Monday, January 30, 2012

Photo Challenge | Oh So Silly!

Over at
the challenge this week is Oh So Silly!

I selected this photo of Regan pretending to be her Daddy!
Oh, I LOVE my Silly little girl! She makes my heart smile. :)
Head on over to I Heart Faces to see the other Silly photographs.

Sunday, January 29, 2012

Only in our home.....

are Sunday afternoons spent
making Wheel Chair trains. :) 

Saturday, January 28, 2012

So much to tell y'all! {and a giveaway!!}

 There has been so much going on with our sweet Bubba that I have gotten behind on my updates.

1st thing I wanted to make sure I shared with you... it's pretty exciting y'all! Over at I Hear Faces they announced the top ten most memorable photos of 2011. Guess who was picked for one of those photos! It was this picture that Hubs snapped of me cuddling Bubba after one of his surgeries. So, technically I did not take the picture, all though I did edit it. So, I will give HUBS a shout out for this one! He is so proud of his "Major award"! Can I just tell you that I am tempted to go and find a leg lamp to bring home to him. He won't let me forget about his "MAJOR AWARD".  ;-)

2nd There is an amazing new magazine coming out soon, The Sandbucket. They were holding a photography contest focused on talent.  All of the photographs that were entered were AMAZING!! So, when I found out that our photograph won I was pretty excited! The e-mail letting me know that our photography had one could not have come on a better day.... Bubba was sick and we had been in the doctors most of that day. Bubba had some HUGE supporters on FB. :)This is the image that I entered and what I wrote with it.
When I started going through my photographs I naturally went to the ones of my daughter dancing first. That would be the obvious choice, right? As I sat here and gave it more thought I decided to go a different way with my entry. I have a feeling that most entries will be of obvious, beautiful, and even difficult talents, well, not mine. When my, 11 year old, son was born we were told that he would never walk, talk, or do much of anything in his, what they believed to be, short life. I watched as my sweet little baby fought to learn every basic skill that comes naturally to most. He did not even start sitting up on his own until he was three years old. I remember crying as I placed my little boy in a shopping cart seat for the first time. Something as simple as holding his head up, sitting without help, or swallowing were quickly becoming amazing new talents in our home. We cheered each time a new skill was learned and were amazed at his constant desire to prove the doctors wrong despite all of the many obstacles that life placed before him. I will never forget the day that I turned down the long, cold hallway at Collin’s school to see my son doing the unthinkable; he was taking a few steps. I stood there with tears in my eyes as his teacher helped him to show off his newly learned talent. Later that year he was honored by our school district for being “the most inspirational’ student. As they described his difficult life I watched my inspiration walk across the stage in his little tux as he showed off not only his huge smile but his new found talent, walking. Everyone in the room clapped with tears in their eyes. He was shaky and only managed to take a few steps but he made it to John Wooden, where he got his award. It was an amazing day for this mother. I was able to see my child honored for his talents, a day I thought would never come. I knew that he would not play a musical instrument, sport, or be in academic decathlons, so I had pushed those hopes back, way back. It wasn’t until that night, as a very pregnant mommy with our second child, I heard my sweet little boy being honored for his strength, amazing attitude, and ability to never give up. I realized in that moment that he might not play football, sing, or play chess but the talents that God has blessed him with are much greater.

So, here is the awesome giveaway!!! The wonderful and creative team at The Sandbucket asked me if would like to hold a giveaway on my blog. Of course I said YES! Seriously, check out The Sandbucket, you are going to LOVE it! There are so many wonderful articles, tips on photography, your home, wardrobe... yup, pretty much everything! Oh, and if that wasn't enough to get you excited about it.... Bubba's picture is being featured in their first issue!!!!! So, here's how to enter to win a FREE digital copy of The Sandbucket!!

1) Head on over to The Sandbucket take a look around and come back and leave a comment about one thing you love about their website.
2) Leave a comment sharing one of the talents that you have been blessed with.
 3) Head on over to The Sandbucket's Facebook page and "Like" them and then come back and leave a comment letting me know.

I will randomly select a winner on wednesday Feb. 1st. Good luck!!!!

Monday, January 23, 2012

Rainy Days

What do you like to do
on Rainy days??

We like to....
play in bed.... 
and Laugh!! 
Our poor lil' pup just does not like the rain much at all.

So, What do you like to do on Rainy Days??

Sunday, January 22, 2012

Feeling the {LOVE}

I LOVE Valentines Day!
I LOVE love!
I LOVE that yesterday Bubba was feeling well enough
 for a 5 minute {not joking.. 5 minutes} photo shoot!
I LOVE that Regan still let's me do fun Valentine's Day Cards.
I LOVE that some of these pictures turned out OK.
So, maybe they are not perfect... but neither are we...
and I LOVE that! wink!

 The funny thing about 5 minute photo shoots.......
When he's done.... he's DONE!!
and he has no problem letting you know it! wink! 

