Trick or Treat!

Last week my sister got married!  It was a fun event outdoors and we all had a great time!  Well, Ellie was fighting a cold and slept on the way there so she was pretty much out of it but...they rest of us had a ball! 

Just as precious asleep as she is awake.

The family proudly finished a 1,000 piece Halloween puzzle just in time for Monday.  It was the first time we'd done it and there was a missing piece!  Don't you hate that?  ;)

Time for Trick or Treating and the long antipated costumes - Mario Brothers and Toad from Nintendo!  It's not like they haven't played  hours and hours of it!  And little Ellie went as....

Blue from "Blues Clues"!!!  She was super into it!

I went as a Cubs fan (woo hoo!!!) and Jeff got lucky at a thrift store and found a green shirt to look the part of the host of the show.

See the resemblance?
 

The first thing Ellie wants to do when she wakes up is dump out her candy like her sibling and play with it.  If you can believe our luck, she does not fuss or ask to eat any of it.  So far I've given her a single M&M and dinner time each night and she's over the moon about that.  Sweet and simple.

Check up

I think I accidentally forgot to share great news with everyone about Ellie's recent cardiology check up.  We've had the same heart doctor since she was 20 weeks in utero :) but this summer he retired.  A new, sweet, young cardiologist came to the clinic and with a cheerful smile shared great news for our family!  She said Ellie looked so good she can now be on annual appointments versus bi-annual. I usually take her April and October and now we just have to go once a year!  Go Ellie!!!

Here she is with big brother Xavier.  The two of them relaxing, putting their feet up :).

Can I document the fact that this week the door to the back yard has begun to swing open and closed and open and closed and open and closed like it usually does? :)  The yard has been unused since about June and it's a noticeable change to have kids in and out and in and out and....I think you get the picture. What better way to celebrate than a bowl of freshly popped popcorn with just the right amount of butter and salt?

I sure am glad I gave eating a chance!!

 These past two weeks have been a bit a little challenging due to the fact that I decided to administer standardized testing in our home.  I had a couple choices including going to the library on two or three Saturdays to get it done but I decided to let them do it during regular school hours. The challenge was keeping Ellie absolutely quiet.  I'd say 50% of the time she was sitting down like in this picture not making a sound.

Ellie sitting in the background with her iPad.  Julia writing some letters and the boys concentrating.  I used a saints book to divide them and remind them what is truly important :).

The other half of the time though she was pulling Julia (who was not taking a test) or needing me.  It worked out ok - we finished!  Doing these tests remind me of how grateful I am for homeschooling. I can directly see what the boys might need extra help with and I can tailor their education toward that.  It also reminded me how academic testing is just one part of their formation and I'm happy to say we've moved back into our normal rhythm or our day.

Jeff and the kids were playing a game and Ellie was cheering for them!  Every time someone said "yes" or "great", she'd put her hands in the air and say "yay"!!!

 The other day we were doing a video chat with some friends that moved and all of the sudden, Ellie came crashing into the scene and stuck her face right in the camera.  It was cute and funny and we all laughed.  One of the boys said "Here's Ellie-Asaurus, watch out for the attack of Ellie".  And right away, Ellie put her hands up to her mouth like she was going to yell and she made a roaring sound!  We all froze, we could not believe it!  She did it again, "RARRRRR" right into the screen!  She heard us say something about an attack and did she even know we were referencing a dinosaur?!!!  We were stunned!!!  It was awesome!

After two months of having the iPad, I finally got all the pictures I wanted with her using it to write a thank you to the foundation that awarded it to her. I wanted to get a video of her using it and it took a while to get just the right thing I was going for.  But her are some of the pictures that I ended up sending in. She was happy to pose and kept turning it around for me to see. I think she wanted "Steve" to be included in the photo too.

She has started this adorable thing where she gets a notebook and writes along with the character when he makes notes in his little notepad in the show.

She's very serious and changes crayon colors often.

There's a great game she likes where she moves shapes around.  She's improved immensely with this since first starting with it!

 
I'm happy to share with you the finished product of the quilt I told you about. It will go to the Cardiac Intensive Care Unit where Ellie struggled (and recovered!) from pulmonary hypertension and where she spent those precious few days healing after her open heart surgery.  A few months ago I learned about a friend of a friend who had a baby with Down syndrome in Arkansas.  He was fighting some of the same cardiac and pulmonary battles Ellie faced.  But his conditions seemed much more serious and I read daily emails wringing my hands worried about this sweet little family and their firstborn son, Walt.  They nicknamed him "Walt the Warrior" for his strength through his 9 month battle.  Their family was handed the heavy cross of giving their son back to the Lord last month.  Here is the quilt that will be circulated through the ICU covering babies and children like Walt and Ellie.  His name will be read by many and he will be remembered.

