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!!

Happy 4th of July!

This year was Lucy's 4th Fourth of July...can you believe it?  Remember when she was so tiny that first year? I remember how nervous I was for the nurses to take her out of her little bed and handle her so much...I was sure some tube was going to come or something!

We spent 4th of July week/weekend saying Good-Bye to Grandma Jeanette, who went back to Virginia, and enjoying the beautiful northern MN weather.  We even entered a family fishing contest at my parent's lake house!!

Swinging with Grandma Jeanette

Lucy has her well-child 3 year visit next week so we'll see how she measures up from a percentile perspective.  We've been getting lots of comments about how tall she looks, so we'll find out if she is actually tall for her age or not!

Swimming with Daddy!!

Teaching cousin Dawson how to swim