Road trip and Beach Vacation to Santa Rosa Beach, Florida 2014

Our last vacation in late summer 2012 was rough. Miss Grace didn't travel well, she did not sleep well in hotels, she wasn't pleasant to be around, she refused to participate in activities which meant one parent had to stay back with her and of course she didn't eat well.  To say I was concerned about a repeat of that vacation would be putting it mildly. Thankfully that did not happen!

We left our early on the morning of June 27th. 4AM early. Here is a photo diary of our trip . . .

 

Welcome to Louisiana! Time to wake up the kids and change out of pajamas!

 

 

We borrowed DVD players from friends and it made the trip much more enjoyable. Miss Grace watched FROZEN several times.

 

Welcome to Mississippi!

 

We hiked up a hill to look out over the mighty Mississippi River! Cowpoke wanted to be like Huck Finn and try to raft it!

 

Even Gator enjoyed the hour or so we spent exploring at the state line. They even had a dog walking trail which was super nice.

Time for an afternoon nap.

 



 

Welcome to Florida Visitors Station provided free samples of fresh squeezed orange and grapefruit juice

 

 

Look! It's a Blue Angels plane! They are based out of Pensacola Naval Air Station. Our cousin is at the Naval Academy so we took lots of pictures for her!

 

Even Gator was glad to be in Florida! Not much longer until our destination!

 

When I lived in Gulf Breeze, FL, I loved to get fresh seafood straight off the boats at Joe Patti's. I love to take my family there! We got awesome fresh Amberjack, Blue Crabs and Shrimp. The kids were so excited and the sales girl let them look, touch and ask a zillion questions!

 

When we got back on I-10 Cowpoke spotted this boat! We died laughing and had to get a picture for our Gator. Sorry about the reflection.

 

 

We went out to walk the beach our first night and of course had to play in the surf

 

Exhausted after a very full day!

The first few days she was very leary and kept right by an adult and away from the surf almost the entire time

 

 

But she slowly got braver and closer to the water thanks to a lot of coaxing and encouragement from Uncle Matt and Aunt Ali

 

She LOVED the pool at "the fun house" as she called it. We had a fantastic 4/5 beach rental with a private pool just a short 5 minute walk to the beach. It was amazing! We have stayed at beach rentals before but nothing like this house. It was fantastic! If you want more info message me. It was worth every penny!

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We spent Tuesday on a girls shopping day in Seaside. It was to crowded for Miss Grace and she did not like all the people but she used her words to tell us and she didn't have a meltdown.

 

We even found a snowcone stand. It didn't have a safe FROZEN (blue coconut & wedding cake) snowcone like Ozzy's, but we settled on a clear coconut and it sufficed for a cold treat on a hot day.

 

She finally put her feet it on day 4!

 

Gator was keeping a watchful eye over his girl!

 

 

She even ASKED Aunt Ali to help her boogie board at the very edge of the surf

 

And I got conned into this mermaid doll by a local shop keeper. This doll floated out to see within about 18 hours of us owning her . . . . oh the memories!

 

Loving the beach!

Dancing with her Daddy before our family photo shoot

 



 

Gator enjoyed relaxing poolside as his girl swam

 

Evening walks on the beach were a hit with Gator

 

During the day he stayed under the canopy and kept his eye on Miss Grace

 

When she needed some snuggles she would come get them

 

Grace enjoyed making "strawberry sand cakes" and "sand tcookies"

 

 

Thankfully the local Publix Grocery Store had Sunbutter and Tapioca Bread! We ran out! We even got Chocolate Sunbutter bars but doesn't like them.

 

Playing with Pop Its on July 4th!

 

Ready for fireworks on the beach!

 

The fireworks were gorgeous! Grace and I agreed our favorite were all the Chinese Lanterns like they had in the movie Tangled. They were gorgeous and you could see them for a long, long time after  they were released. We must get some before we go next year!

 

All in all it was a FANTASTIC trip that we all very much needed. We enjoyed our break from swimteam, work and all our therapies and doctors appointments. While we did still see some issues with Miss Grace, she adapted much better than expected and all the adults in our group commented on how well she did. We are blessed! Now it is back to the grind . . . .

 

A food milestone!

It is no secret that Miss Grace has some severe feeding issues.  She loved peanut butter, but she lost peanut butter after her March scope and she has not had many foods she can eat on the go without cooking.  We tried sunbutter and tapioca bread right after she lost peanut butter and she refused. We mixed it with honey and then with brown sugar and she refused to eat it. Tapioca bread is dense like sourdough bread and she wasn't fond of that texture either. I have been very concerned about feeding her on the road and while we were going to be gone on vacation. At feeding therapy on Thursday, June 26th we tried again and she loved it! She ASKED for a sunbutter and tapioca bread sandwich with brown sugar and cinnamon. Her wish is my command! Here she is eating her sandwich. This is HUGE for us!

