Summer

Ellie is having a great summer!!!  How can you beat ice cream right out of the container?!!  Fed to you by your awesome Daddy no less.  Can't get any better!

But wait, it does get better!  An amusement park with endless turns on this adorable boat ride!  Ellie had a ball...she realllly got into pulling on the rope to ring the bells!!!  She did awesome tolerating the heat and was incredibly flexible given the circumstances of running around here and there to meet everyone's  needs at the park.

Weeeeeeeeeeee!!!!!!  She loved this whale ride - up and down!!!

Ellie loves to be held by Daddy.

We hit some balls at a baseball field and Ellie watched some...

but then of course she wanted in on the fun!!!

We have a few more fun things planned for the summer but some time at home relaxing too.  Some of her medical stuff will take place this week including her sleep study and eye exam.  

I had to squeeze in this picture for memory sake.  This cup Ellie is drinking from - it has been in the family for a looooong time.  It was given to Jacob at a nursing support group when the lactation consultant brought a stash back from a conference.  It said "Milk is from my Mommy, Juice is from my Cup".  Jacob loved that cup.  Xavier used it.  Julia used it.  Ellie uses it...exclusively.  That is HER cup.  Her one cup.  Her only cup.  I fear for loosing it.  She is really into it.  

It has a pointed spout so the funniest thing is when she walks around the house with it in her mouth "hands free".  Cracks us up!

I hope this is not foreshadowing in any way shape or form but I felt a need to document the cup's existence.  By the way, the words are completely worn off.  That happened a couple kids ago :).

And one other note - Ellie said what was really her first "two word sentence" the other day.  We were travelling home from vacation and stopped at a sandwich shop. I was filling water cups at the drink machine and Jeff had Ellie towards the front.  The other kids all wanted to help get straws, etc. and Ellie wanted to join us too!  She pointed to her chest and said "Meeeee, Ma?"  She says "me" for herself and "Ma" for Mommy.  It is the cutest thing!!!!  She wanted to come to me!!  When I come into a room she says "Hi Ma" or "Hi Da" for Jeff.  But being able to express she wanted to go help me was super exciting.  It's the little things!

Hope you are well and having a great summer!  "Hi" from Ellie"!

Thankful

I am having one of those moments when I just want to document my gratitude.

I'm thankful we are done with school for the year. One more year down, we made it!

I'm thankful for our wonderful library and this collection Jacob got us into about 7 years ago now.  They are what we call "letter books" and there is one for every state and tons of other topics too.  We currently have 145 library books in our house!  It's a summer tradition for the kids to read them.

I'm thankful I met a nice mom at the library who homeschools her five kids. After talking to her for a few minutes I learned that the cute little toddler she was holding in her front carrier is completely blind.  You just never know what people have going on!  And then another lady at the library approached me and said she was days away from adopting a little girl with Down syndrome and had prayed she could meet someone to talk to about it!  I told the kids when we got home that "God used our family to help someone today" and Xavier said right away, "God used Ellie".  So right, Xavier!

I'm thankful that the kids still get a kick out of the "treasure box" with fun toys for a reward for reading 10 books.  Someone picked an "Old Maid" card game and on the way home they were cracking up in the van guessing the names "Doctor Dan", "Painter Pete", etc.  

I'm thankful that Ellie is happy on her swing and even takes her iPad and toys up on it and swings as she plays/watches!  This photo is blurry because she was moving so much!  She's taking a bite of her lettuce.

I'm thankful our neighbor brought over some cupcakes leftover from a work function.  Our home is a good place to bring extra food!

I'm thankful for all of you that still visit here out of love to check in on Ellie!

Medical Stuff

About once a year or so we have to think about "medical stuff" with Ellie.  We used to think of this stuff all the time, every single day. But the frequency with which we think of her having certain conditions that go along with Down syndrome spreads out more and more with time.

But last week she had a check up and three things came out of it that I'd like to ask that you pray for. One is, it appears she's having some eye issues - one of her eyes crosses sometimes.  So we need to have that checked out. And the other two are screenings - bloodwork again and possibly another sleep study to rule out sleep apnea. Both of these last two things will present challenges so if you could please pray that all goes smoothly and both things are as uneventful as possible for Ellie. And that the outcomes are all good and she continues to do as well as she has.

