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...