Esophagus Dilatation #14

Winter boots but no pants?!?!?

Well, we are STILL at a 10 on the esophagus dilatation size, but we are going to extend the time between dilatations from 4 weeks to 5 or 6 weeks.  Baby steps to the end goal, right?  As you can imagine, we are trying to be patient in the midst of this very long journey to Lucy's ability to eat "normally," but it is difficult!  Now that we have figured out what works for her from a food perspective and we rarely have issues with food getting caught, I need to remind myself to help her continue to expand her palate and try new things that we think she will be able to successfully eat.

Lucy LOVES getting to take trips in the car ("Go, go go" as she says!), so we feel a little bad when we take her to the hospital and she is so excited...but she does get to play with toys, meet other little patients and get loved up by all the nurses, so it's not ALL bad for her, I guess!

Helping me sort laundry?

Otherwise, she is doing great and we are holding on to the hope of warmer weather coming by playing on the slide in the basement, giving her monkey rides in the swing and relaxing in a nice warm bath at the end of the day!

Every once in awhile, Lucy will be VERY quiet in her room by herself - we usually find her reading books or admiring herself in the mirror!

Accessories!!

 Instead of boring you all with a weather report from Minnesota (it's been cold!), here are a few pictures of Lucy doing one of her favorite things - accessorizing!!

Enjoying breakfast in her sun hat

You can't really tell from this picture, but she has pigtails in her hair, two bows and a headband!

...and this is what happens when the pigtails come out!

Lucy has been loving her new big girl toothbrush (she gets to stand on a stool in the bathroom to brush her teeth) and practicing her letters this week...she even got to watch cousin Preston play basketball last weekend!

We have esophagus dilatation #14 on Friday and have high hopes for moving up to the next size after being stuck at 10 for a few months now.  Prayers are always welcome!

Trip to Virginia

Enjoying a brief Minnesota thaw!

Last week, we visited Jason's family in Southern Virginia for a long weekend.  It was nice to escape the Minnesota winter for a bit!  Lucy was a great traveler again - especially considering that Jason left before us so Lucy and I flew by ourselves on the way out AND we had flight cancellations, delays and missing bags to boot!  I'll spare you the details, but let's just say it was the WORST travel experience I've had (and I've flown a TON!) and everyone from the airline was super unhelpful which made things worse!  And to think...I booked a direct flight for us so this wouldn't happen! UGH!!

My very patient travel companion having a snack while we wait out ANOTHER flight delay

Here are some fun pictures from our trip:

Hanging out with daddy at the Virginia Duals Wrestling event

Entertaining herself at a restaurant (I know, I know, we shouldn't let her make such a big mess...but we did clean it up before we left!)

Hamming it up with Grandma!

Checking out the water behind Grandpa's house

Back in town, we are enjoying the weather when it warms up and getting back into the swing of our routine at home.  We don't have any doctors appointments until the her dilatation at the end of the month which is great!  I feel like Lucy learns at least one new word every day and she basically jabbers non-stop when she is awake!  She has WAY more energy than Jason and I have and loves, loves, loves to dance, listen to music, play her keyboard (which has an all-cat setting, so instead of piano notes, it's a "meow" - yep, just as annoying as it sounds, lol!)  Her favorite letter is "D" and she points it out often when she sees it (like EVERY "D" seat on the airplane!) and she has quite a long attention span for coloring - she's graduated from drawing lines to drawing circles now!

Stay warm and enjoy the calm of winter after the busy holiday season!!

Esophagus Dilatation #13 and 18-month check-up

Lucy had her 13th esophagus dilatation on Friday.  She did GREAT...probably her best recovery yet.  Within 30 days of every dilatation, we have to have a pre-op at her regular doctor's office.  Usually we have it the same week of the dilatation, but because of holiday scheduling, we ended up having it done the same day as her dilation this time, so it was an early start for us.  Jason was out of town covering a tournament so my mom and dad kept Lucy and I company for the day, which was a nice treat for both of us!  The doctor stuck with the three settings on the 10 series - he thought he could have gone to a 12, but wanted to be conservative, since with this type of procedure, being too aggressive can be more harmful in the long run, as it causes more scar tissue to develop.  It had not closed very much at all, even though we waited 4 weeks, so overall a very encouraging visit!

Meanwhile, Lucy's been loving food...to the point that we have transitioned her down to only three 2 ounce feedings a day through her feeding tube.  That is amazing to me!! We are hopeful that she will continue to gain weight at this level and eat and drink even more food without the feeding tube.  She has been drinking between 16 to 20 ounces a day, which again is a huge improvement for her, compared to the measly 4 - 8 ounces she was drinking orally just a few short months ago.  She basically eats what we eat - just ground up and mixed with a sauce or liquid of some type.  She's also able to eat a few different varieties of crackers for her, which historically were tough for her to handle. Her favorite treats are pumpkin bread and mini M&Ms...and yes, I love that she can eat "treats" now!

She does a pretty good job of feeding herself and is keeping much cleaner during meal time, thanks to an awesome smock my mom made for her to wear during mealtime!  However, some meals are better than others!  She's such a jokester lately, that it's hard not to laugh at her silly antics, which often catch me by surprise...I had no idea a toddler could have such a sweet sense of humor already!

