Ahhhhh.......I'm Getting My Daughter Back :)

I've missed her. 
Even though I'm with her almost everyday, I've still missed her. She used to be my buddy that would go everywhere with me, and that came to a shrieking halt. So I've really, really, missed her. BAD. It makes me cry just writing about it.

It's been over 2 1/2 years since we got to do this. Just sit and talk, and enjoy a relaxing meal. Just me and her. And of course, our Charleston :).

There's a wonderful restaurant downtown Turlock named Bistro 234. They have outdoor seating. I drove down there earlier in the day and talked to them about bringing them there. We needed a place away from foot traffic......outside, away from germs.......and away from people. I told them it was going to be the first time doing this, so we were nervous. They were amazing. Just asked what we needed, and they did it. Love them.

So I went over to their house, whispered in my Charleston's ear that we were going to give mama a big treat, and take her out to dinner. He started his happy sounds.

We loaded up, and off we went. Less than 10 minutes away from home, but one of the biggest treats we've ever had. We got to go out to dinner, just sit and talk, and include our Charleston in our conversation. Amazing. Wonderful. I'm still on Cloud 9. Because we still have our Charleston, and because.........

            I'm Getting My Daughter Back.

Our First Kiss

Our First Kiss

Let me just say, that this is the BEST first kiss I've ever had!!!!! I've waited a long time for it, but it was worth the wait :), and I finally kissed the Prince I've always dreamed about.

I haven't written this blog, because I've been waiting until I could do it without crying. But I've finally realized that it's going to be impossible for me to not cry my way through it, so here goes.....

My Charleston has a tracheotomy now. Those are hard words to say. I never knew that I would have a grandchild with special needs like him. And it's been quite a journey, from NO!!!!! not my grandson.....to WHY my grandson????......to LOVING him and FIGHTING for him. And now, our first kiss.

Charleston had his surgery at Lucile Packard Children's Hospital at Stanford on Friday, May 18th. I'm not going to go into details, but suffice it so say that it was the longest day......and then week.......of my life, no thanks to Stanford. It was SO bad that the Medical Director showed up in Charleston's room, and had Ashley give her names and details, and they are investigating all that happened. It is only because my Charleston has a will to survive that he is still with us. And that is why I haven't written this blog; because it's so upsetting that all of us (especially him) had to go through what we did.

Ashley getting ready to go into operating room

Last picture with his mask :)

Just out of surgery.

Snuggling with her baby.

Cooling him off.

Recovery Time.

Even Koda, my granddog, was rooting for him!

Look at this sweet face.

A little bit loopy!!!!

Getting his hair washed.

I couldn't stop looking at his face.

1st hospital bed....without mama:(

We watched LOTS of movies.

Happy mama, knowing the worst is finally over.

Ashley was standing up asleep :(. She wanted to hold him so bad.

Note from daddy when he left to get some sleep.

He's turned the corner - yay! Getting his coloring back.

Reading a good book.

Finally....moving him from a crib to a bed with mama.

Boy did he sleep better now!

Little mama couldn't take her eyes off of his beautiful face.

Nap time - TOGETHER. 

Nana giving him a bed bath. 

We have never been able to brush or comb his hair because of his mask. He cooed the entire time she did this.

Ahhhhh.......relief........

Sleeping soundly.

Ashley doing her first trache change.

HOME!!!

First thing - BATHTIME!!!! 

I've never seen anyone so beautiful.

Prince Charleston!

Nap time on mama.

First walk without a mask!

SO handsome.

Isn't he beautiful? We are thrilled that this is behind us. He is still in "recovery mode", so we are having a very quiet month with him. He's getting used to it, and we are getting used to the new equipment and sounds.

Thank you, God, for giving me my Charleston. And for letting me keep him. And for giving me my Prince to kiss.

