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!)

Esophagus Dilatation #12, Cardiology Visit and Meeting Santa!

Mama - please come get me!!

Lucy had her 12th esophagus dilatation on Friday.  These are, unfortunately, becoming so routine it doesn't seem like I have much to share about it.  The docs were able to get her through the 10's again (same as last time).  He seemed really optimistic about her progress, even though it's slow, he feel very confident that Lucy is on the right track.  Her recovery was pretty much standard, but she did have a very fast pulse for awhile - not exactly sure why.  It could've been because her IV was bothering her or her esophagus, so she got some Tylenol before we went home and then she was good to go.

Climbing - one of her current favorite activities

Earlier in the week, we had her one-year follow-up with cardiology.  The doctor basically walked in the room and told us that he could tell she looked great!  We didn't even have to do any EKG's or echo tests or anything, which was great!  I was geared up for a really long appointment, but it took us less than 30 minutes!  Lucy even came home with 2 stickers, which she thought was pretty special!  She still has a slight VSD (hole in her heart), but nothing of concern at this point and it will not likely cause her issues as she gets older.  We will continue to monitor with cardiology annually.

Yogurt face!

By Saturday, she was ready to brave the cold with us (for all you out of staters...it's been COLD here in Minnesota - lots of below zero days!) and go meet Santa!  We took her to the annual Children's Holiday party at my work.  She had a blast watching all the kiddos dancing and listening to the music, she got to spin a giant Price is Right wheel and won some stickers and she got to sit on Santa's lap (she didn't love it, but what one year old like sitting on Santa's lap?)

So, it's been a busy, busy week but full of fun, holiday treats and God's blessings!

Spinning the big wheel - if you know Lucy you know this girl loves the Price is Right!!

Whose lap am I on?

Happy Thanksgiving!

So I realize it is a few days past Thanksgiving, but we have so much to be thankful for I wanted to post a Thanksgiving blog anyways!  I think she is officially to the age that taking a picture is very difficult!  She does not sit still very long!!

For example, I am sure she was in this picture when I pressed the button to take it!

In addition, I am sure the turkey was in this picture with her when I took this one!!

To start out, her eye and ear appointments last week went GREAT! Her hearing was good, better than her previous visit last spring, so we will go back in 6 months to continue to monitor that.  Her sight was also good and we only have to go for annual check-ups for that!  With hydrocephalus, it often puts pressure on the optical nerve, causing sight problems so it is definitely monitored closely.  In addition, and something we didn't know is that VACTERL association also often causes eye issues - none of which Lucy was currently showing signs off.  We were over the moon relieved to have two more appointments behind us - both with such great news.  In fact, at the eye doctors, we heard a phrase that we rarely hear "...normal for her age." Yea!

Lucy:

I am so thankful to be your mommy!  I am thankful that daddy and I chose to give you life.  I am thankful that you are using your feeding tube less.  I am thankful that your hydrocephalus is not as severe as we were originally told.  I am thankful that you are sitting next to me coloring right now and are getting so independent.  I am thankful that we could spend Thanksgiving with your grandma and grandpa, aunts and uncles and cousins.  I am thankful that we have access to health care that will continue to help you get better.  I am thankful that God chose to send us such a wonderful little girl!!

Happy Thanksgiving to all!!

I am also thankful that you have such a fun daddy to play with!

One Year in Minnesota!

Lucy's selfie - she has discovered how to use the camera on daddy's phone.

This week, we celebrated one year back in Minnesota!  I cannot believe we've been here for a year - and it has definitely been a busy 12 months!  When we moved from Denver last year, Lucy was 5 months old and had only been home from the hospital for a few weeks.  Now, she is a bundle of toddler energy and is getting to be such a big girl.  Instead of calling us "mama" and "dada," She has taken to calling us "dat-EE" and plain old "Mom" - it's the cutest thing hearing her call for "dat-EE" as she looks all over the house for Jason!

This picture was taken a few days before we left Denver last year.

Today I gave her a haircut - her first (well, technically her second if you count the area that had to be shaved for her shunt placement :( ).  Nothing fancy - just a few trims on the sides and back where she still had her original hair that was quite a bit longer than other places.  I mean, all kids have weird hair until they get a little older, right?  In any case, I was pretty cautious, but if her hair looks weird next time you see her, you can blame me!

While cutting her hair, we decided to have her sit on the bathroom counter, which soon ended up as the bathroom sink, which soon ended up as her trying to bathe herself with her clothes on!

In the sink, fully clothed and turning the water on!

Clothes (mostly) off - still happy as a clam to be able to play in the bathroom sink!

This week we have ears and eyes checkups (both notoriously issues for kids with hydro)- we'll post with results later this week!

Esophagus Dilatation #11

Throwback photo from last year!