Wearing her dinner bowl

This will give you an idea of the consistency of her food - and it took me 2 days of shampoos to get this out!!

We did not pose this picture - she literally balanced her spoon on her own head!

Lucy had her 18 month check-up with her doctor earlier this week and she is growing, growing!

Here are her stats:

Height:  31 inches inches (37th percentile)
Weight: 21 lbs, 6 oz (30th percentile)

Compare that to her 12-month appointment - what a big girl!  No wonder I think she's been looking so tall!

Height:  27.6 inches (10th percentile)
Weight: 18 lbs, 5 oz (between 10th and 25th percentile)

Happy New Year!

How can it be 2014 already?  Here is a recap of Lucy's year:

 - I took a VERRRRRRRRRRRRRRRY long road trip to visit my daddy's family in Virginia
 - I went to my first wrestling event - the Virginia Duals!
 - I learned to drink out of a sippy cup, even though I never really took a bottle
 - I got to visit Duluth with my mommy and daddy
 - I got a brand new bedroom in our new house
 - I learned to crawl!
 - I turned 1 and had a fabulous party!!
 - I went to my first Twins game at Target Field
 - I participated in the Walk for Hydrocephalus
 - I spent a week at the lake with mommy's family
 - I learned to walk!!
 - I went to the Minnesota State Fair
 - I visited "the cabin" on the mighty Mississippi River in Wabasha
 - I took my first airplane ride...all the way to Washington DC!
 - I ran my first race - the Toddler Trot at the Minnesota State Capitol
 - I went Trick or Treating...dressed as a lion
 - I don't need a feeding pump anymore - just a bolus right into my tummy!
 - I got my first haircut
 - I got to meet Santa and sit on his lap
 - I took my second airplane trip...all the way to California this time!
 - I had 12 esophagus dilatations
 - I visited the doctor between 40 and 50 times (mommy has lost track!)
 - I had the BEST YEAR EVER...I can't wait for 2014 - I already have some fun things planned!

And some of our favorite pictures from the year:

2013 was an amazing year for our family and we are so, so thankful that Lucy has made such wonderful strides this year.  As Romans 12:12 reminds us, "Be joyful in hope, patient in affliction, faithful in prayer." and we will continue to claim this verse in 2014.

As for today, Lucy has been sick over the holidays - bad cold, stomach flu and cutting 4 teeth.  I am constantly amazed at how well she handles being sick and am so grateful that she recovers well without having to go to the doctor or be hospitalized for it.  She is definitely on the mend and has been running around the house quite hyper lately - she has so many new toys to play with she doesn't quite know how to spend her time.  Jason and I got her a play kitchen for Christmas, which she is a huge fan of and she's been making lots of cookies and coffee for us over the past week (seriously - this thing has a coffee maker that uses coffee PODS - like our Keurig!  I told Jason that if she were just a little taller, she could make me a cup of real coffee in the morning - she already knows how to use the machine!!)  We have her next esophagus dilatation on Friday - it will be 4 weeks since her last one, so a good test to see how well her last dilatation lasted.  Prayers are welcome and we will update you all on how it goes.

Until then, Happy New Year!!  Here's to a wonderful 2014!

Merry Christmas!

Pure Christmas Joy!

From our family...to yours!  We hope you had a very Merry Christmas and are enjoying some down time for the holidays.  We have been blessed to spend time with my family over this Christmas and have plans to visit Jason's in a few short weeks!  Lucy enjoyed the time with family and the presents very much.

Showing off her new tractor

Chatting with cousin Jackson

Reading the ingredients on her fruit packet.

Trying on the elf hat!

Traditional picture in front of the tree.

Look how much she has grown since last Christmas!

Saying Thank You in a BIG way!

First time feeling the Pacific Ocean!

Jason, Lucy and I had an amazing opportunity to travel to Santa Barbara this past weekend and thank all of the people who made Lucy's shunt!  Medtronic's neurosurgery manufacturing facility is located there and we were invited to take a plant tour to see how shunts like Lucy's are made and speak as guests of honor at their Holiday Party.

It was an AMAZING opportunity and we had such a great time (I mean, not counting the sometime crabby toddler who was adjusting to West Coast time and dealt pretty well with an 8-hour travel day).  We got to walk on the beach and introduce Lucy to the ocean and enjoy 70 degree weather and have family nap time and get away from the hustle and bustle of the holidays for a a few days.

Visiting the zoo - best seat in the house!

Making friends? (And this mama is VERY glad there is glass between those two!)

And, best of all, we had an opportunity that very few families with hydro kids get to do - we got to personally meet, talk to and thank the people that contributed their time, labor and expertise to making Lucy's shunt - a tiny, implanted device that has changed the course of her future for the better in ways we will never know! It was an awesome, humbling experience and one that we were so blessed to have!

Watching the kids at the skate park and wishing she could join them!

The Holiday Party was a fancy, black tie affair and Lucy was definitely the hit of the party!  She was the youngest by a good 15 or 20 years and had probably the cutest dress there!  She smiled, danced and charmed her way into the hearts of every one of the 300+ guests at the event and I am sure that they will not soon forget how special she is and how important their jobs are to improving the lives of kids like Lucy.

Getting all dressed up for the Holiday Party! (And we didn't even get one picture of her in her adorable party dress!)