A Flower Girl in North Carolina

Throwing sand...a favorite activity from the weekend

We spent the long Memorial day weekend (plus some!) in the Outer Banks of North Carolina.  What a great trip!  Jason's nephew was getting married and Lucy got to be the Flower Girl!

She did great on the plane rides out there.  We flew into Norfolk, Virginia and then drove the 90 minutes to our beach house, which we shared with Jason's dad, sisters, brother-in-law and 5 kids, the youngest of who is just 9 month older than Lucy, so they had a blast!  Brody (the 2-year old) was the ring bearer, so Lucy had a few days to get to know him before they had to walk down the aisle! :)

The wedding was on Saturday night, at a nearby Marina.  The ceremony was outside and I was VERY surprised when Lucy and Brody walked down the aisle perfectly, like they had been practicing it for months!   It was really so, so cute!  We were so wrapped up in enjoying the wedding, the beautiful scenery and enjoying the food that we barely got any pictures of Lucy in her dress!

The dress...so cute!  (and she kept those shoes on ALL NIGHT!)

"Dancing" with the ringbearer - cousin Brody

The rest of the trip was spent catching up with family, hanging out at the beach and eating some amazing seafood.  Lucy is a total beach babe and loved every minute of getting her feet (and most of the rest of her) wet in the ocean.  She was covered head to toe in sand (as were Jason and I) pretty much every time we went.  Thank goodness our house was just a short walk from the beach and had an outdoor shower that we could use to rinse off!


All in all, it was a wonderful vacation and we can't wait to go back!!

Contemplating the meaning of life?

This is Lucy's "excited" stance - big grin on her face and fists clenched with excitement! :)

Running away from the rising tide.

Warming up in mommy's sweater...that ocean water is still COLD!

 Lucy has her next dilatation tomorrow - this time at Minneapolis Children's instead of St. Paul, so we are hoping that it goes as smoothly there as we have become accustomed to it going in St. Paul.  Due to scheduling conflicts, it was the best appointment we could get.  Prayers are welcome!  We will update you on the results.

Oh, and a HUGE praise God from the weekend - we didn't use Lucy's feeding tube once!  We were very diligent about getting her 3 meals and 2 snacks every day and encouraged lots of water, milk and juice drinking to stay hydrated.  She ate like a champ with just a few "spit up" episodes (mostly because we were at restaurants and didn't have her typical food available).  As always, we are so, so proud of her progress and thankful that God is healing her so fully.  Today is a day we focus on being joyful in hope..."Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)"

One less doctor on the list!

Getting in on daddy's selfie!

We met with Lucy's (former!) urologist last week and got the wonderful news that her RNC test from the previous week looked completely normal and her kidney function looked good as well.  That means that we no longer have to visit the urologist unless she has any issues in the future.  Yay!!  What great news!

She is doing really well.  At her most recent weight check, she was up over 23 pounds.  As long as she continues to gain weight, we have our pediatrician's agreement that we can continue to wean her off of her feeding tube calories.  We are down to one feeding a day through her tube, at less than 60 calories - Woo Hoo!  She continues to eat ground up food or easily dissolved foods.  We often tell her to SLOW DOWN and chew her food better to avoid a "spit up" episode.

Jason and I left her with my parents overnight last weekend and while we stayed downtown to celebrate our anniversary.  I was a little teary to leave her for so long - since I've been with her EVERY night since she came home from the hospital, but she did great for my parents and it was a rare treat for Jason and I to have 24 uninterrupted hours of together time, just the two of us. 

Anniversary dinner - so good!

I cannot believe how much she is growing up. She is such a little chatterbox and often will repeat things we say that we had no idea she knew how to say!

Hhmmm...book or iPad?

We are very excited to be heading to the Outer Banks of North Carolina over Memorial weekend to celebrate the wedding of our nephew.  Lucy is going to be the flower girl, so we've been practicing wearing the dress and shoes...fingers crossed she cooperates on the big day!!

Other than that, Lucy and Jason have been spending a lot of quality time together lately, as we take a few weeks off from having a nanny.

Can you find Lucy?  (She's hiding in the cabinet - a new, favorite place to hang out!  If you look closely, you can see her little fingers, hahaha!)

RNC Test and our Little Ray of Sunshine!

We've had a busy week!

On Friday, Lucy had her RNC (nuclear cystogram) to look at her bladder to kidney reflux.  It's the test that requires a catheter and for her to get her bladder filled up a couple of times so they could take continuous pictures of the anatomy.  She also had to lay still for about 20 minutes while the test was being done - she did great (all things considered).  We'll get the results when we meet with her urologist next week.  Since she has always had only a very mild case of this type of reflux, we are anticipating no major concerns.

Lucy is truly a ray of sunshine to everyone she meets.  She is a pretty friendly kid and loves to say "Hi!" to people that come across our path in public - grocery store, hospital waiting rooms, at the park - anywhere!  While we were in the radiology waiting area for this particular test (for over an hour - don't get me started!)  Jason and I watched her walk around the room, greeting everyone and waiting for them to say "hi" back to her and were so proud of the smile that she could bring to all of their faces - to her, it doesn't matter if they are old or young or well-dressed or in sweatpants or black or white or Indian or Asian - she treats them all equally.  What a great reminder from an almost 2-year old.

She made a friend while we were waiting and they helped each other pass the time:

Last weekend, we took Lucy to the mall for the first time.  I know, I can't believe she's never been to the mall, but it was just never a place we ventured as a family!  I had no idea there were so many entertaining things to do at the mall for kids!