VBX 2014

Miss Grace was so excited to attend VBX at our church! VBX was held for 4 nights from 6-8:30pm.  The kids attended a worship rally, snack time, arts & crafts, Bible lesson, recreation and closing show (everything from a professional jump roper, a juggler and Christian Wrestling Federation show) each night. It was a jam packed week full of fun and excitement! There were 4 classes of 4 year olds and we had 38 kids in our class plus Gator! Our church has done an awesome job in recognizing the fact that some kiddos are just wired differently. We have a special needs minister and she worked hard to make sure VBX was enjoyable for ALL children. She had a picture schedule of activities, a designated felt square to sit on during large group activities and noise canceling headphones for when everyone got really pumped up. We also had an ACCESS room where our kiddos could go and have some down time and regroup when and if needed. It was a HUGE blessing and it made VBX successful for Miss Grace. I love my church for many, many reasons and this is just one of the many reasons!  All in all a great time was had by everyone and an afternoon nap was guaranteed the next day too!

Grace was exited to spend time with her precious friend Eliza! They have been friends since Grace was 2 weeks old and Eliza was 7 weeks old!

 

Rocking the pink headphones! Thanks Mrs. Mellisa for having these for us to use!

 

 

Gator was listening to Pastor Wayne talk all about how our mission offering was going to be used to build a road in Guatemala!

 

VBX makes her so tired!

She took a nap EVERYDAY during VBX week!

Happy Birthday, Gator!

Happy Birthday, Gator!

 

Happy Birthday, Gator!  We are so thankful to be blessed with you!  In the few short months since you joined our home you have changed Miss Grace's life forever.  I love all of the new opportunities she can experience because you are by her side!

 

 

Gator's trainer had 6,000 acres and he got to run and play a lot when he was not training.  Sadly our 1/4 acre is a little disappointing to him.  We wanted to do something really special for his birthday so we took him out to the local lake.  827 threw the orange training "duck" and Gator got to swim and play.  He was so happy!  He is wearing a waterproof vest so he is visible to boaters as he swims out far.  Gator works so hard every day for Miss Grace and sometimes he just likes to cut loose and be a regular dog.

 

 

 

 

And what is a birthday without cake?!?!

Gator got a very special birthday cake that he thoroughly enjoyed as you can see!

 

 



Biopsies are back! And an overdue update

First off Miss Grace's biopsies are back and looked beautiful! We are overjoyed with this news! That means that our intense steroid treatment and our elimination diet and our change in reflux medication is holding her stable. This is fantastic news as we were on a downhill slide for a while there. Our new doctor wants us to give her a few more weeks of this stability before we change things up again.  We go back and meet with him on June 18 and will talk about weaning off the steroids.  There are quite a few reasons why we want her off steroids, but we will have to see how the whole treatment team weights in.

 

 

This morning we had our monthly nutrition appointment. This can cause some anxiety for Grace as feeding is such a huge issue and in the previous two months we have dropped weight. I am PROUD to say because the medicine is working and she is feeling better she was up 10oz in 31 days! I am so proud of her. We have not recovered all the weight we lost but she is on her way and she gained appropriate weight that is expect in a normal 4 year old in that time frame!

Miss Grace was matched with a runner two weeks ago through the "I Run 4" program.  This program is a nationwide effort where they match special needs children and adults with runners across the nation. The runners dedicate their miles to their buddy. They encourage each other to work hard!  Grace's buddy is named Ms Christine and she lives in NJ. I think this is super special as my grandfather that passed away in December was from New Jersey. We are excited to have Ms Christine and her son, Cody, Run 4 Grace! Today is National Running Day so we celebrate them!

 



 



We are getting ready for vacation.  Last summer we "vacationed" at Our Children's House at Baylor Dallas.  While we feel blessed to have access to these services for Grace it meant lots of home time the rest of the summer. This year we are looking forward to time away with family. With Grace's anxiety and transition issues we have been talking a lot about our upcoming trip and "reading" the vacation guides together!

 

 

Today I would also like to recognize Grace's AMAZING Sunday School teachers at our church.  Grace is not an easy child and sometimes can be downright challenging. She has been blessed with two amazing teachers - James and Ashlee. They genuinely love her like their own and make sure she is included and engaged in every part of the class. You have no idea how much that means to my Mama heart. Here is a picture from Sunday. She was hanging on his every word! I love it!