Overwhelmed

When we were pregnant with Ellie I was overwhelmed.  Overwhelmed with fear of the unknown.

Now I often find myself overwhelmed for lots of other reasons.

Overwhelmed by how cute Ellie is. It's fun to just stare at her when she smiles because she usually gets the vibe your putting off and goes in for the hug.

Overwhelmed when I see Julia take the lead with Ellie at bedtime and remove her glasses, sing her songs, read her a book and give out hugs and kisses.

Overwhelmed with gratitude that we've been given four beautiful, terrific children that fill our lives with great meaning.

Glasses

Ellie has a new look!  Our girl has glasses!  The final of the three medical issues this summer was one of the most challenging ones.  It took time and will require some follow up in a couple months but so far - it's going great!!!!

For about a month or so, we noticed one of her eyes was crossing.  This is a very common issue among kids, typical children and children with Down syndrome.  It's easily corrected (most of the time) with lenses or patching the "good" eye.  Rarely is surgery needed.

So after seeing the one eye doctor in town that sees kids and learning he does not treat this issue, we had to wait a bit for an appointment in Atlanta.  But we were on the way out of town anyway the day an appointment came open so it worked out great!  We had practiced dropping water in the kids eyes all week - all four were cooperative and excited to receive the warm water in their eyes :). And if you can believe this, Xavier woke up the morning of the appointment with a matted eye - some kind of infection!  So the office worked him in and he got examined first which probably put Ellie at great ease!  She did great and we left with a prescription for glasses. Two weeks later we had her free pair, thanks to her great insurance through the state of Georgia.

After a long day, we finally arrived at our destination out of state.  There was a church sign on one of the roads that said "Fixing your Gaze".  God is fixing Ellie's gaze as we fix our gaze on Him!!!!!!!

And we thought she couldn't get any cuter!

She's just catching up on what the NFL season will have in store.

What a dream come true - Daddy's work caters in lunch from our favorite restaurant and we are the lucky recipients of the leftover chips!  Ellie in position for the best 3:00 snack ever!!!

Speaking of Daddy working - this is the scene of Jeff coming home after his first day!  Everyone found him, even Ellie brought her iPad for entertainment!  This doesn't even look like a king-sized bed! 

End of Summer

This summer was "The Year of the Table"!  A beautiful table and chairs made its way to us from family in Kentucky.  It needed some TLC but after a few weeks outside (notice the box fans!), we have an almost brand new table in our kitchen - much bigger than we had before!

Another trip to the grandparent's house!  Here is Julia helping Ellie in an indoor playground!

Ellie joined in the card-playing fun!

Celebrating 4th of July in front of the t.v.!

Medical update

As I mentioned back in May we had three concerns this summer with Ellie's medical issues. 

The first issue was ruling out sleep apnea.  Well, after 3 attempts at home due to faulty equipment and then a tenacious Ellie pulling the tube out of her nose - we got the results we'd hoped for!  Ellie is a healthy night breather!  All good!  Here she is getting ready for bed.  The fact she made it through all 3 nights with only minor complaining is a testimony to how great of a sleeper she is!  Although - for memory sake...I don't want to forget Jeff and I climbing in her bed after she was asleep at 9:30 to try to get the nasal canula in her nose.  That was the one thing she would not let us do before sleep. So, one of us straddled her and one of us shone a flashlight in her face.  We'd abruptly freeze and hide the light whenever she moved. We came out sweating each night - we traded jobs back and forth from one night to the next.  I believe Jeff was the final victor on the last night when it worked!  

All zipped up so she can't mess with any of it!

We made it as fun as we could!

Then we were off to the hospital for annual bloodwork.  I went to a different hospital this time that normally doesn't see pediatrics - but I'm always trying to think "outside the box".  And lucky for me - there was a phlebotomist there that used to work at Egleston in their lab!!!!!  God is good!  So we chatted in the lobby (without Ellie there) and I pre-registered and by the time I brought Ellie in the next day - there were three people there in the lab to greet us!  It went SUPER well - she started to cry just a little but the nurse distracted her, I held her in my lap and sang songs and the phlebotomist got the job done!  And good results there too - all normal.

Here I am filing out comment cards on everyone that helped us!  My handy clipboard that a nurse gave to me one day in 2012 during our first admission when I had papers scattered everywhere in the hospital room.  A loving gesture - I treasure my clipboard.

Braves

Our family went to an Atlanta Braves game!  

Here we are squeezed into a crowded shuttle!

I must say, this was the last of Ellie's smiles for the day.  Once she got in the stadium and heard the loud, echoey music and saw the large, fast and busy crowd...even from the stroller with her iPad - it was all too much.  We had crying.  And some screaming when I wasn't moving fast enough!  I was trying to get us to this room I had arranged to have access to weeks beforehand.  It's generally for nursing moms but I had obtained a pass for us to have access to anything "special" we needed thanks to a program the Braves have for "Exceptional Fans".  

So here's Ellie happy in the quiet (very) quiet, air conditioned (very) air conditioned room that we stayed in for 3 hours watching the game on a big screen television. I had some lovely chats with some moms.  Even with a wife of a player from the other team! 

In a tender Mommy and Daddy moment, Jeff went out of his way to come to the door and knock and bring us something to eat.  I had texted him that I tried to get us a snack but was failing miserably due to her inability to tolerate the noise while we waited in line.  The girl outside the nursing room gave a knowing smile when I teared up receiving this giant back of popcorn  love from Jeff. 

That kept her busy for a while!

And here we are on the field afterwards!  A wonderful escort took us right down so we could "run the bases". The tunnel through which we traveled was lined with players headed to the locker room.  We tried not to stare. 

Ellie did a great job running all around the field!

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!