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!