Other than that, our girl is tall!  Taller than 90% of 5 year olds with Down syndrome!  She definitely gets that from Jeff.

Thank you for your prayers, I'll update you in the future on all the results.

Mother's Day

 Mother's Day this year had an extra special and exciting twist!  On the way to mass Sunday I said, "Wouldn't it be great if the baptismal gown I made sold in the church shop today?"  When  we arrived at church I slowly walked around the corner into the shop and could see the dress was gone!  A grandmother had just purchased it for her new grandchild's baptism!  I was elated!  I received compensation for the gown and floated into mass, full of gratitude!

It was certainly a gift to sell something I had made.  I wanted to come home and make another one!  But the day was filled with more gifts - homemade cards, some sewing tools I had picked out and my favorite restaurant for dinner.  For fun, when I picked up the food I paid with the cash I had received that morning!  Moe's chips and salsa never tasted so good!  :)

Beautiful poems and drawings!

 Before I could start another baptism gown, I had to finish up a quilt I had started for the hospital.  Going back to the number one reason I started sewing in the first place, making a quilt for a child going through something similar to what Ellie did is incredibly fulfilling.  The fabric comes in the mail which makes it super easy to piece together and construct.  This is my second one I've done.  The first was dedicated to a boy, Walt, who lost his medical battle last year.  This one would be dedicated to a sweet little girl whom I never met but have a connection to her Mommy.  Ellie and Nora were both born April 17, 2012. Nora lives about an hour or so from where I was born in Kentucky.  Nora had heart issues and lung issues and an extra chromosome too.  Nora fought for a little more than 2 years and her Momma's blog is what inspired me to start blogging.  That and terrible cell phone coverage in the ICU :).

This fabric had little robots all over it and the back had a newspaper article about the superheros that stopped the robots from destroying the planet.  Nora certainly had super-hero powers the way she fought so hard those two plus years and I loved writing her name on the little tag that will soon circulate through the Cardiac Intensive Care Unit at Egleston Children's Hospital in Atlanta. Ellie gave it a few hugs before I  mailed it off.  I expect my brain will continue to think of Nora while singing Happy Birthday to Ellie each year.  

 To end on a musical note - Ellie has some exciting news!  I discovered a grant that will pay for piano lessons for her!  Here is her first lesson after the other three had their lessons with "Ms. Heather".  Ellie is marching to "Old McDonald" while "moo-mooing" :).  She has had two lessons now and runs into the room when it is her turn!  We sing, clap and spend a lot of time using other musical instruments along with the piano.  A xylophone we've had for years is coming in very handy!

She's so happy and is responding to it all very favorably!

Easter and Birthday!

When Jacob was first born, my good friend had just had her second baby. So she and I had a newborn together, but she also had a toddler.  I remember what a serious adjustment it was to have a human depend on you for food and comfort pretty much non-stop.  At least that was my experience!  So I asked my friend, in all seriousness..."When do YOU eat lunch?"  It seemed like almost every day around lunchtime Jacob happened to be sleeping in the sling and I didn't want to move!  My friend's reply was, "You eat while you make your toddler's food."  How different things are from your first to your second, etc. and etc!  That story came to mind as I was making snack the other day for the four and handed it all to them at the back door while I, myself, had an orange :).

It still blows my mind when I see Ellie feed herself considering what all she went through!

The boys were proud of their puzzles. I was proud of Ellie's self-control!

Happy Easter!

Easter and Ellie's birthday were combined this year - what fun!  She was soooo cute when she got a little golf set.

She held her finger up to her mouth to tell us "shhhh" before she putt.  We were all rolling!

And the crowd goes wild!!!!

Ellie is our little Easter Bunny!

Julia helps her open presents and then finds the gift that gets flung to the side in excitement to open more :).

Easter blessings!!!!

Ellie having some fun with her chalk outside.

More presents including bubbles!  She's really, really into blowing bubbles now! It's great to see her take a deep breath and blow!  Always thinking back to how far she has come!

