Happy Halloween!

Well..it's a few weeks past Halloween, but hope you had a great one!

We had a lot of fun dressing up with the girls this year.  Lucy is finally somewhat interested in movies and has been watching the Toy Story and Finding Nemo / Finding Dory movies lately.  So, Jason decided to get a Woody costume for himself, which naturally led to me finding a Jessie costume for me and Lucy thought it would be fun for her to be Dory and Ruby to be Nemo, so here we are!!

October flew by for us and looks like November will be doing the same!  We'll update on our recent trip to Virginia next time and note that Lucy's been pretty healthy so far this school year, which is great!  No missed days for sickness yet...just a couple of minor colds so far!

Hydrocephalus Walk

September is Hydrocephalus Awareness month, reminding us all the there is NO CURE for this condition and in most cases, brain surgery is the only treatment for affected patients.  In the majority of cases, one surgery is not enough and shunts malfunction, requiring follow-up surgeries for the patients

We are SO thankful that Lucy has not had any issues with her shunt thus far, but every time she seems extra sleepy or throws up or tells me that her head hurts, I briefly worry that this might me the time.  :( I try to remind myself to take a deep breath, trust God and know that His plan for her life is EXTRAORDINARY and He will take care of her always.

We were able to participate in the local Hydrocephalus Walk at the Mall of America again this year - it's still quite a feat for us to get 4 humans out of the house by 7 am, we were feeling pretty good about that!  Lucy got to meet Miss Minnesota (a real princess!), which was her favorite part!  All hydrocephalus patients got an orange bandanna to wear, which Lucy wore proudly!

We have an appointment with Lucy's neurologist next week - thankfully no MRI this time - and anticipate that it will be an uneventful appointment...will post after we meet with him.  Jason and I are continually impressed by miss Lucy - she can read most words, is hilarious at times and is such a sweet, caring big sister!

Thank You for your continues thoughts, prayers and support for Lucy and all of us!

Relaxing in the crib together...

Playing Salon with Daddy

PJs on, ready for a story with cousin Dawson!

And look which sweet, sweet baby is 3 months old already!!!

First Day of Preschool!

Ready for her first day of preschool!!

Excited, too!

Lucy started all day preschool this week!  She is attending 3 days a week for just over 6 hours per day.  It's pretty weird not having her around, since she's been with one of us, my mom or a nanny at our house since she got home from the hospital!  Plus, I'm still on maternity leave with Ruby so I'm at home all day!!

To say she's a fan of preschool would be an understatement!  She seems to really enjoy it and comes home with art projects, stories of her friends and teachers and even has been eating the school lunch!  I sent a nicely chopped and easy to eat lunch with her the first day and she didn't even eat it...so I guess we'll see how school lunch goes.  The teachers, room helpers and school nurse all know about her TEF and narrow esophagus, so they are very helpful when she eats, helping her cut things and reminding her to take frequent drink breaks.  We always send snacks in her backpack in case the food provided isn't something she can eat.

They have a rest time after lunch,which I was a little concerned about since she hasn't napped since she was just over 3 (she'll literally stay up until 11 or 12 if she naps on a regular basis!).  However, she says she just "rests" quietly and it's fine.  I suspect she may be falling asleep based on how peppy she is at 8:30 pm at home...and my suspicions were seemingly confirmed when she got an award for being a good sleeper during rest time all week...Hhmmmmm.

To see her bounce back so quickly from her last dilatation has been awesome...what a trooper!  Thanks for the continued prayers and interest in Lucy's journey!

"Dad - is this high enough???"

Enough pictures!

Esophagus Dilitation #24

Just a quick note to let you know that Lucy's dilatation on Thursday went well.

Her GI doctor said while the esophagus continues to grow together, he can tell it is at a much slower rate and was more open than last time (in December).  We are planning to go down to yearly "maintenance" so don't have to repeat until next August - woo hoo!

The coming out of anesthesia part was AWFUL!  She had a lot of trouble keeping her oxygen levels up, so ended up getting re-sedated, lots of oxygen and an EPI Nebulizer.  When we finally got to see her, she was still sleeping for another 2 hours and we were otld she may need to stay overnight...however, in true Lucy form, when she was fully awake, she pepped right up, asked for a Popsicle and was ready to head home.  What a champ!!  It was a long day away from baby Ruby, but she was well cared for by my parents while we were away - Thanks so much!!