My "Bucket List"

For the last three weeks, SMA has finally hit the public's minds. Because of a little girl named Avery, everyone is finally hearing the words "Spinal Muscular Atrophy." Avery's mom and dad created a blog named "Avery's Bucket List," and the blog took on the world. Unfortunately, Avery died this past Sunday from complications of SMA. Avery's life has not been in vain, however. Because of her, Dr. Brian Kaspar's Gene Therapy for SMA is finally getting the boost it has needed financially, and we are thisclose to having the funds to complete it. Avery's parents have asked that people donate to Sophia's Cure Foundation to honor their daughter's life. And people are doing it!!!! Right now, over $111,000 has been donated since Monday, AND an amazing, wonderful anonymous donor has offered to match whatever is raised in Avery's name, up to $500,000.00 !!!!! If we can do this, we will have raised all that we need for the Gene Therapy Clinical Trials, which means WE CAN SAVE CHARLESTON and all of the other children with SMA!!!!!

Today I keep thinking of all the fundraising we've done, all the emails that have been sent, phone calls made, letters written, blog posts, Facebook posts, and most of all PRAYERS said. All the HOPE we've had, all the dreams we have. So today.....................here is my bucket list:

1. Raise the remaining $365,000 we need for the clinical trials.
2. Cure my Charleston and all others from SMA.
3. Educate the world about SMA so no future babies have to go through it.
4. Make SMA a mandatory test for pregnant women.
5. Have my Charleston be able to reach his harms out to me someday.

That is when this nana will know I have served my purpose on this earth. Because I'm the luckiest nana in the world, and this is my journey with my Charleston. How I love you, little boy.

Eyes Are the Windows to the Soul

I am so lucky to get to look into these eyes almost every single day. My Charleston loves me just as much as I love him. He tells me that by looking deep into my soul. I live for those moments. They make my heart happy. I'm the luckiest nana alive, to have a precious boy like him to love.

BIG NEWS!!!!

Charleston got his power chair!!!!!! I wanted to add a video of him driving it for you, but they're all sideways on my computer & I can't figure out how to fix that. I'll work on that!!! He is able to drive it with the use of his pointer finger on his left hand. It's amazing!!!! He's learning how to steer it daily, and once he's ready, we'll hit the streets!!!

Ashley was finally able to get a trial approved for a Tobii Eye Gaze System!!!! Because Charleston is hard to understand, this will become his communication device. He controls it with his eyes.  He's figured out how to tell his mama when he needs a diaper changed. He's also figured out how to get to the games :).

We are finally getting close to lockdown season being over. Yippeeeee!!!!! I'm hoping we get to celebrate my birthday this year feeding the ducks, as we did last year. I think it's a great annual tradition. Ashley can't wait to go shopping :). I think she's earned a shopping spree with me.

We received two amazing phone calls last week. The first was from A Sweet Affair Bakery in Walnut Creek. Last year when I was planning the 1st Annual Hope for Charleston Pasta Feed in Danville, I sent a letter to them asking for a donation. Not only did they donate, but ever since then, they collect donations in jars by their cash registers for our Charleston. I cannot begin to tell you the difference that they make in Charleston's life. Because of them, we are able to provide Charleston with things we never would be able to (example: his power chair!!!!!). The owner's name is Terry Babcock, and his daughters are Sarah & Jennifer. If you are ever in their area, please go in to their bakery, spend a bunch of money and thank them!!!! They are an amazing family to do this, especially when they had never heard of us before my letter went to them.

The second phone call was from the Volunteer Fire Departments in Reno. As you all know, we had to leave Reno last summer to get to a lower elevation for Charleston. The fire departments up there have done two fundraisers for our Charleston, and we assumed they were over with. NOPE!!!! They are going to do another one this summer!!!!! WOOHOOOOOOOO!!!!!!!! I'll let you know details when I get them.

