center.

Hugging

Here is yet another new trick our pony has learned :).

New trick

Hello friends!

Well, a week away and I have a big new skill to report!

Ellie can now hike a leg up on to the fireplace hearth!!  Here is the little one doing it for the first time...

 ...and then of course she could not get herself down!

 "Ummmm...now what?"

 "Oh, I'll go to my favorite coffee table and see what I can find in these drawers."

 Pay no attention to the fact that our baby is sitting approximately 12 inches from a television.

And she even found time this week to practice her fire fighting skills!  Maybe that's why she likes climbing up on the fireplace.

Blogging

Happy Sunday to everyone!

Well, this week is over...and what a full week it was!  Sunday has indeed been a day of rest!

Speaking of Sundays, I think I will start making Sundays my "update on Ellie" days. I'll post some pictures from the week and how she's doing.  Now that Ellie is doing so much better, I have been brave and added some new things on my plate including broader homeschooling goals and more homemade bread :).  So I will be keeping the blog short and sweet and perhaps slowly begin weaning from this wonderful year and a half of connecting with you in this way.  I appreciate all your prayers the other day with the rock.  By the way I had some warning she was going to go to the bathroom so I put her on the toilet to help bare down and that is why the rock landed in the bowl like that.  Thankfully I kept some gloves on hand from the days with the nurses - phew!  TMI?

So here is the post of the week - Ellie being given "safe toys" to play with after her episode with Mother Nature. The boys piled stuffed animals on her and she actually did sit there for a while and play with them!  We do our best to take good care of the children God has blessed us with.  Maybe for me that means not spending as much time on the computer.  Ellie loves you all so much and just loves the fact that a concerned parishioner approached us yesterday asking if our girl had pooped yet.

It's OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

20 minutes of TLC and the "cling" on the porcelain was music to our ears!

She did cry but it wasn't as bad as I thought and it's all over.  She virtually fell asleep as we were getting her dressed so she's napping peacefully now.

I always felt like taking a nap after I give birth too.

Ellie is fine

Greetings everyone!

It's late!  Long day!  Glad it's over!

I was fortunate to have some good phone calls this afternoon.  First, the pediatrician called to say the mass seems to be at the base of the esophugus and will hopefully continue to move along (and out!).  So he then said a GI doctor wanted to see her tomorrow. I called that office and asked some questions about what would happen at the appointment and before I knew it I had asked so many questions about feeding her, if he'd seen the films, what to watch for, etc. that the nurse said "hold on" and the doctor came on the phone!  He was so nice and said it's past the airway, it looks like a typical scenario he sees all the time and there's  no need to worry - just to wait.  He said we could wait until Monday and if it's still in there we could take another look at where it is by then.

Then, I still had some unanswered questions.  So I worked myself through the phone system of the hospital radiology department and found out which radiologist read her x-ray. I asked to speak to him and amazingly - he took my call too!  He was so happy to get more information saying "I didn't know if you were sure it was a rock at the time of the x-ray but I see now this definitely looks like a stone. It will continue to move, if it does not then you will see the GI doctor.  I see this all the time and it is very normal and should be absolutely nothing".  He was so great!

So I dashed out to get some prune juice for the girl - let's get this party started!  Please pray!  Pray it passes first of all.  Secondly, pray it's not too bad for the miss.  I'm hoping she can get it over with and this weekend will really "rock" for her :).

And sorry about the scares for all of you - by the time I wrote it I had already been through fear, guilt, frustration, fatigue, worry and a whopping extra load of guilt. I was ready to move on to humor!

She ended her day with a little Wii playing,

 and some snuggling with a sock monkey.

 Everything's going to be o.k. Ellie - I'll be here for you when it's time for you to show us that rock. In the meantime - happy heart anniversary our heart baby.  You made your momma's heart skip a beat today for sure!

Heart Baby

One year ago, on February 6, 2013...Ellie's hole in her heart was no longer!

Here she is recovering on that day exactly one year ago!

And here is the big girl today!

"What, dey really cut me open and fixed my heart?" 

 "I just don't member any of dat!"

"But I'm happy - it all seemed to work out!"

During our time(s) in the hospital, Ellie was always referred to (like the other kiddos there) as a "heart baby".  Nurses would always say "heart babies sweat more",  "heart babies need more oxygen" and things like that.  It kind of grew on us - Ellie is our heart baby!

So here we are with our heart baby - one year later.  We thought the day was worth a little celebrating.

Ellie and her crew in their heart shaped glasses (and hearts on her shirt).  And trust me, if I could have had all four of them in one picture I would have but the picture of her required all of their help!  

UPDATE:  Okkkkkkkkkaaaayyy...I had typed this and saved it and was down the last picture WHEN I heard Ellie crying.  I had been checking on her often in the boys room while I was finishing up school and typing the above.  There was peace in the kingdom and I knew she was playing with some of the kids plastic animals.  But, when I got to her, she was in the boys closet which is always closed and there are two giant bins of "special" items for the boys which always have the lids on.

