I {smiled}

I am grateful for all of the reasons that I have had to SMILE..........

 I smiled because I was able to take Regan to school one day last week. :)

I smiled that I got to see her be the flag child for her classroom. ;)

I smiled becuase I was able to get Regan's hair ready for crazy hair day. :) 

 I smiled becuase she smiled! :)

I smiled because Bubba had a good day week. :) 

I smiled becuase we made welcome back Toobie signs. :) 

I smiled becuase Bubba smiled. :)

I smiled becuase Bubba was able to sit up on his own and hold his head up one day last week!!

I smiled becuase Stanley is such a good friend to the kids. :)

 I smiled becuase I got to take my girl out on an early birthday lunch. :)

I smiled at how excited she got when they sung to her. :)

I smiled because we got to have some girl talk. :)

I smiled because I got to help Regan with her Dino-rama for school while Daddy cuddled Bubba. :)

I SMILED becuase I felt like I got to be the Mom that I needed to be for both of my children this week. I enjoyed every second of these simple little things that made me SMILE. I am grateful for the tender mercies this week and for my smiles. :)

What did you smile about this week?

{Sweet and Sour}

We have had more sours than I would want lately.

I think it is even more important to find...

To LOOK for...

To actively seek out...

the sweet moments when life is throwing so may sours you way.

Bubba has been sleeping a LOT.

The other day he woke up before noon and was doing pretty good.

So, we went on a lunch date and watched the busses go by.

This might not seem like much to most people but this was HUGE or us.

He was awake....

alert....

and.....

HAPPY!!

Friday night Regan and I got to sneak away for a date night.

We went and saw the movie The Lorax.

We were lucky enough to have Nana and Pa pa come with us.

It was such a cute movie!!!

It is a MUST see family movie!!!

On Saturday Regan got some cheer mail.

The first package was from my sweet little sister.

Aunt Karen sent Regan art supplies, a VERY sweet note, and a beautiful necklace.

The necklace read....

"I am always with you be brave have courage and love life"

So, now when she wears this special necklace she has a piece of her Aunt Karen with her. :)

Then she got a surprise piece of cheer mail.

A very sweet blog reader and virtual friend sent Regan a very sweet letter with a gift card to Disney.

Thank you Jodi for being so thoughtful and kind to my sweet girl!

After opening the mail she was very excited!!!

She was excited to share the news with Bubba.

I am so grtaeful for the sweet moments in my life!!

Now, I am off to take Bubba to yet another dr apt.

{RARE}

In honor of National Rare Disease Day yesterday I wanted to share my son’s story with you. Shortly after our son was born we were told the worst news possible. “We don’t expect him to make it to his first birthday.” And if that wasn’t enough “we don’t expect him to sit up, talk, walk, do much of anything… your son will be in a vegetative state his entire life.” Our hearts were broken to find out that our son was diagnosed with a very rare life threatening disorder called Trichothiodystrophy. {109 diagnosed cases in the WORLD} There is no cure for this awful beast but there is hope! Collin is now 11 years old and lives a very happy life. We have had to watch this beast take over his body but it has not defeated his spirit. My hope in sharing his story is that those just beginning on this long journey will see that there is HOPE.

Girls just want to have {FUN}...

After our fun at the park on Saturday Bubba was TIRED.

Ther girls on the other hand were non stop! :)

First thing.... well, what else in this house.....

Dance PARtay Baby!

After  their Dance PARTAY they asked if they could have a spa day.

So, that is just what we did.

I sent the girls out of the room and then invited them back into the Presley Spa. :)

What is a Spa Day with out Facials?!?!?!?

and we ended the Spa Day with Mani and Pedis of course!!

If you can't tell......

I LOVE LOVE LOVE having a little girl. :)

Now, if only I can get her to stop growing up so fast! wink!!

Only in our home.....

are Sunday afternoons spent

making Wheel Chair trains. :) 

Just keep swimming..........

You know what you gotta do when life gets you down?
Just keep swimming
Just keep swimming
Just keep swimming swimming swimming
What do we do we swim, swim, swim
OH HO HO How I love to swim
When you WAAAAAANNTTT to swim you want to swim 

I have been singing this Nemo song over and over this week. Regan thinks it’s pretty funny.  

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”  Marjorie Hinckley.

Bubba and I have had a lot of dates lately and not the fun kind. If you are my friend on FB than you have probably seen lots of check in’s or comments for the hospital or dr. offices.  They are worried about Bubba. I am worried about Bubba. This year has not started off how I would have wanted it to; it is going to be a hard one. We know of one surgery that Bubba will be having soon. There are LOTS of tests that Bubba will need. We won’t know our game plan until we meet with another dr. on Monday. Bubba’s other dr. is waiting for this apt. so that they can coordinate their tests and surgeries to limit the times Bubba has to be sedated. Basically what it comes down to is that they are worried about Bubba’s tummy, lungs, and heart. That’s right y’all my little man is getting old and his body is not being nice to him. I know that TTD is a mean and progressive illness but it is hitting Bubba’s little body fast and hard right now. I am grateful for the AMAZING team of doctors that he has. I trust them and feel blessed that after 11 ½ years of doing this we have built a good team to take care of Bubba. I am grateful for the sweet team in Maryland at the NIH. They have been getting LOTS of frantic phone calls from me and they do all that they can to help. This week I have gotten ANGRY, I have cried, and I have found peace in what the future might be for Bubba. Things are going to change and that is OK. With all of this change there are some things that are constant 1) Bubba’s sweet smile and attitude 2) My little family  and our love for each other 3) My faith and testimony in a loving Heavenly Father that has been there to comfort me with each new challenge in Bubba’s life. I will share more about what is going on with Bubba once I know exactly what our first step will be. We have had some hard, pain filled, days BUT we have also had some pretty awesome ones as well. So, rather than go into all of the crummy details of the bad days I will share with you pictures from a good day. 

Today Bubba woke up feeling good. Hubs was working and I was feeling brave. So, we went on an outing with some friends to the Aquarium of the Pacific. Pretty fitting since my mantra for the week has been…. Just keep swimming.  Enjoy!