Last, but not least, is that our Hope for Charleston 2nd Annual Pasta Feed has been scheduled!!!! It is on Saturday, July 21st, at The Great Impasta in Danville, CA. You can click on the link above for details, to purchase tickets, or to donate items for the silent auction/raffle. We're so excited!!!! As Charleston grows, his needs change. What a great problem to have!!!!! This year, we are not only trying to raise money for him, but also for research. We have teamed up with Sophia's Cure, and will be contributing to gene therapy research through them.

Guess what!!!! Charleston is going to be in my son's wedding!!!! BJ & Catie are getting married in September, and my grandson gets to be in it. I can't stand it. We already bought him a tux!!!!

Life is good with my Charleston. He loves Barney, has discovered earphones with my ipod (which has now turned into his ipod), loves driving his power chair, and even will sit through an entire full-length movie as long as I am rubbing his feet and hands with lotion. He thinks he's doing me a favor!!!! HA!!!! It's my favorite time of day, to get to rub on him. OMG I LOVE THIS BABY!!!!!

It's Not Funny, Nana

Enjoying My Charleston

All good things are happening!!!! Let me catch you up on my Charleston.

Christmas. Oh my gosh!!!!! It was A.M.A.Z.I.N.G. We had a small celebration at home, since it's the middle of "lock down", that included Charleston, Ashley, Cameron, GiGi (Cameron's dad), Blake (Cameron's cousin), and me. Good food, lots of presents for the little man, and the best part ---- HE CALLED ME NANA!!!!! I had only heard it once before, and believe it or not, it was the previous Christmas. He worked so hard to say it this time.....but it came across his sweet little lips and was the best gift EVER. I love this little boy.

Santa Claus made a visit to Charleston's house!!!! SANTA CLAUS!!!!

Check out his eyes looking at Santa!

Charleston was so excited for Christmas! He knew it was a special day. We told him it was Jesus' birthday, but that he got to have tons of presents.

He always helps me cook. He's the best helper in the world, because he puts the love into everything we make, and he knows that's what's the most important ingredient. We had fun making Christmas dinner together.

                                                   He got some lovin' from mama and dada.

               

Daddy got him a boat to drive at the park!!!!!

While we were celebrating in Turlock, Unkie B & Auntie Catie were suffering through Christmas in Cancun!!!!! They had a great week with BJ's future in-laws.

 Since Christmas, Daddy and Charleston have been having fun at the park driving their boat together. We've had some good weather, so Charleston has been able to be outside a lot more, as long as we don't get around any other people.

Nana got a new bike, and Charleston liked sitting on it! His favorite thing was the bell.....so he now is the proud owner of a bell on his stroller that announces his arrival everywhere we go!

Being goofy.

Since Christmas, we've been trying to get a power chair and a Tobii Eye Gaze System for Charleston. Both were initially denied, but we're not letting that stop us. Amazingly, Ashley found a BRAND NEW power chair on craigslist!!!! We are in the process of having it modified for Charleston, and soon you will get to view a video of our little boy driving!!!!! It's going to open the world up to him so much. It will enable him to have a sense of independence that he hasn't had. We can't wait!!!!

The Tobii Eye Gaze System is incredible. Because Charleston can't verbalize very well, this machine will be his communication with the outside world. It actually reads his eyes - he will focus on the screen, and it will not only speak for him, but will be his gateway to school & the internet once he's older. We've gotten some advice (thank you Clif Black!) on how to go about trying to get it approved, and are working through "the system." It's so frustrating to have to fight so hard for every single thing, but we won't stop until he has it.

We are enjoying living in Turlock, and have a wonderful support team here. It's great to be surrounded by family. The weather is much milder here, so we are able to take him out for walks quite often. Cameron is great about getting them out of the house, even if it's just for a car ride. 

I am working on two fundraisers, so details will be coming out soon for those. Without everyone's help, we could never get through this on our own. Thank you so much; Charleston is a happy, thriving two year old, and we never thought we would see that. We are blessed. I'm the luckiest nana on the planet.