Riding in the rent-a-car and sneaking sips of daddy's cherry Icee

Six Lucy's?  I don't know what we would do!!

Riding the carousel with daddy - big hit!

And finally, we are officially a 3-car family!  Lucy's new wheels are courtesy of our next door neighbor, whose kids have outgrown this car (although interestingly enough, now that it lives in our garage instead of theirs, they come over all the time to ride in it!!)

Posin' and Cruisin'

Esophagus Dilatation #16

The hat that Lucy wanted to wear to bed.

We have been at this whole dilatation thing for over a year now.  Last week's procedure was a rough one for our little miss Lucy.  She was at the tail-end of a cold so had a cough that required extra anesthesia to calm down, then they gave her a nebulizer (albuterol) to combat any post-operative wheezing.  Not sure exactly what in that cocktail made her cranky, but something definitely did!  She had a tough time waking up and when she did, she was very restless and her stomach was off for a few days afterwards, poor baby :(

However, the dilatation did yield good results, taking her all the way through the three levels of #12 with minimal irritation, so that's great!  She definitely has her energy and appetite back (she ate 2 helpings of Jambalaya tonight - what 2 year old likes Jambalaya?!?), so we are very happy to have her back to normal.

This week she has an RNC scheduled to look at her bladder reflux to her kidneys, which involves putting a catheter in, filling up her bladder with dye, letting it empty and repeating the process.  None of us are looking forward to that procedure, as it will likely be pretty uncomfortable for her.  This particular diagnosis has always been rated very low risk for her and we tend to forget she even has it.  We are hoping that she will grow out of it and that the tests will show it has improved since her last RNC (which she had when she was still in the NICU).

Today's pictures touch my heart because I am so happy that Lucy is able to know her relatives and spend time with so many of them!

Reading with Great Grandma Los

Bedtime treat!  Cousin Preston helped with bath, diaper AND story time!!

Happy Easter!

We enjoyed a lovely spring day today, celebrating Easter with family and being reminded of God's redeeming love for us.  We hope that you were able to do the same and for those of us in Minnesota - how great did the mid-70's feel?!?!

Finding her first egg...

Figuring out there are treats inside the eggs!

Egg Hunt detour to climb a small snow hill

Bbrrr...cold on the hands!!

Lucy has her next dilatation on Wednesday - prayers are welcome!!

Play, Play, Play!

"Play, Play, Play" is the chant that Lucy repeats during the entire 5 minute car ride to play group on Thursdays.

I love this picture - she looks so peaceful - enjoying the sun on her face and the gentle sway of the swing! :)

"Popeye face"...daddy's latest teaching! (Excuse the post-nap hair!!)

Wagon ride - she always has to hold on to something during our walks!

Last year...she looks so tiny!!

Look how much she has grown compared to last year!!

Hard core playing has been a theme around here lately - with as much outside time as we can get in!  Springtime in Minnesota is so great!!  Many, many times a day she will bring us a pair of shoes and ask to go outside. (It doesn't matter who the shoe actually belongs to...in her world, it would be perfectly acceptable for mommy to take her outside in daddy's brown dress shoes or for daddy to wear mommy's heels to play outside with her!!)

Reading is still a very popular activity, especially when we get a new book, like this Minnesota version of "Goodnight Moon"

In addition to brushing her own teeth, Elmo's teeth routinely get brushed as well (In case you are wondering, no, Elmo doesn't have actual teeth!)

Hints of Spring...

We are starting to feel like Spring will make it to Minnesota!  Yesterday, Lucy was able to play outside for over an hour without a hat or mittens on!  We had lots of neighbor kids stop over and it seems like everyone has grown over the winter!  Lucy LOVED being able to hug the neighbor's cats again and "play" ball with the big boys. :)

Chasing her shadow! (And for those of you not in Minnesota, yes we still have that much snow on the ground!)

Cousins Ollie and Remy picked out 10 matchbox cars for Lucy to take home last time we saw them at Grandma and Grandpa's house and she plays with them everyday - Jason and I have to be careful where we walk, lest we injure our feet on a runaway car!!

Lining up her cars in the windowsill

We are coming up on semi-annual appointment time so have some doctor's visits planned in the next few weeks - another dilatation in a few weeks, a urology follow-up, and an RNC (Radionuclide cystogram) - yuck! - which will check her Vesicoureteral Reflex (from the bladder to the kidneys).  She will have to have a catheter for this one, and they don't typically sedate children under 3 for these, I've been told, so I am not looking forward to that one.  I tried REALLY hard to get them to schedule this when she was already put under for her next dilatation, but was not able to - I guess the machine is broken at Children's St. Paul location (don't even get me started about how much money we pay in hospital bills and not understanding how they can have one machine in an entire hospital and it can be broken and they are unable to fix it for 3 months.  Where is our money going?!?!?!?!?)

Other than that, we have been staying healthy and are enjoying some downtime in Jason's travel schedule while we patiently wait for Old Man Winter to leave for a few months!!

Oh, and the best news of the week?  Lucy is down to two 2-ounce feeding through her feeding tube!  I am anxious to have a weight check at the doctor in a few weeks to see how well she is maintaining her growth without these supplemental calories.  Slow and steady progress, right?

Not sure how well videos work on here, but this is Lucy enjoying her favorite activity last week at her Thursday night play group - trampoline!  She gets some pretty good air!!