 We had to say goodbye to our wonderful physical therapist who we loved very much!  She's moving on to a different place and we'll miss her!  Here's Ellie working with her on her last appointment.  Luckily they are replacing her next month so we look forward to meeting the new person.

The kids all had a few dollars in their wallet from birthdays, tooth fairy, etc. and wanted to know if they could go grocery shopping!  I almost never take them to the store with me, I'm a well oiled machine with the same list every single week so it's not really that "fun".  But we went on a day where we didn't "need" anything (well, bread always manages to make it in the cart!) and the kids got what they wanted!  Their favorite cereal, fruit and of course things like jello ended up in the mix too!  But we had separate purchases and counting of change and everything!  They were good about sharing their food at home (but mostly stuck to their own items). I think we'll be doing this again!

Ellie was in charge of driving the cart around.

October

October and cooler air has come rolling in like this "train" the kids made on the floor here.  We have Julia as the conductor with her cash register where she took our money.  Jacob and Xavier are in the first car playing a states trivia game using the train's wi-fi.  And Ellie is lounging enjoying the on-board television show.  It happened to be Blue's Clue's - what a coincidence!  I rode in the caboose to support the Georgia bulldogs.  

My view from the school table.  A patriotic Ellie watching the iPad.

Ellie climbed up one evening after bath and shared some chips with Daddy.

Here Jeff is pushing her hair out of her face.  Ellie has this "trust face" she gives us that reaches right down into the depth of your soul!  It's a rare chance that I catch it on camera.  Jeff paid the price of having a mouth full of food in this photo but we both know the cost of being married to a journalist.   

Now to announce a very special project on my sewing table!!!  You might recall when Ellie was in the Cardiac ICU at Egleston the nurses just doted on her like crazy with stuffed animals, blankets and hair accessories.  It was so caring and sweet to come in each morning and see how they'd dolled her up!  All the blankets got washed with the sheets so we saw many different ones during our stay.  One in particular though stood out. It was a quilt.  It was blue and white and on the back I noticed there was stitching that read "Made with Love by the Women's Group of (insert church name here)".  If that was not THE moment I decided to learn to sew when we got home, I don't recall a more powerful inspiration.  I had a machine that I knew how to turn on and sew a straight line.  Thus in 2014 I began my journey to sew clothing for the kids and I loved it.  Always with that ICU blanket in my mind, I started the process of learning to make a quilt.  It is a craft indeed and I am thankful I've had some on line resources to help me learn.

So two years and four quilts later, I wanted to donate a quilt back to Egleston to be used to provide comfort and cuteness to another child in a scary medical situation.  There is a national organization that you go through to donate quilts to hospitals - isn't that handy?!  And there's an Atlanta chapter that has a list of places they deliver quilts to including Ellie's old ICU home!!!!  There's a lovely woman who I connected with and imagine my surprise when she said she'd mail me a "kit".  This group meets and with all donated fabric, they cut up squares and borders and backing and put it all together in a plastic bag with instructions and mail them out to people that can't come to meetings!  I got my kit two days and just stared at it for a few minutes.

My materials to start piecing together.  Cute little animal print with nice cheerful colors.  The instructions were just like every other quilt I'd made with some special notes to make it very "sturdy" like adding a few extra rows of stitching to hold up through the washes.  

Making this quilt has made me so full of joy! I think about the past of her being there, the present of her being so much better and home and the future of what children it will touch.  There's even a tag that comes with it that you can write your name on.  That part of the story will be a future post.  There's a special name I'm going to write on this first one. I expect I'll make many many more and they say you can write whatever you want on the label.  When this one is finished I'll most certainly share every inch of it with you!

Now to some unexpected events that came at the end of September.  Jeff and I both lost our last living grandparent.  Actually my step-grandmother is still with us and lives in Indiana near her children.  But the loved ones that passed are my dad's dad, and Jeff's mom's mom.  My Pepa died on a Monday and Jeff's Oma died the following Tuesday.  It was sad for us both and when we told the kids they associated it as losing their own grandparents.