Want to guess what the child who hardly puts anything in her mouth, never mind swallows it, did on her one year anniversary of heart surgery?  When I got to her she was alternating between crying, gasping, gulping and dry heaving.  I knew something had managed to go down. I searched the boxes (I have them memorized) and knew right away what was missing.  A "gem" found in the street - a tiny purple rock (or plastic jewel from a ring?).  Now, who in their right mind would even allow the risk of a baby getting a hold of this?  Well, number one - I'm not in my right mind.  Number two - she doesn't put things in her mouth!  But I guess she's sort of starting to do that at the dinner table when you hand her a cracker or something. 

So I  debated Heimlich as well as helping her throw up while I dialed the pediatrician and I knew right away it was a dime sized little rock the kids found on the street. Shiny and purple - worth keeping forever.  She was obviously breathing so they said what I thought they would - let's get an x-ray.  Luckily there's a Chick Fil A in the hospital so when I announced at 11:45 we were going to the hospital - cheers followed when I told them we'd be getting lunch.  

I connected with Jeff and he said "do you need me?" and I easily was able to say "nah, I got this". Because "this" is nothing like "this".  Now, here's how you leave your house for an x-ray at a busy hospital at 11:52 and pull back into your garage at 1:05.  When you've done this act a few times, you kind of have it down.  

You tell your little soldiers that they are to do what you say and questions must be limited (I can't believe this actually worked). You call the hospital registration desk and speak to a nice girl named Ashley. Ashley does all the paperwork for you ahead of time so all you have to do is say "I'm here" when you arrive.  You have a home fax machine so the doctor faxes the x-ray order to you.  You dash out the door with the x-ray order.  You drive to the hospital quickly.  Not too quickly, but certainly not slowly.  You find a good parking space (this is luck). You get the stroller, put baby in it and tell everyone to hold on to a part of your body as you speed walk to the door.  You pass Chick Fil A and take orders as you walk. You meet Ashley - she says "a few more to print". You say "Ok, I'm going to grab lunch". You get four bags with everyone's food in it and a cup of water and hand it out and say everyone is responsible for their own food (your youngest must be at least four for this to fly).  You go back, grab the papers and go to radiology. You sit for just a minute (more luck) and then go back. You get the college student to watch your kids in the hallway so they don't get radiation. They deal with the task of eating standing up.  Have I mentioned our kids are amazing yet?  We get the job done, Mom spots the rock before the tech does and you pack up. Radiologist will call doctor.  Speed walk back out, this time I'm eating my sandwich, and we get in the van.  Kids keep baby awake by handing her things.

We came home, got Ellie to sleep, prayed she was ok and tried to laugh.  Laugh at the irony of a clean house (super clean due to a marathon cleaning last night) and one little box and one little rock for our little girl.  Anyway, now we're in the hands of a gastro doc in town we've never seen because it appears the rock is kind of in a weird place along the GI tract.  Maybe it will pass, maybe it is kind of wedged?  Not sure.  

SO, my friends - please PRAY for Ellie!  On the anniversary of her surgery, she's in a hospital with a rock in her gut!  Lord have mercy, please let her be ok!  I'll keep you posted but for now we go at 9:00 tomorrow morning.

February

The weekend is here already!  AND the month of February which is a pretty special month to us.  We love Valentine's Day, St. Bernadette of Lourdes is meaningful to our family, there's the Super Bowl, we can't wait to learn about all the countries in the Olympics, we're going to a hockey game, basketball is over/golf restarts, Mommy's birthday and we all go to the dentist!

We liked February a lot already but the year 2012 made a few interesting impressions in our minds and hearts.  

First, it was the month I began to really deal with our prenatal diagnosis in other ways than despair.  

Secondly we were approaching one year of having our house listed for sale.  We had said if it didn't sell by the first of March then maybe we could just postpone any showings until after the baby was born since having people come through your house interrupts life so much.  But then showings really started to pick up in February and finally - FINALLY - we got a nibble.

We went for our own nibble for my birthday where I could not eat sugar or bread (no cake) due to the 3-hour glucose screening I had the next day since I had failed the first screening for gestational diabetes.  (I passed)  Right before we left we got a call that someone wanted a second showing on the house. It was pouring rain so we did a fast staging then left it in God's hands.  When we got home from dinner there was a message that the guy wanted to make an offer!

We signed the contract for the sale of our house on February 29, 2012.  By the grace of God, it happened to be a leap year so we sold the house in February indeed!  We then jumped into our dream situation of getting this home and not having to move until after the baby was born.

Ellie is happy about February too and wanted to send you some smiles :).

"I do love February too!"

 "And I love sitting - I hardly fall any more!"

 "If I ever feel like I'm going to fall - I just put out my arm like this and it helps me balance."

  "My bunny slippers are so comfy."

 "What?  Adults don't wear bunny slippers any more?  Why not???!!!"

Smiling for Xavier.  Ellie lets me rub her face with lotion at night to help with her dry skin.   

Ellie knows our house - it is so neat to watch her turn corners and take shortcuts to get where she wants to go.  Which is almost always where the people are!