Wednesday, July 1, 2015

A Week Off. .

Well, technically, we are taking 2 weeks off of summer school and therapy, but only one of them involves being on the beaches of Florida. 

This year, we changed it up a bit, and came to Port St. Joe. It's very quiet and secluded. .a little too secluded.  I guess Seaside has me spoiled with everything in walking/bike riding distance. But, I quickly got over that ;)

Something about having a beach all to yourself is AMAZING! And, seashells - hello, seashell alley!! 

The house we are at has the best back porch overlooking the beach, and big enough where the boys can go to town in the gait trainers. Sleep has been magical so far ;)

I'm so blessed that we are able to keep adding new experiences to Carson and Bray's lives. They surely know what vacation is all about ��

Wednesday, June 3, 2015

Pre-K Grad & 2nd Grader!!

So proud of Braylon on a great school year. He went from being glued to my hip to being in a classroom for a full day. Helps that we had the dynamic duo of teachers working with him, too.

He'll spend another (maybe 2) year in pre-school. I'm excited to see what next school year holds.

I cannot believe this kid will be going to the 2nd grade!! These years are flying by. We are so proud of you, Carson Paul. This has definitely been a year where both kiddos have come out of their shell a little more and we couldn't be happier.

Tiger Camp. .


Carson had an absolute blast, and was so upset when it was over. His buddies were so great with him, and will more than likely, get him next year too!

Each day after drop off, they had breakfast and loaded the buses. They went to the Zoo, Aquarium, Global Wildlife, Laser Tag, Bounce Place, Storyville, Swamp Tour and Children's Museum. Then on Friday, they ended with a big Carnival Party out at the Dental School.

So, so amazing, and so blessed that Carson was able to be a part of it!

And, this is how Carson looked every evening during dinner..


~ Heart & Sole Prom ~

Saturday night was just magical. Between the kids walking down the red carpet while parent's had their camera ready, to the music being at the perfect volume. .perfectly thought out!

It's safe to say that all parent's had just as much fun as the children!! It's one of those nights some of us thought would never happen until a therapy center decided to change all that.

Big thanks to TLC - Therapeutic Learning Center for hosting & WDSU for airing a segment!

Spring Ball. .

Miracle League Spring Baseball

We already miss our friends, and can't wait to see them in the Fall. We saw some major growth from Carson! He would reach to grab the bat from his buddy's hand. He needed            help swinging the bat, but he would hold it, and he would give all of his friends a "high five" after scoring a run. So stinkin' cute!!

New Team Member. .

I'm never a fan when adding a new doctor to our team. Do they know anything about L1? Are they realistic? What are they going to say about my child?

I'm all for hearing (and sometimes) trying new things, as L1 is rare. But, we've had those times where risk and failure outweighed the hope. 

When our neurologist Bray start seeing a Physical Med & Rehab Dr., I was a little thrown off. She had never suggested this type of Dr. for Carson, and it just put an uneasy feeling in my stomach that something else may be going on. But, Dr. A has NEVER let us down so I figured I would hold all questions/concerns for the new guy.

Yesterday was the big day. Can I just put on record that I LOVED THAT DOCTOR!! He was informative, encouraging, and best of all, realistic! Basically, he's a one stop shop kind of doctor.

He'll monitor Bray's bone and muscle growth, he reviews all IEP's to make sure goals are realistic and obtainable, he sets up ramps for home and vehicles, writes scripts for equipment/orthotics/special care seats, etc.

We went over all of Bray's current therapies (in school and outpatient). We will be adding an outpatient Speech Therapy, Equestrian Therapy and Swimming. The last two therapies are the two I have struggled keeping in our schedule. But, I know it's something I have to do, so I'll have to find a way to make it all work.

Bray will see him every 12 weeks for this first year, and then we can move to every 6 months. There were a few areas of concern - hip alignment and ankles - but, with therapy and stretching, we should be able to maintain.

Friday, May 1, 2015

Our Little Athlete. .

It's no new news that Braylon loves to be on the go. Others can vouch that he will get pretty upset when he stops. He has been doing so awesome in his gait trainer and learning how to maneuver around.

I decided it was time to sign him up for a Fun Run!! My good friend puts on an annual 5K to raise money for PWS. Her sweet little man, Cade, was diagnosed shortly after he was born. In a nutshell, Cade never feels full. The money she raises from this event goes to research in hopes that a cure will be found and these kids can live life FULL :)

Although our kids have different dx, we still walk the same path of being a special needs parent. Even better is the fact that she pushes him like I push my own kids. We are their biggest cheerleaders and will do anything and everything to make their lives better. Love having her as a friend!!

So, Bray and I signed run for him, 5k for me. He did great! No, he didn't do the entire 1/2 mile, but he did some of it. We would have been out there all day, but you gotta start somewhere!! We are going to work more on this, and I hope that he'll turn into my little running man. Nothing cuter than a gait trainer whipping past you :)