Lucy had her eleventh esophagus dilation this week!  As always, she did great and we actually made a little but more progress than we have in past procedures!  She got all the way through the #8's and to the third level of #10 without too much resistance.

The anesthesiologist and nurses were very good about letting us tell them what works best for Lucy.  (When we tell the docs no narcotics, because she gets too sleepy, they are very hesitant to agree.  We've been told that if the chart is checked and they do a procedure on a baby with no narcotics, it will get flagged or something.  I don't know if that is true or not, but they are always like, "are you sure?").  In any case, it seems to keep getting easier for her (and us!), even though she seems like she is starting to remember it from time to time, as she cries when we get to the operating room every time! :(

Other than that, we don't even have many new pictures to share this time!  We've been busy enjoying outside when we can, getting ready for Thanksgiving and Lucy definitely keeps us entertained!  Here's a classic picture of what I find when I get home after Lucy and daddy have been playing together for awhile - one sock on, one sock off, cushions on the floor and the TALLEST tower possible (built by Jason, not Lucy!!)  Crazy in love with both of them!!

Learning New Things

Cheering on her favorite football team!

Lucy's been busy learning all sorts of new things and seeming so grown up!  She's been into "table time" during the day, when she plays with markers, colors and stickers and even colored a birthday card for her Grandma Jeanette this week!

Showing off her artistic skills!

We had a swallow study last week.  It felt like a total waste of time to us.  The feeding clinic and ENT docs recommended it to ensure she wasn't aspirating - which we feel pretty confident she is not, since she doesn't cough when she drinks and always has really clear lungs when they listen to her.  In any case, against our better judgement, we schedule one for her.  During a swallow study, Lucy is expected to sit in a high chair enclosed on three sides with X-Ray equipment while we feed her barium-filled food and beverages.  She HATED the chair right off the bat and pretty much cried through the whole thing.  It was tough for the techs to get any good pictures of her swallowing, but she didn't show any signs of aspiration when it was done, so it was considered a success.

Getting ready to go to grandma's - tights, shoes and a bow!

Her eating has been so GREAT lately!  We've figured out which consistencies she can handle and what kind of foods she likes and she has figured out how to pace herself.  She still has times when she gets a chunk of food that gets stuck or eats too fast and spits everything up, but overall it's gotten much, much better.  We haven't used the Feeding Pump in over a month (just the bolus syringe) and it's so much quicker, more convenient and overall more comfortable for all of us.  I finally feel like she would be OK without a feeding tube, which I honestly couldn't say until recently.  Now that doesn't mean she'll get rid of it any time soon, since she still takes about 1/2 of her calories through the feeding tube, we can definitely can see that she WILL get there!  Her current favorites are pasta with tomato sauce (we grind up the cooked pasta so it's in really small chunks), pureed sweet potatoes, peanut butter and crunchies (long-standing favorite)

Not sure if she should eat the crayons or draw with them...

She continues to love hanging out with people, playing dress up and watching herself in the mirror, reading books, watching "The Price is Right" and eating snacks.  We moved her slide into the basement since it's getting cold out, so she thinks it's a huge treat to be able to slide over and over and over again when we are downstairs with her.  We're working on having her feed herself more consistently - some days are better than others - and we've transitioned from her high chair to just a booster seat at the table - such a big girl!

We have esophagus dilatation #11 this week - prayers are welcome!!

Happy Halloween!

Our fearless lion!

Checking out her Halloween trick or treat bucket.

Off and running...again!

I think Lucy enjoyed Halloween - even if she can't eat any of the candy yet!!

Esophagus Dilatation #10

Playing dress-up - such a girl!

 Lucy had another esophagus dilatation on Tuesday.  That was #10 for her - can you believe it?  She did great - charming all the nurses in pre-op and recovery and overall just having a great attitude about the whole situation.

The doctor (not her normal GI doctor, but one we have seen several times) said that we are at a bit of a plateau with dilatations.  Her esophagus is not growing together nearly as much as it was in the beginning, but they are unable to make much progress beyond the number 8 balloon that they have been using that last few times.  She essentially has a ridge of scar tissue that is very stubborn and difficult to break through.

The doctor was not willing to commit to when a different tactic might be taken, but we may need to consider something else (like clipping or lasering the ridge of scar tissue).  Right now, they are focused on getting her esophagus to stay open through these ongoing dilatations and determining if we will eventually make the progress we need to or not.  So, while we do not think that it will happen any time soon, we need to start preparing for a more invasive procedure to make more progress. :(

Please, please pray for God's healing for little miss Lucy!

Meanwhile, she continues to thrive as a toddler - running up and down the hallway at home, giggling instead of going to bed at night, watching herself in the mirror and visiting the neighbor boys when the weather permits!

A year ago today...we took Lucy home from the hospital!!

Outfitted for fall!