My extended family still lives in Kentucky so we decided to make the trip to attend the funeral.  It was not an easy decision as we have about 27 things that we have to sort out before we go.  At this stage of our life, even at the very last minute another variable got thrown in the mix.  We decided to leave on a Saturday morning after a soccer game.  But for the third time in about a year now, Ellie did the "wake up and go back to sleep on the couch" thing.  It is the strangest thing to watch and we really worried the first time it happened last year.

Dr. Xavier checks her out.  Good respiratory sounds, good heart rate.

This is no joke.  If you leave her side she wakes up for one second and must feel good enough to get up.  But she makes it two feet then....just lies down wherever she is including the hardwood floor.

I put her back on the couch and here's another attempt she made of getting up.  At least this time she found the rug.

We've talked to both her pediatrician and her cardiologist about it and they both say there's nothing to worry about. Some kids just don't get enough rest and feel tired in the morning. The other day I saw Ellie close her eyes and nod off and dinner so I think when she's tired she just wants to sleep.  She's always been a good sleeper, from day one.

By 10:00 in the morning she was feeling better so off we went to Kentucky!  Of course you-know-who was right there with Ellie the whoooooole way!  Meet "Steve".

The iPad and its charger came in huge during the FOUR hour delay we had due to an accident on I-65.  It was a terrible wreck which is very sad to think about.  Luckily Ellie never even noticed and the other kids were occupied with their own games and books and bags of chips and cookies snacks.  :) 

Once we arrived there was excitement in the hotel of course!  Hotels are FUN!!

Here we are getting ready for my grandfather's funeral.

We were on the top floor which was a mix of scary and cool!

Back at home, someone was turning 7!  Happy Birthday Julia!  She wanted to be "Toad", a character from Mario on Nintendo for Halloween, so here's what the internet's good for. Behold the toadstool hat she's barely taken off since the party!

 Julia loves rainbows which suits her bright, beautiful personality!

One final note here.  If you will allow the melancholy moment surrounding a...plastic fork.  In 2012 when we moved into this house we had a 6-week old Ellie on oxygen, feeding tubes, medicines...you remember right?  :)  A simple but thoughtful gesture of one of Ellie's loving grandparents was to supply us with some paper products and eating utensils to make life easier with the move. Plus now we had the pantry space for such items!  This orange and white box has been on our bottom shelf for four years.  It's not that it took us four years to use 600 forks, we could have used them in four months. They were just so nice (so sturdy and strong, it even says so on the box!) we only used them occasionally.  This weekend for Julia's birthday though we came down to the end of the box.

The one remaining fork with our one and only Ellie.

Each time I see something from "the old days" of that difficult season I pause and thank God for all of it.  The challenges and the triumphs, the tears and the laughs and most importantly that Ellie is now "strong and tough" holding her own fork full of chocolate cake.

School Days

What does a homeschooling house look like at 11:38 in the morning on a Tuesday, you ask?  Let me show you!

Ellie likes to set up a picnic for her and her iPad friends.  Here she is with "Steve" from Blue's Clues with no shortage of drinks to go around!

The two that finish school early can play some learning games while trying (trying) to be quiet.

The oldest is often left alone to finish off some harder subjects and have some one-on-one time with his photographer teacher.



Dr. Ellie was making her rounds doing some check ups when it was time for a lunch break.  In this picture the other three are all into a book.  I at least got them to the table by telling them they could read but they had to eat.  A good problem!  A rare problem so I had to document it! :)

One night we were tucking the kids in and I realized, "We're all wearing blue!!!!"  I used the timer on the camera to capture it.  Completely unplanned!  Maybe it's a subconscious choice we're all making since we're watching 27 episodes of "Blue's Clues" every day.

Olympics!!!

What made starting school August 15th this year a WHOLE lot easier was the fact that we had Olympics to look forward watching the rest of the day after we finished.

Here we have: Jacob - 6th grade, Xavier 4th grade, Julia 1st grade and Ellie who has enough learning/fun things on her iPad to last her entire education!!  The boys sit next to each other across from me and Julia sits to my left.  Thankfully Ellie is beyond the age of really "messing" with stuff so we have all our stuff out like we want it and she walks by.  Although one day last week I did have some lovely "scribbles" on a notepad I was keeping some thoughts on.  :) 

Some special things about this year are of course the iPad for number one.  Ellie has unlimited videos I've downloaded, most of them have some form of educational element.  I even found some things for older kids that she seems interested in and when Julia is done with her books (much earlier than the boys) I love her enthusiasm in skipping over to Ellie and sitting next to her. I can see them sitting on the couch together from where I sit. Julia flies through her books just to go sit with Ellie.  Sometimes they drop the tablet for a game of pretend cooking.  Another thing this year is I have about 4 "group subjects" that I'm teaching the boys at the same time.  They are challenging for Xavier but I love seeing him keep up.  We do French together as well as this editing book of mistakes I got that they love correcting.  I also try to read out loud to them every day and have them dictate or summarize what I write before they dive into their main subjects.  If it weren't for Ellie being content with her iPad (and she'll let you know it's hers if you try to hold it, lol!) I'd never have the quiet, focused time with the boys. God is involved in this area in a major way for it to even be possible to pull off schooling the children.

