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!!

Hydrocephalus Walk

Ready to Walk!!

We had the wonderful opportunity to participate in Minnesota Chapter of the Hydrocephalus Association walk at the Mall of America a few weeks ago.  Some of my family joined us there and we got matching shirts for the occasion!  Actually, we had this whole thing planned for LAST year but it happened over the weekend that Lucy was so sick, right after she got her feeding tube out and right before she was in the hospital getting it put back in.  So, we boxed up the shirts and packed them away until this year!

What a great event!  We had a houseful of people the night before the event (and 2 dogs!), but managed to get all 9 of us up and out of the house before 7 am!  We got to meet some fun characters, had brunch all together and then Jason and I took Lucy to Nickelodeon Universe for some rides.

Carousel Ride with Daddy!

Meeting Dora the Explorer!

We are so grateful for these types of organizations that help raise money and awareness for hydrocephalus, arguably an underfunded condition that affects millions!  If you would like donate in support of this, please visit our fundraising page at http://hawalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129998&supid=386062722 to donate online.

It has been 3 years since Lucy had her shunt implanted and I really feel like that surgery of all of hers, is the one that changed her life...she got healthier, more alert and all around BETTER after that surgery.

Surgery Day - 3 years ago!

This week, we go to her neurosurgeon for a brain MRI and followup to make sure her shunt is still doing its job.  Prayers for wisdom for the doctors, comfort for Lucy (she'll be awake for the MRI :() and overall continued health for Lucy is always appreciated!

We'll keep you updated on the results.

Highlight of Lucy's Day? Meeting Elsa and Anna from Frozen (perhaps the highlight of her first three years of life, actually)

First Day of Preschool

Excited Face!

Lucy started preschool last week!  I cannot believe that this sweet little girl, who three short years ago was in the NICU having surgery and one short year ago was BACK in the hospital trying to get that feeding tube out went to preschool all by herself.  She sat "criss cross applesauce" with the other kiddos and listened to a story, she ate snack (and it went fine!), she made art to bring us and had a great time.  So proud of our little 3 year old!!

Pancake shaped like a "P" for breakfast on the first day...

GIANT backpack...she chose Doc McStuffins this year, which is appropriate since she loves her doctoring kit at home!

The first of MANY first day of school pictures!

2014

2012

2013

Summer is coming to an end!

Cloud gazing with mom

Let me tell you that the end of summer is rough in Minnesota...we all know that fall is Ah-Maze-Ing here, but that the snow will soon fly and it will got C-O-L-D! :(

But, until that time comes, we are making the most of the beautiful weather of September.  We celebrated with one last fishing trip on the lake, a trip to the splash park, a few special trips with mom and Lucy while daddy was gone for 10 days and of course...getting ready for preschool!

What a change from a year ago, when Lucy was in the hospital while the doctors tried to figure out how to stop her feeding tube site from leaking.  In case you are wondering, we are VERY glad we made the decision to switch her GI care to the University of Minnesota and I hope to never be in that situation again where I feel like her care team isn't doing everything they can to solve her immediate health issues but are putting their arrogance and text book solutions before actual patient care....I could go on a rant here for awhile, but I won't...because that is all behind us and we've learned important lessons along the way!!

Lucy is doing great.  We have a few big events coming up...preschool starts tomorrow.  Lucy will go two mornings a week for about 2 1/2 hours each to a school district Early Childhood program.  Her class has about 15 kids total in it and she is one of a handful of kids that has a special education teacher assigned to monitor her progress.  Because of her hydrocephalus diagnosis, learning delays are probable so she qualifies for special education programs through the school district.  In addition, we have a health plan on file with the school because of her eating restrictions.  There is a snack every day and I am most nervous about her eating while we are not around...will she be able to handle whatever is for snack?  Will she feel singled out if the teacher tells her she has to eat the snack that mommy packed for her instead of what the class is having?  It's hard being a parent and letting your kids grow up and be independent!  I think it's impossible to NOT want to protect them from everything that we can - especially when there are extra special needs involved.

We are also participating in the annual Walk for Hydrocephalus this year...more on that in a future blog!  Our local community has already raised over $30,000 towards hydrocephalus research!!  If you'd like to donate on Lucy's behalf...here's the link to our fundraising page: Donor Pledge for Lucy London.

In the meantime, here are some pictures from our recent fun:

"Doctoring" her baby at AppleBees

The local Splash Park!!

Any fish in there, Lucy?

YAY! Reunited with daddy after a long trip away.

The Great Minnesota Get Together

Every year, many, many Minnesotans come together for the MN State Fair...a celebration like no other in this great state.  The weather usually rallies so that it is hot, muggy and sticky for a good portion of the 10 days that the fair goes on.

We've taken Lucy the past 2 years, so decided to go again - this time on a weekday when it was (somewhat) less busy.

We decided to take a park and ride bus, which was super exciting to Lucy, who loves buses!  We drank lemonade and ate cheese curds, pet some pigs and cows and goats, took a tour of the "Little Hands" farm where Lucy got to pedal a tiny tractor, watched Princess Kays be carved out of butter and of course, crashed pretty quickly when it was bedtime!

Waiting for the bus to pick us up.

Brief nap in the Dairy Barn while waiting for some ice cream!!

Bucket full of goodies at the Little Hands Farm!

Visiting the mascot from mommy's old work!!

Back on the bus...waving good-bye to the fair for another year!

Vacation to Michigan

Family Pic!!

We've been fortunate enough to have a super fun, super busy summer and get to go to some pretty cool places.  Last week, we spent some time in the Upper Peninsula of Michigan with some of my family and then went to my cousin's wedding in Grand Rapids, Michigan.

Lucy's favorite parts were playing in the lake, riding the ferry to Mackinac Island, eating Cheez-Its and getting to play with cousins Ashley, Preston and baby Dawson for a whole week.  (Oh and of course dancing at the wedding!)

Skipping Rocks with Daddy into Lake Huron

Another outfit to get full of sand and lake water...

 

Loving the wind on the ferry back from Mackinac

Hiking to the waterfalls

Eating Fritos at Ben and Charissa's wedding

3 year Checkup

Earlier this month Lucy had her 3 year old visit to the doctor.  All things considered, she is doing great!!  Here are her stats - we didn't get a great height on her (according to the nurse, she had shrunk an inch since her prior visit), but we DO know that she grew over 3 inches since last year, according to our home measurements!

Weight: 31 lbs (just over the 50th percentile)
Height: 37 inches (about the 45th percentile)

Compared to her 2 year old stats, she evening out on the growth chart!!

Weight:  24 lbs, 11 oz (22nd percentile)
Height:  33. inches (49th percentile)

We've been busy enjoying summer...it's been so much fun this year without Lucy's feeding tube.  We are so much more free to pack up and go without worrying about an extra bag of medical supplies for when she leaks (which she inevitably ALWAYS did!).  I am not worried about her getting sand or lake water in her site and her core muscles definitely seem to be stronger.

We are ready for a family vacation and Jason's birthday in August, then thinking about preschool in September!!!

Bravely feeding the sheep at the Little Falls Zoo

Play date at Long Lake

Starting out Sunday morning slow...paper and coffee (well apple juice for Lucy)

Safety first!!