No pics this week - I prefer photos of Lucy happy and playing, like her normal self, not sad and sleepy. :(

This week started all day preschool Monday, Wednesday and Friday for Miss Lucy...what a big girl!!!

August + State Fair

Found Grandpa's Ice Cream Truck at the local Farmer's Market!

August has come and gone!  Whew...where do the days go?  Jason spent a good portion of the month in Rio at the Olympics, so me and the girls spent lots of time together and had some special visitors to help out mommy!

We are gearing up for Lucy to start Preschool next week - she's going 3 days a week ALL DAY, so 9:40 to 4:10...I can't believe it!  Our neighbor has a little boy in kindergarten and when I see the kindergarten bus come and pick him up, I can't believe that it will be here turn next year already!

Lucy has another esophagus dilatation this week, so prayers welcome that it goes well and that the docs find her esophagus growth slowing down finally!  Otherwise she's doing good from a health perspective and is proving to be a very doting, protective big sister!

I'll update after her dilatation with the results!  In the meantime, here are some pics from August:

Dressing in our princess outfits!

Snuggles in the morning

Reading to sissy!

My life while Jason is gone...lap full of love!

Gearing up for the Olympics!

Snuggling with Vinicius - the Olympic mascot

Cheering for Helen Maroulis - a women's wrestler who won GOLD!

Enjoying some swimming time in Mom and Dad's lake

Reading with Grandma, who came to stay with us for a while when daddy was gone - what a life saver!!

Top pics from the State Fair - Bumper Boats, sleeping baby and Cotton Candy...So. Much. Fun.!!

July

Sisters!

I'm sure you understand why we are FINALLY just catching up on July, since welcoming sweet baby Ruby Rio Bryant on July 8th.  She has been a great addition to our family and big sister Lucy is so proud of her and so gentle!  She loves tucking her in when she's asleep, saying, "hey, Ruby...watch this!" and making up new nicknames for her, like Miss Ruby Roo and simply "Roobs."  It's been a challenge having a newborn and a 4-year old in the house...mostly finding ways to keep Lucy entertained and engaged with Jason and I as we navigate the neediness of a tiny baby.  Ruby is overall a pretty easy baby.

Sleeping Beauty

It has also reminded of us how many special moments we missed out on with Lucy when she was first born, since she was in the NICU, often sedated and with so many tubes in her!  So thankful for the progress that she continues to make and the opportunity for her love for others to shine through as a big sister!

Enjoying some TV time together...

Teaching Ruby how to play

We've been enjoying the summer on Lucy's new swingset, swimming in the neighbor's pool and enjoying our non-scheduled days and weekends.  Lucy attended 2 weeks of "Preschool Adventure Camp," which was taught by her preschool teacher from last year, so that was super fun for her!

Floating...

No shirt...playing in the back year (she took a nose dive into the wading pool, so decided to take her shirt off instead of stay wet or go in and interrupt play time to get something dry!!)

Stay Cool and Enjoy the pictures!

Happy Birthday, Lucy!

Posing at her new backyard swingset

Lucy is 4 years old today!

I cannot believe how fast the past 4 years have gone.  Jason and I are beyond thrilled with the progress that Lucy has made in the past year.  She went to preschool and made "friends" on her own, her eating continues to improve, she only needed 1 esophagus dilatation, (she had one RIGHT before she turned 3, and then just one in December!), she's got a TON of spunk and loves to laugh.

We celebrated with family and friends with a backyard BBQ and (of course) Ice Cream cake on Saturday afternoon.  Lucy was THRILLED that daddy and Grandpa got her backyard swingset done in time for her and her friends to play on it at her party.  Today, on her actual birthday, we started with pancakes shaped like the number "4," a trip to Como Zoo, Finding Dory at the Movie Theater, a Chick-Fil-A picnic at the park and finally complete exhaustion, haha!  It's fun to be 4, that is for sure!

Can't wait to see what the next year brings for our sweet little Lucy!

Ice Cream Cake!

Wearing one of her new dresses from Grandma J. to church

New lab coat - now she can really get into the role of playing with all her medical supplies!

Riding a turtle at the zoo (that is the one animal she told us she wanted to see - a turtle!)

Riding the Train at Como Town

Finding Dory at the Movie Theater!