On to the Olympics!  We got really into the games this year.  I was telling Jacob, the 2004 Summer Olympics began the day we came home from the hospital with him, August 13, 2004.  That basically saved my sanity, watching the excitement on t.v. as I adjusted to the realities of having a newborn.  Then in 2008 I really can't remember much since we had two active little boys running around the house at the time and didn't watch much television.  Summer games of 2012 - the dates almost perfectly aligned with a hospital admission for Ellie to get her feeding tube surgically placed and stay for a while until her pulmonary hypertension got a little more under control. 

Here are the dates:

Hospital admission: July 26 - August 17

Olympics: July 27 - August 12

Here's what I remember about those hospital days during the 2012 Summer Olympics in London - we had it on the channel and as nurses came in to check on her, they would linger a bit to catch an exciting moment on the t.v. before they walked out.  I myself was not fully engaging in the events but I recall it was nice to have it on in the background.  It felt comforting to have it there as a reminder of normalcy and it was also inspiration to preserve through this challenging time.  Sometimes just waking up, providing milk for her and the smallest amount of self care felt like a 100 meter dash in those days.

Here are our four Olympians practicing a "marathon" by walking (no running please!!) laps around and around the house!  Julia and Ellie held hands as they kept pace with the leaders :).

If only I could remember why Ellie does not have a shirt on.  Maybe it was because she just ate and it was dirty.  Or maybe I was in the middle of dressing her when the race began.  But a good photographer does not stop to make adjustments to her subjects lest the moment pass!

How cute is Ellie's expression in this picture?  And her little leg in motion?!!!  She looks like she's doing a ballet move! 

Would you allow me to share our "top Olympic memories" we've all compiled together? It felt worthy of archiving and I thought this would be a good venue for that. 


1. Speaking of venue - the number one memory has everything to do with the location in Rio de Janeiro, Brazil. During the Opening Ceremonies there was a camera shot of the Christ the Redeemer statue with a green light shining on it and the stadium in the background. The symbolism of Christ watching over the stadium and city moved yours truly to tears.


2. The debut of golf in the Olympics.


3. When Brazil won the gold in soccer.


4. A bike race where the leaders got into a surprising crash at the very end and as badly as I felt for the leaders, something like number four ended up winning.  We liked the lesson of perseverance and "it ain't over...".


5. A ping pong gold medal match with some serious Chinese rivals!


6. Sweden and Germany Women's Soccer gold medal match.


7. On the very first day of the games we decorated Daddy's room at work and the kids all watched Olympics while sitting in desks.


8. Watching the 8-person rowing events.


9. "Uncle Ralph" - a track and field race where an American won and the family of the athlete went so crazy in the stands that we named the people.  Mainly Uncle Ralph who climbed on top of the father of the athlete and started bouncing up and down on his (presumable) brother.  As a result, multiple people were squished and falling over and the whole thing was quite entertaining.


10. The night I took Ellie to the ER, Jeff had to go back out for the medicine pretty late.  I stayed up and waited for him while watching swimming on t.v.  I laid in bed with the cell phone so we could text and I watched Michael Phelps swim for the first time.  I remember it as a good distraction after a long day.


11.  The kids drew country flags on index cards and we hung them in the house.


12. "Everything" - well said by one member of the family.


Of course one can't forget about the Winter Olympics.  Admittedly, the sports are a little harder to relate to.  But we looked up that they will be held in February 2018 in South Korea and we are excited about them already! And one more programming note - the Paralympics start September 7th on NBC in the same Rio venues.  You could say this year is really the first time I've made the connection that this "second Olympics" is as much as a real deal as the first round of athletic competition. I'm almost looking more forward to seeing those two weeks play out than I was when I was bouncing up and down on the couch to cheer on Michael Phelps in the pool!  That says a lot!  There are so many lessons to learn from the Olympics, I can't wait to sit with the kids and have some discussions about the everyday challenges these individuals face.  Of course one day we hope our Ellie can be in the 3rd form of Olympics - the Special Olympics that are held in most major towns in the U.S.  I wonder what event Ellie will want to try?

