Movie Night!!

We had out first movie night with Lucy - what a blast!  We weren't quite sure how she would sit still for a whole movie, but we thought it would be a fun Friday night activity for all of us!  So, we downloaded Disney's Frozen, bought Lucy some Frozen pajamas, stocked up on snacks to try it out,

Trail Mix - Lucy style!!

She did sit still for some of the movie, but mostly had fun staying up late, watching TV with no lights on and having the run of the basement while hyped up on sugar! :)  We couldn't even get a good picture of her since she was always moving!  So we had to settle for a post-movie sleeping picture in her crib.

I really cannot believe that she is getting old enough to do these types of things with - where is our baby?!?!

We've also been having fun enjoying the last weeks of summer:

...celebrating daddy's birthday:

...and playing with all of our friends!

Side note:  I often get asked if Lucy's hair is naturally curly or if I curl it.  I'm like, really?  Would a 2-year old sit still enough to let me curl a head full of hair AND do I have time to spend that kind of effort on her hair?  NO WAY!!   I really do love her sweet, natural curls though!

We are a week away from feeding tube removal - woo hoo!

We have an appointment to take OUT the feeding tube, folks!

We are beyond excited to share the amazing news that we have an appointment scheduled to remove Lucy's Feeding Tube!!  Her next esophagus dilatation and endoscopy is scheduled for September 2nd and her GI doctor thinks it would be a good time to take out the feeding tube at the same time!  That was definitely what we were hoping to hear at her GI appointment this week and are so, so pleased that the doctor agrees with us.

Lucy has made SUCH tremendous eating progress in the past year.  Recently I was looking back on her food journal from a year ago and she was eating baby food, individual Cheerios and Baby Yogurt Melts, cut in 4 pieces (these are like the size of a large chocolate chip to start with!)  Now, she can eat anything that fits through a food grinder and eats Cheerios by the bowlful, crackers, cookies and even blueberries with very little trouble.  We couldn't be more proud of our little girl and are very excited to have her feeding tube out.

This means that we can take her swimming, which we've only done a few times and always with much anxiety, extra preparation and large pieces of adhesive involved (and NEVER in a lake!!)!  She won't have to be careful about sliding down the slide on her tummy.  She won't get strange looks from kids or people who see her lift up her shirt at the park and wonder what is on her stomach.  She won't have to lie still multiple times a day while we change her dressing - which still constantly leaks.  It means we can stop spending $20 a box on tape (which we are so grateful to have found - it is truly the best, least irritating tape we have found - and we tried A LOT!) and that I can re-deploy all the closet and drawer space that is devoted to extra tape, gauze, dressing and other g-tube supplies.  I can stop carrying around my emergency "just in case her tube comes out while we are not at home" packet.  It feels like a HUGE step forward in her healing process and again, we are so pleased.

So, prayers that nothing changes between now and September 2nd and a huge THANK YOU to all of you who have been our comfort and listening ears during this journey.  I cannot tell you how much I appreciate being able to take Lucy somewhere that isn't our house and feed her through her feeding tube without feeling like people are gawking.  I understand human curiosity - it is just uncomfortable when it is directed at your child.

Obviously, Lucy still has a long road ahead of her towards "normal" eating and removing the tube (which he haven't even used for awhile now) doesn't change anything about that.  However,  something about this step forward feels monumental and we are all about celebrating it!!

"Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12)

MRI Results

Waiting for the next float at the parade!!

 We had a meeting with Lucy's neurologist (Dr. P) this week (arguably the best doctor's office from a toys and entertainment perspective, so that always helps the appointment go better!)

She hasn't had an MRI for about 16 months (they like to do one about every 12 months at this age, until the are school-aged).  These appointments always make me nervous and I'm not exactly sure why.  Even though I know that the results of a current state MRI will not change anything about her current development, it has the possibility of giving us terrible news about her long-term development.

However, that was not the case this time!  Her brain looks good - ventricle sizes are stable and within a normal range and the fluid along the outside of the brain and between the right and left sides had dissipated slightly - all really great news!  He spine is looking straighter than it did on previous MRIs and he saw no issues there.  He is pleased with her development - motor skills, speech, personality, etc.  It always makes me smile when her doctors ask if she is running and jumping and that kind of stuff - I'm like, "she never sits still!"  At this visit, right after he asked if she ran and jumped and climbed, Dr. P. asked her to come out in the hallway so he could watch her walk.  It took about 10 seconds for her to spot a balloon at the other end of the building for her to take off running and giggling all the way.  Dr. P is like - well I guess that answers that question!

Getting used to the bouncy house...

Action shot - it's hard to capture a bouncing toddler on an iPhone camera!!

Exhausted, and enjoying the feel of the bounce from the other kids - haha!!

 Jason was in Florida for a good part of the week so Lucy and I took the opportunity to visit my sister and her family for Albany Heritage Days - complete with a bouncy house and Lucy's first parade.  Although she can't eat like 95% of the candy they throw out, she did score some political stickers, a frisbee, a juice box and several suckers.  She loved the marching band, dance teams and fire trucks and police cars.  I think that there will be other parades in our near future!

Our next appointment is with the GI doctors next week to talk about the long-term plan for on-going dilatations and how long they recommend keeping her feeding tube in...excited and anxious for that visit also!!

I had a great reminder of God's providence this morning at church.  In John 16:33 when Jesus was speaking to his disciples about the upcoming crucifixion events, He says, "...In this world you will have trouble. But take heart! I have overcome the world."