Maybe too much partying??  The day after her birthday she woke up with that "look" she's had 4 or 5 times now.  "Floppy" as we call it. Straight to the couch, back to sleep. Then she'd want a drink.  Then back to sleep. Then she woke up and threw up her water which is also typical. Then she perked up and was ravenously hungry at 11:00 a.m.  At least she's predictable if anything!  But it's still always a little scary/nerve wracking when she does it.  So I figured if I documented each one it would help me keep track. She is so sweet when she cracks her eyes open.

The girls both happened to have been given Minnie Mouse pajamas!  Soooo cute!!!!

Too late in the day to ask Ellie to hold still ☺.

We recently went to a playground where Ellie was such a big girl!

Julia helps lay out the second quilt for the hospital!

Sewing

Almost five years ago now (😲) I walked into Ellie's Cardiac Intensive Care Unit "pod" as they called it and noticed a blue quilt was placed over her. All warm and snugly, I stared at her under the blanket and thought how comfortable that blanket looked. Comfortable, soft. But also, comfortable as in, homey.  

I observed the quilt some and found a tag on the back. It said something along the lines of "donated with love by ____ church women's group". Someone had made that quilt and it was rotated and washed and rotated again for the children coming in and out of the ICU.  At that moment I thought to myself, "If things ever get back to normal (dramatic, I know) I'm going to learn to sew and make a quilt to donate to this hospital."

After hours and hours of on line classes, a purchase of an above average sewing machine, friends from church who sewed and showed me the ropes, wearing headphones while watching how-to videos on line at night...I can sew.

I sew clothes. I sew quilts. I'm on my second quilt for Egleston Children's Hospital of Atlanta.  And I've started practicing another long term goal of mine which is to sew a Holy Communion gown for Julia next May.  But over spring break I got the idea to try to sew a baptism gown to possibly sell.  I have spent the last month researching, learning, and calling the customer help line of the company who made the pattern for the gown.

After lots of sweat, quite a few tears and even blood when I pricked my finger and I don't know how, but avoided getting it on the dress...I thought you might like seeing the finished product!

An old fashioned slip to go underneath.  Is that the sweetest thing or what?!

I plan on selling it to anyone at church that wants it and if there is interest - I'll make more!  It was fun and I always have Ellie to thank for a new hobby that I never knew I'd love so much. Another "gift" from Ellie.  She has brought so much beauty to the world.  In this particular instance - the beauty is in the form of the softest cotton you've ever felt and the most delicate lace you've ever seen. I pray the baby that wears it is as sweet as our Ellie!

March

Well I don't mean to only post monthly, but it seems like that's what it's been lately!  Thank you to the loyal readers who check in!  I'm lookin' at you Aunt Louise 😉!

Ellie got an adorable play mailbox that she carries around!  It had little letters and envelopes that came with it!  Those of you that have seen an episode of "Blues Clues" know the main character of the show regularly gets mail.  So cute!

We try to all pray each night in our prayer room and one night one of the kids suggested we take a picture.  But the self timer on the camera makes a noise right before it takes the photo and Ellie just had to notify us of this each and every time. After the 10th attempt we decided the picture would just have to reflect that reality!

The older three kids have played flag football for the past few months and Ellie and I (and grandparents!) have been half the cheering section for the team.  There are only 6 players and we have 3 of them!!  It's been fun. Luckily Ellie is happy with the episodes of shows I download or the many games she has on her iPad.   What's great about the iPad in these situations is there is really loud music played at these games along with whistles and cheers.  Ellie shows some signs of displeasure with the noise at the beginning but quickly becomes engrossed with her show!

You can barely see it propped up by the footrest. 

Julia and Daddy getting warm under a blanket after a particularly cold afternoon football game.  As you can see, Ellie goes wherever Ellie wants :).

The month of March means college basketball bracket time!

  The boys picked Ellie's teams with a very scientific method of verbally offering her two choices, then showing her a fist representing each team.

"Hmmmm...Villanova or Florida?"  This face is something she learned in Blue's Clues and it's one of the cutest things you've ever seen.

A bit blurry but Ellie holding her iPad getting ready for a football game.  

And a snack never hurts!!!