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."

Hanging Out with Mommy!!

Soaking up the sunshine at the Como Zoo playground

Jason has been in Fargo for the week at a wrestling tournament so I took the week off of work to hang out with Lucy...what a fun (and exhausting) week!

We went shopping, out for lunch, to Como Zoo, to the Children's Museum, out for dinner to celebrate grandpa's 60th birthday and to the park (numerous times).  We spent lots of time at home, playing in the pool, playing in the sandbox, taking wagon rides up and down the block, watching YouTube videos of "The Wheels on the Bus," coloring, playing with PlayDoh, dancing, eating popsicles, reading books and generally relaxing and just hanging out.  My sister and her three youngest (5, 7, and 10) came to play for a few days which was such a treat!!

We have an appointment with the neurologist this week to review the results of last week's MRI and will keep you posted on the results.

Here are some highlights from our week:

Ready for Pool Time!

Popsicle Time with friends!

Thomas the Train exhibit at the Children's Museum with cousins!!

Mom - look at this HUGE Sandbox (rooftop playground at the Children's Museum)

Riding on a bus!

Swinging and Clapping - two of Lucy's favorite things! :)

Esophagus Dilatation #18 and MRI

Lucy had her 18th esophagus dilatation today. Since she was sedated, doctors took the opportunity to have a full brain and spinal MRI done (without sedation it would have been a "quick" brain and partial spinal MRI). 

As always, she did great, even though the OR was running 2 HOURS BEHIND!  Thankfully, there are many nurses who love to love on Lucy and a very helpful social worker who bring cars for her to ride around in and bubbles for her to play with.  It was a long day, with the delay, the extra procedure and then after an MRI, Lucy's shunt needs to be re-programmed back to her typical setting, since the magnets in the MRI machine reset it.  Plus, like 10 minutes after we got home, Jason headed out the door for a week-long trip to Fargo.  Lucy felt good enough tonight to check out a new park by our house but was ready for a early night!  She has had a busy week playing with Grandma all week (Jason's mom), who was visiting from Virgina (the state, not the city!!)

Her dilatation got her to the 2nd level of the 12 (last time we got to the third).  It's not entirely surprising that we stopped at a slightly smaller setting because we are spacing these out more.  There is still no end to these procedures in sight, but all of her doctors agree that she is making tremendous progress and for that, we are eternally grateful! :)  The doctor we had today has been on maternity leave for awhile and she couldn't believe how much progress Lucy has been been in the past few months.

Lucy also had her Well-Child 2-year appoint this week.  Here are her stats:

Weight:  24 lbs, 11 oz (22nd percentile)
Height:  33. inches (49th percentile)

What a big girl!  We can definitely tell that she is getting taller and looks so much more like a toddler and not my little baby anymore!  At her 1 year appointment, she was:

Weight: 18 lbs, 5 oz (between 10th and 25th percentile)
Height:  27.6 inches (10th percentile)

Two Years Old!

One Year Old!

Our prayer, as always, continues to be that we... "Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12)

Happy 4th of July...

Modeling a new accessory

 ...we are a bit late wishing everyone a happy 4th of July but we definitely did enjoy the long summer weekend!

We went to my parents' lake house in northern Minnesota along with my parents and my oldest sister and her three youngest kids (5,7 and 10).  Lucy LOVES, LOVES, LOVES playing with her cousins and riding on grandpa's boat and touching the fish that we catch.

Cousin iPad time!

Checking out Rosie the dog's house

Picking out her spot for the campfire.

Lucy is keeping us busy repeating everything we say, sneaking snacks from the cupboard and running through the house...literally...running is one of her favorite "games" and it's even more fun if mommy or daddy run with her. :)

Sidewalk chalk!!

Other than that, we are continuing our streak of no doctor appointments and her feeding tube site is much, much better.  It is still a little red around the actual site, but the leaking has lessened a ton so we are back to changing her dressing 2 or 3 times a day again. Yay!

Next week, we have a weight check with her pediatrician and another dilatation as well as an full spine and brain MRI with her neurosurgery team, so it will be a few long days again for our sweet, sweet girl.

Throwback pic from last fourth of July!!

A month for the history books...

Can you believe that Lucy had ZERO doctor appointments in the month of June?  What a treat for all of us to not have to go to the doctor for any reason!!

Although - and I cannot believe that I am STILL writing about this - we did have a phone consult with the GI office because her feeding tube site has been SO leaky lately.  Jason and I have switched out her button (which goes into her stomach and then is filled with 6 ml of sterile water, so the balloon inside her stomach keeps it in place) 3 times in the past few weeks and we are back to changing her dressing 4 to 5 times per day - as well as going through many, many shirts that get soaked.  UGH!  Most concerning is that the skin around her site has gotten very raw and irritated and we are not able to combat it with any of the multitude of lotions, creams or ointments that we have (we have tried natural remedies, like Tea Tree Oil, barrier creams with zinc oxide, petroleum-based ointments, yeast-fighting creams and powders, etc., etc., etc.).  So we finally called the doctor's office and they suggested over-filling the balloon in her feeding tube button to provide a tighter fit and also prescribed a new cream that is supposed to work wonders on raw skin.  So, we are hoping that these two changes will help.

On the bright side, we did schedule an office visit with the GI team for August to talk about POSSIBLY taking her feeding tube out!  I am trying not to get my hopes up, as we have been told repeatedly that doctors are very conservative about not taking out a tube too soon.  Lucy is super patient with all the dressing and clothes changes, but can you imagine trying to get a 2 year old to sit still several different times a day so you can dry her off, rub her down with ointment, and re-dress her?  UGH!  She has been able to handle new foods lately, like small bites of rice that are not ground up and even some canned green beans!

On the positive side, Lucy continues to amaze and delight us every day.  She likes the new piano that we got from my parents (it's the piano that me and my sisters learned on!), climbing up and down everything in an attempt to reach things she shouldn't (like the table) and playing with all of her new birthday presents.

We hope you all enjoy a fun 4th of July weekend!!