"I just want to ride bikes with you" -

Our most important goal since Charleston was diagnosed is to make sure he LIVES LIFE!!!!! I, as his nana, have been frustrated over enabling him to have a simple joy - riding a bike.

I just recently told Ashley that every Christmas, I donate a children's bike in his honor. It's something that has been important to me, and has filled a small hole in my heart because he hasn't been able to ride a bike of his own.

Now look!!!!!! Charleston has a bike!!!!! And little mama took him for a ride yesterday in their neighborhood!!!! And he LOVED IT!!!!

I found this bike by searching on the internet. Periodically, I've searched bikes for disabled children, to no avail. But a few months ago, something showed up on indiegogo.com - here's the link for any of you that may be interested: Taga Bikes. Ashley contacted the people at the company, and they were fabulous to work with!!!! They made modifications for Charleston, and the bike was delivered last week.

My Charleston is happy, little mama is happy, dada is happy, and this nana is OVER THE MOON!!!!

HOPE. For REALS!!!!!!

Seven years and twenty-three days. "Take him home and love him, there's nothing you can do." "No treatment or cure." For 7 years and 23 days. He's a fighter. Mom and Dad are fighters for him. Our entire family has fought for him. But that's what we've been told, for 7 years and 23 days.

On December 23rd, 2016, my Charleston turned 7 years and 23 days old. TAKE THAT SMA!!!!!

My phone rang at 1:40pm. I was at the Oakland Airport, picking my mom up for Christmas. I knew what it meant, but my mom didn't. I started crying, but this time........with tears of joy. Of HOPE. Of EXCITEMENT. Of THANKFULNESS. I knew what her phone call was about, and it was incredible news that we had hoped and prayed for.

It was Ashley..........."We got it, BABY!!!!" And, for the first time in 7 years and 23 days, her voice was full of JOY.

Yes, we got it, baby!!!!!!! The FDA had just made an announcement --- they released the very first pharmaceutical treatment for SMA!!!!!!!

http://www.curesma.org/news/spinraza-approved.html

This is a drug that has been in the works for years. It is NOT a cure. It is a treatment. So what does this mean for my Charleston?

We don't know. What we do know is this:

The clinical trials have only been performed on babies with Type 1. Has it helped? TREMENDOUSLY!!!! Some of them are walking.

What will it do for Charleston? We don't know, but we are hopeful.

How does it work? Here is a really good, short video that explains it:

http://www.sandiegouniontribune.com/business/biotech/92202909-132.html

So now we wait. AGAIN! Little mama has been busy contacting hospitals, doctors, the pharmaceutical company, the distributor of the drug, CCS, and anybody else that will listen!!!!
We are now awaiting insurance approval. The cost is $125,000.00 per injection. Yes - $125,000.00 for every single shot.

What does it involve?

Charleston has to remain healthy (NO VISITORS)

It will be given to him as a lumbar puncture (in the spine), at a hospital. He'll have 4 shots in the first 45 days, then another one every 4 months. Each one will build on the previous one. We have been told not to expect to see any changes for a year.

Please pray for Charleston. Please pray for Ashley and Cameron, and baby Cole. Please pray for all of us.....for strength, for guidance, and for peace with this decision. Please pray for the families that have lost their warriors to this disease too soon. And please thank God for allowing us to keep this angel on earth.

SEVEN!!!!

December 1, 2009......I became a nana. A beautiful baby boy named Charleston. I melted. My heart was full.

Three months later......"take him home and love him, there's nothing that can be done."

TODAY!!!! December 1, 2016.....that beautiful baby boy is SEVEN YEARS OLD!!!! It's been the fight of a lifetime - for ALL of our family and our friends (those that have stuck around!).

TODAY.....we celebrate. Charleston wanted to go to the beach for his birthday, so mom, dad, and baby brother Cole are at the beach!!!!!

TODAY....my Charleston is in the 1st grade, and has his own robot that attends school for him.

TODAY....my Charleston's favorite thing in the whole wide world is youtube.

TODAY....there IS a treatment for kids with SMA.....and of course, little mama is fighting to get it for him.

TODAY.....he's happy.

TODAY.....he has a little brother to love.

TODAY.....we are blessed to have this little hero in our family. I love you, my Charleston

Miracle League truly is a miracle!

HE PLAYS BASEBALL!!!!

Charleston has been playing baseball with Miracle League. It's an organization that makes it possible for kids like him to be "normal." He's a great player. Daddy (Cameron) assists him by helping him swing the bat......and at the last game, he got a home run!!!!

If any of you want to experience a wonderful, heartwarming thing........find a Miracle Field near you. Or better yet, volunteer! It truly is amazing.

Here are some pictures from his 1st season.

His two biggest fans (besides mom & dad):

Nana

Little Brother Cole

His name is Cole, and he has the BEST big brother on the planet!!!!!

My Charleston is a BIG BROTHER!!! And let me tell you, he takes it very seriously. He is crazy about baby Cole. Here is a picture of the first time he met him (at the hospital).

Cole is a VERY happy little boy. Who wouldn't be with the big brother he's been blessed with? 

BIG BROTHER PARTY!!!!!

I know, I know, I haven't written in way too long.....so what do I mean by "Big Brother Party"?

MY CHARLESTON IS GOING TO BE A BIG BROTHER!!!!!

One morning a few months ago, Ashley and my Charleston FaceTimed me, which was nothing unusual. However, she said my Charleston had something he wanted to tell me; and then she held up an ultrasound picture, and she said "He's going to be a big brother!" NO WAY!!!!! I COULDN'T BELIEVE IT!!!!! I NEVER EVER EVER EVER EVER THOUGHT HE WOULD BE A BIG BROTHER!!!!!! I think, more than anything, I was in shock because it took awhile for it to sink in. I honestly didn't think it would ever happen. So of course I asked, do you know what it is???? 

CAN YOU BELIEVE IT?????? After talking with them, I cried for about 254 hours .... yes, I said 254 hours because I cried forever.....thanking God, thanking Ashley, thanking Cameron, and yes, thanking my Charleston. Because Charleston gets what he wants.......and guess what he wanted?????!!!! 

A BABY!!!!!

This little boy is going to join our family sometime in September, and I cannot wait to meet him. And again, I'm sure I will cry for another 254 hours. It's just me. It's what I do. 

So.......earlier this month, I gave my Charleston a BIG BROTHER PARTY. Ashley didn't want a baby shower, so I found a way around that!!!! Can I just say, that my little Charleston knows how to plan a party????!!!!! I have NEVER had so much fun picking things out with him. We talked, we laughed, we got mad at little mama & kicked her out of the planning (true story!), we shopped, we made decorations. So here come the pictures.

First, a theme....he wanted The Very Hungry Caterpillar. 

Then came our Hungry Caterpillar Project Day!!!!

Egg Crate Caterpillars

Toe Print Caterpillars

Hand Print Caterpillar

Balloon Painted Caterpillar

Very Hungry Caterpillar Paper Chain

And finally, the day of the BIG BROTHER PARTY arrived!!!!

The BIG BROTHER!!!!

The family of 3, soon to be 4 :)

We had the party at a restaurant called Table 26 in Turlock. They were absolutely amazing. They embraced my Charleston AND the party - helped us in every step of the way - & served us delicious food. Thank you from the bottom of our hearts!!!! You made our day simply perfect.

Soon, I will be nana to 3 little boys. I am thankful.