Winter Fun!

Our neighbor's giant snow sculpture!!

January in Minnesota can be a bit dreary...the holidays are done, it's inevitably below zero for several days in a row and bright sunshine usually means colder weather...so we spend a lot of time indoors. But when it warms up, you better believe we take advantage of it!

Family day at the Minneapolis Institute of Art...making a clay puppy!

 How Lucy really feels about the museum...perhaps a bit young to appreciate art?

Indoor fun - Water + Food Coloring!

It's never too cold for Ice Cream...Lucy chose Pistachio (haha!) but spit out all the nuts...

Why WOULDN'T you wear a snow white dress with your boots and winter jacket?

Happy New Year!

Happy New Year!

Wow!  Can't believe what a year it's been for little Miss Lucy!

Here are some highlights:

 - Lucy had 3 esophagus dilatations...that is 1/2 of what she had in 2014...praise God for his amazing healing in her life!

 - We took Lucy to the theater for the first time - both the movie theater and live theater!

 - As a family, we got to visit Colorado and see some of our favorite nurses and doctors from when Lucy was in the NICU - as well as some fellow patients!  It was a happy, healing visit for us all.

 - Lucy got to take countless trips to the park and play without her feeding tube getting in the way.  She also got to go swimming in many pools and lakes with no feeding tube - how awesome (and easy!)

 - We took a road trip to Oklahoma with cousins Ashley and Preston...that's a long time in the car!!

 - Lucy turned 3 on Father's Day and celebrated with cake, ice cream, balloons, a St. Paul Saints baseball game, family and friends and even Grandma Jeanette all the way from Virginia!!

 - We also went to Michigan and celebrated my cousin, Ben's marriage to the lovely Charissa

 - Lucy started PRESCHOOL (and is doing great...even with the eating snack part - mommy's biggest worry!)

 - We raised money for hydrocephalus awareness and participated in a local Hydrocephalus Association walk at the Mall of America

 - Lucy got to go Trick-or-Treating and dressed as Snow White

- Lucy had her first dentist appointment

- Lucy no longer wears diapers - Yay for potty training!

- Lucy had, arguably, her best year ever!!

2015 was an awesome year and we expect 2016 to be full of fun and happiness and exciting things as well!  Happy New Year to you all!

"Be joyful in hope, patient in affliction and faithful in prayer" (Romans 12:12)

Here are some of our favorite pictures from 2015:

Merry Christmas!

Merry Christmas to all our friends and family.  We had a wonderful December leading up to Christmas and Lucy really got into Christmas this year - playing with her Baby Jesus, reading the Christmas Story, figuring out what Santa was going to bring her!!  What a fun age to be at Christmas (and really always, ha!).

We FINALLY got a few inches of snow here in Minnesota, so we can go sledding down our very gently sloping yard, throw snowballs at the garage door, eat snow and then warm up with hot cocoa, which Lucy has discovered this winter and she LOVES it!

I got to go to preschool with Lucy and make this lovely gingerbread house!

Matching pajamas from Grandma for Lucy and "dolly"

Hot Cocoa to warm up after playing in our new snow!

Esophagus Dilation #23, Eye Doctor and Dentist, Oh My!

A visit with Santa.

We have had a busy few weeks with appointments for Miss Lucy!

Just after Thanksgiving, she went to the dentist - not her favorite place, but she was brave enough to let them check her teeth out and get fluoride painted on again - maybe next time we'll finally get some X-Rays?

Last week we went to the eye doctor for her annual check-up.  Another one of her not favorite places...she doesn't like the blurry vision when her pupils are dilated.  She did great, though, telling the techs what all the pictures were and letting the eye doc look at her with his silly hat on!  Still no concerns with her vision and the doc didn't see any indication of optic never swelling or damage (the main concern in kiddos with hydrocephalus).  Praise the Lord for another good report!

Then on Friday, we went to the U for Lucy's 23rd esophagus dilation.  I cannot believe she's had so many.  It was definitely her WORST time for accepting the anesthesia mask - she had to be held down by me and a few nurses because she did NOT want that mask on.  Thankfully they let me be right next to her while they are giving her anesthesia so I'm the last person she sees before falling asleep.

The results were good...if you remember, it's been 6 months since her last dilation, the longest by about 5 or 6 weeks.  The GI doc said it was much easier to get his scope down (a size 10), so he feels that the tissue is growing back together slightly slower than it used to be (very slightly, but we'll take it!).  He dilated her to around a 15 again and recommended we try to wait 9 months for the next one.  Worst case scenario, her eating regresses and we have to bring her in earlier, so pretty low risk compared to such frequent anesthesia!  His short-term goal for her is to have to do no more than annual dilations while she is so little.

Her recovery was pretty good - faster than last time for sure...she felt better once she threw up after waking up and we were out of recovery in around 2 hours  (a near record for us!).  By Saturday morning, she was back to herself for the most part...perhaps even more hyper than usual, but that could be attributed to the donut run her and Jason went on that morning? :)

We are so proud of our little girl and her strength, resilience and general good attitude (with a few 3 year old fits sprinkled in!).  What a special gift to be her mommy and daddy.