Today, Lucy is 16 months old and she has been home from the hospital for a year!

Wow, how much has she grown and changed in the past year!!

On the not so great side, when we took her home last year, I didn't in my wildest dreams think that she would still have a feeding tube, which is still just such a bummer for us.  The progress we are able to achieve with her esophagus size seems so slow that at times I can't even imagine a day when she will eat a sandwich (or even an M&M, for that matter!)  It's hard for Jason and I and heartbreaking at times, especially days like tomorrow when she has to go in for ANOTHER esophagus dilatation (#10 this time).

On the flip side, I also couldn't imagine how much I could love her.  She is such a fun, incredibly strong little girl and I love, love, love being her mama!  Her development has been so stellar that at times we forget that she has hydrocephalus.  Her tastes also continue to change and develop and it's been a fun challenge to keep up with pureed foods that she likes, are full of good calories and are a texture she can handle.  True to her mama's tastes, her most recent favorite is pumpkin bread!  She can handle small bites of it and loves to eat it along with me.

Bringing Lucy home last year.

From an eating perspective, we have hit a bit of a plateau.  She continues to eat and drink between 300 and 400 calories orally and get the remaining 400 to 500 calories through her feeding tube.  She has been true to her toddler individuality lately and has been a bit of a picky eater.  If we can find something she likes, she'll eat great.  If it's blah or not a taste she is a huge fan of, she'll pass and every spoonful is a struggle for us.  However, she'll eat baby crunchies (like puff Cheetos) all day long!  She has also been drinking a lot more lately, usually at least 6 ounces per day and sometimes up to 10 ounces.  It wasn't that long ago that she would barely drink 2 or 3 ounces a day, so this is great progress for her.

We have switched from using her Feeding Pump to feed to her to using a bolus to feed her (think over-sized syringe that can hold up to 2 ounces of liquid).  This drastically cuts down on the time she has to sit still while we feed her, as we can bolus 2 ounces of liquid into her feeding tube at once.  Basically, we take the bolus syringe and attach it to her connector tube and let gravity push her Pediasure formula into her tummy over the course of a few minutes.  We do this twice at each meal and it takes minutes instead of a half hour at a time, like her pump took.  It's wonderful to be able to speed up the feeding process and not have to use her pump and bags and an IV pole all of the time.

Checking out a restaurant menu

Whenever we go out to eat (which is rare!), we try to order off of the menu for Lucy.  She usually ends up with soup, mashed potatoes or yogurt.  Not much in the way of pureed foods on most menus!

We will have another swallow study for her in a few weeks, to see if she aspirates at all when she eats/drinks and to take another look at what happens in her esophagus when she swallows.  We also have cardiology follow-up scheduled and need to make eye and ear appointments too.  Ugh!  Our summer reprieve from doctors has ended for awhile, I guess.

Chilling for the briefest of moments in the pillow fort we made

It is impossible to make sense of everything that this life brings to us and as we try to make sense of it, we strive to remember God's faithfulness and blessings, above all else.  The following are lyrics from Laura Story's song, "Blessings."  These words are beautiful, comforting and a really good reminder that blessings often come in disguise.

"Blessings"

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise...

First Airplane Ride!

Jason, Lucy and I went to Washington DC over the weekend to celebrate Jason's cousin's (Billie Jo)  wedding.  Congratulations, Billie and Dale!  We had a blast!! Even though the government shutdown altered our plans a bit, we still found lots to see and got to spend time with great friends and family.

Lucy was an awesome traveler!  She did great on both flights (thankfully we had non-stop flights) and although her schedule was very different from when we are home, she slept and ate pretty well overall.  What a blessing to have such an easy-going child to travel with.   We went to Mount Vernon (the former home of George Washington), saw the Baltimore aquarium - it is HUGE and has some of the coolest exhibits, visited lots of family and friends, went to the National Geographic museum, went swimming at the hotel and Lucy got to hang out with Grandma Jeanette while Jason and I went to Billie's wedding.

She is a very social baby and loves to wave to people and smile at them and even play peek-a-boo with them if they look at her long enough.  She loves being around other people, especially kids, and got to meet 3 new dogs on Saturday!!  That was definitely a highlight for her. :)

Here are a few shots from our trip:

Lucy visiting with George Washington and his family.

Posing on the front lawn of Mount Vernon,

Catching a ride with dad at the Baltimore Aquarium.

Cheering for the dolphin show.

Posing in front of our hotel mirror after swimming in the pool - she loved looking at herself in that mirror!

Oh, and last weekend, we celebrated with the local runners at the Twin Cities marathon weekend.  Lucy ran the toddler trot (well, she walked a few steps and then sat down - mommy had to carry her across the finish line!) and we went to the marathon finish line to cheer on all the runners.

Sporting her runner's bib and medal

Matching mom in our Medtronic shirts!