Tissue

A story I never want to forget:

About a week ago I was sitting on Ellie's bed - the canopy of the tent over my head, the enclosure providing an intimate setting for the two of us.  There was a glow of a light from an aquarium toy given to her by a Godmother of the family.  I stared at her and she stared at me and I just started busting out crying.  The kind where you kind of heave and make funny noises.  The journey, the love, the transformation of the 4 years...it all came shooting out of my eyeballs in the form of tears.

I told her why I was crying - because I love her so much - and I hugged her and left. The next night we did the same ritual and instead of crying I just looked at her and said I love you and started to leave.  She started to say something like "shoo shoo" and pointed to the bathroom she shares with Julia. After taking some time to figure it out I thought she is famous for bringing me a tissue when I cry.  So I said, "tissue?" and she said "uh huh".

Infection

Friday the 5th we went to a playground, then the library. That night after shower we noticed a red spot on Ellie's leg. I wondered if she fell and I just didn't know?  Then Saturday it started to look different.  Blisters, bubbly, red...I'll stop there.  This is what it looked like by Sunday evening.

Not wanting to wait and thankful for the very good pediatric ER in town as well as a smooth insurance process thanks to having two insurances...Ellie and I loaded up the iPad and headed to the hospital. It was a 5 minute wait to get in and the whole thing was a big adventure for her.  She and I on a fun trip for an hour and a half!

It turns out it was a "staph" infection as we had suspected. But, treatable by antibiotics and really not a major deal at all.  Well, if you catch it early and treat it I should say.  So, on the way home we stopped at the one pharmacy open 24 hours in town and turned in the prescription. It was an hour and a half wait so we came home and I put her to bed.  All the kids were so happy to see her and learn she was ok.  They all went to sleep and Jeff went out at 10:30 to get the medicine.  I laid in bed watching Olympic swimming waiting for him to arrive back home.

The next morning I had no idea how the oral (liquid) medication was going to go.  She had never taken medicine by mouth before!  Back in the day, it allllll went in the tube! Well, thankfully they make it taste good so I put the 5 ml dose in the syringe and made it fun and like a little baby bird she sucked it right down!  I was so thankful!  Just precious.  And one night (the night of Jacob's birthday) I forgot the p.m. dose and she was already asleep!  I could not miss the dose so I crawled in her bed with the syringe and roused her slightly. She opened her mouth and sucked for one second and licked her lips and then closed her eyes again.  I had more to give so we repeated this process three or so more times until it was all gone.  I can not tell you how sweet this was!  I had a little light from a toy in her bed and it was just so sweet how trusting she was. I love that little baby bird!  :)

5 days later her leg is healing and she's been feeling great all week.  Happy, loves her iPad game and videos and eating great.  Just coming and going around the house in the rhythm of our days here now as we transition and get ready for school to start in next week.

Rooms

More on the bed which Ellie continues to LOVE and dive into every day for a short rest time (no napping any more) with books and toys and night time for a solid 8:30 pm - 8:00 am sleep with no peep!  The bed came in this suitcase that is meant to be for travel with it.  It's a very nice hard shell suitcase!  And it's green which is her "favorite color" that the kids picked for her wayyyyy back before she was even born.  Jacob likes red, Xavier orange, Julia yellow so....naturally they decided we had to keep in order with the rainbow :).

Anyway if you do travel with it by plane you are supposed to tell the airline it's a piece of medical equipment and there's no charge.  I hope one day we get to do that!  But I can't help think of the very distant future when one day it might just have some of her clothes in it and it will be a great memory of that special bed that kept her safe when she was younger.  Where will we go I wonder? 

For Julia - we agreed to let Ellie sleep in her room for a trial period. The boys share a room - as seen here.

This is what the girls' room looked like when they joined together. For two nights. That was all we all could handle of  the shananigans Ellie had up her sleeve. "What, my favorite playmate is right next to me?  What, she wakes up at 6:50 - I can do that too", said Ellie in her mind.  So she's back to her "green room" and thank the Lord she never fussed about missing her roommate.  It helps that Julia tucks her in every night.  So, another time down the road we'll try it again.

What's been very sweet is Jacob has had some really late nights with out of town events so Julia gets to "sleep" in his bed in the room with Xavier until he gets home.  The two of them love that time together.