We have managed to have some fun in between all these appointments - visiting Santa, going Christmas shopping and visiting Lark Toys in Kellogg, MN.  If you are local and haven't been there - we would highly recommend it!

Thank You for your continued prayers and support.

Celebrating successful Christmas shopping for frozen yogurt and LOTS of sprinkles!

Hanging on tight to the fast carousel at Lark toys - the animals are wooden and all hand carved!

Happy Thanksgiving!

Lucy's Thanksgiving turkey - this was the first day...by last week it was full of feathers! (also in case you are wondering, Tiny baby and Tiny baby are her 2 favorite dolls...yes we are terrible at naming things in this house, haha!)

Happy Thanksgiving to you and all of your loved ones.  We hope you had an opportunity to enjoy the recent holiday...I know that we did!

It was a busy month leading up to Thanksgiving...In the middle of November, I was in Prague, Czech Republic for work for a week...Lucy wanted to come with! :) But she had a great time with daddy and then grandma and grandpa for a few days.

Mom...PLEASE take me in your suitcase...I would love Prague!

We had parent/teacher conferences with Lucy's teachers and OT at school.  Overall she is doing great, although there continues to be areas of concern some of her speech patterns and fine motor skills.  The meeting reinforced for us that Lucy is at the right place for her development right now and we feel blessed to have such wonderful teachers to help us along on her journey.

The day before Thanksgiving, Jason and I closed on the sale of my townhouse in White Bear Lake, which we had been renting out for the last several years.  Since the renters decided to move out and buy a place of their own, we decided to put it on the market and lo and behold...it sold!  We are beyond thrilled to no longer be landlords!!

For the Thanksgiving holiday, we went up to Silver Bay, MN to spend the holiday with my side of the family.  We had a wonderful time...eating yummy food, talking and laughing and swimming at the hotel (Lucy's favorite part, of course!)

Yay for kiddie pools!

Thanksgiving'ed out!! (about 5 minutes later she was face down in the pillows, sleeping!)

On December 11, Lucy has her next endoscopy and esophagus dilation - 6 months from her last one - isn't that amazing!  I'll post the update once we are through with the procedure and she is feeling good...praying for good results!

Hope you enjoy this holiday season...and the snow if you are in Minnesota or Colorado! :)

Happy Halloween!

I realize that it is the middle of November and we are just posting about Halloween...guess it's been busy around here!

Lucy had a great time on Halloween this year (pretty much anything would beat being in the hospital last year!).  She practiced Trick or Treating at our house in the morning and was ready to hit the neighbors by 6 pm!  She did a great job of saying "Trick or Treat" to everyone that opened the door and is STILL enjoying the candy that she got (and so are we!) It seems like some of the neighbors know her but not us, haha...she must be the social one in the family!

Even daddy got into the spirit this year and dressed up!!

Hope you all had a great Halloween and are looking forward to the upcoming Thanksgiving Holiday!

Wrestling Pose!

3 Years Home!

Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."

It is a joyous night in our house as we celebrate the 3rd anniversary of when Lucy came home from the hospital.  What a remarkable little girl we have.  It's been a wonderful 3 years, but especially uplifting in the past 12 months as Lucy recovered from having her feeding tube removed, made great strides in her overall eating and started preschool!

I am humbled at the plan GOD has laid out for our family and how we have been able to witness His blessings and healing in Lucy's life.

Meanwhile...Lucy's latest MRI was traumatic for her (as you can expect!).  They do a "Quick-Brain" MRI to evaluate her shunt performance, which required Lucy to be in the MRI "tunnel" for 10 or so minutes while they took a series of pictures.  She was NOT a fan!  If you've ever been in an MRI machine you know that it is tiny, bright and loud.  Lucy was strapped down with a blanket tightly around her arms and mid section and she had a strap around her head keeping that still.  I was able to be in the room with her and hold her legs/tummy and sing at the top of my lungs to TRY to keep her calm.  She did quite a bit of moving and wanted to be ALL DONE, but in the end, they got the pictures that she needed, so that's a relief!!  She even played "MRI" at home that night and put her teddy bear in a makeshift tunnel and role-played...it was pretty cute in a sad sort of way. :)

The results were very positive.  Her shunt appears to be doing its job and her brain, although still not "normal" looking (it never will be), is healthy and clearly functioning very well.  Her neurologist is happy to report that unless there are issues, she doesn't need another MRI for 2 years - YAY!  (Maybe she will have forgotten about this one by then?)  Lucy impressed him with her ability to read "Medtronic" on one of the tools in his office...since I work there she sees that word a lot. HAHA!!

Thanks to all for your continued interest and support in Lucy's journey.  She is such an amazing kiddo!  Here are a few pics of what we've been up to this fall:

Celebrating sweet cousin Dawson's first birthday, you know in our costumes, next to a turtle!

Ready for hockey season (this is what happens when mom gets busy at work and daddy takes Lucy to Target!)

Playing in the leaves!!