Thursday, January 19, 2012

My knight in Shining armor

What girl doesn't dream of their Knight in shining armor? Seriously, if you have ever watched The Princess bride or Monty Python and the Holy Grail you have wished for your Knight... right?? Ok, so maybe those movies didn't do it for you... How about a Knight's Tale?? On Christmas day my dream of my Knight in shining armor came true!!! Jason's dad collects swords, shields, knifes... all kinds of cool stuff. He will give talks about putting on the armor of God and use the real deal as his props. Well, my sweet Mother in law noticed that he was missing the breast plate and felt the need to complete his collection. So, she got him a breast plate and that net/ chain thing for Christmas. I really want to know how you go about buying a breast plate... seriously, do you just Google it?? I am not sure exactly how it happened but my sweet heart quickly became the model for all of us. They placed the breast plate and head thing on and then all of sudden a sword would appear... then a shield.... and before I knew it my Knight in shining armor was standing right in front of me. :)
I knew long before he put this armor on that he was my Knight in shining armor. We were talking with friends last night and I was joking that Hubs was not my type at all when I met him. The truth was... well... my type was pretty awful. ;) So, of course he wasn't my type... he was better! I can't tell you how many times this sweet Knight of mine has come to my rescue. There have been countless times that he has rushed home from work after a frantic phone call about Bubba. His greatest weapon is that he holds the Priesthood and is able to bless our home and family with it whenever we need him to. He is truly my best friend. I miss him when he is away from me and I can't wait for his return. I love that after 12 short years of marriage I was finally able to see in real life what I see in my heart every day.... my sweet and adoring Knight in shining armor. I am so grateful that he has been by my side with everything that is going on with Bubba. I couldn't do it with out him. I love you so much Jason!

Ok, so was that last part a little to sappy for you??? 
This is how disputes are handled at the Presley house. 
Yes.... my very own scene out of   Monty Python and the Holy Grail!
Really what more could a girl as for! :)

Monday, January 16, 2012

So glad that today is over......

We might have hard days....
BUT we have a good life!!!

Today was another HARD day at the hospital for Bubba.
He was such a trooper!!! 
BIG smiles all day and high fives to everyone he met.
Now, we wait for results from x rays, echo, and LOTS of labs.
(We tried to snap some pics with the cell phone. One of these days
 I want one of our photog friends to tag along and truly  document what Bubba's life is like.)
Then we will make a plan. Some changes are starting right away.
Things will be different and we will all adjust. I am not sure how I
will make it all work but some how it always does. :) 
 We were all tired by the end of the day and so glad that our day was almost over.
Not long after laying Bubba in his bed he starting crying out in pain. Regan could hear him and called me into her room. She then asked me "Mommy, why does Bubba always have to be sick?" I scooped her in my arms and we went out into the livingroom with the boys. I told Hubs what Regan had asked and then we did our best to comfort her. The TV was turned off and as I cuddled Regan and Hubs cuddled Bubba we shared our testimony of our Heavenly Fathers love for Bubba. We each did our best to explain to her but honestly none of us know WHY he is sick. It hurts my heart that Bubba has to endure so much and it hurts my heart that Regan has such worries at such a young age. We ended our talk with a family prayer. Bubba is the greatest teacher that I have ever had. Every day I learn something new from him, every day he touches someone new. There is nothing harder yet more rewarding than to be a mother.

Saturday, January 14, 2012

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!

Wednesday, January 11, 2012

Moves like this.......

should be illegal!! 
 Today we celebrated....
Not sure what we were
celebrating but we did!
{Ok, I got it we were celebrating..... a good day!}

Seriously, the running man is still cool right?? 
She get's her moves from us!
Did you know that Hubs and I met at a dance?
Well, we did.... I mean when you can........

Fist pump like this and........ 
do the robot like this how
could you not fall in love!?!?!?

What did you celebrate today?

Tuesday, January 10, 2012

A date with {bubba}

{playing with the phone while we were in between apt.}
This morning I told Regan about our day and that Nana would be picking her up from school.  I had to explain what Bubba and I had to do and she said "Mommy my dates with you are WAY FUNNER  than your dates with Bubba." Regan and I went on a date to see the movie we bought a Zoo last week. Oh, boy does she have that one right, her dates are WAY funner!:)  My fun date with Bubba today was at the hospital. We have had some worries and with those worries come tests. Bubba did amazing. Seriousy, he was a ROCK STAR when it came time to get him to do things that he normally wont do. Yes, by the end of it he had a girlfriend. While they were going over the results with me the Child Life woman was playing with Bubba, before I knew it they were off and having a blast in the halls. Bubba did not look for me once, he was FREE, with a pretty gal, and out of the testing area, he was happy! :) Bubba gave all of our new friends high fives and we were off to make an apt. with a specialist. This apt. will decide our next step. Today I have gotten angry, I have cried, I have prayed, and I have still found things to smile about. Monday will most likely start Bubba on a new journey. Heck it will start me on a new one as well. I will have to learn new skills to be able to care for my little man and you know what.... as scary as it is.......... there is NOTHING else I would rather do than be a Mommy.  So, here's to better dates! {Ok, maybe not this week we have more dr. apts BUT maybe next week :-) } Tonight I will be a little sad and yes worry but tomorrow.... Oh tomorrow I will have a dance party with my kids! "Whenever I have a problem, I just dance because I realize that my dancing is worse than my problem." Is it bad that I like to have dance battles with my 7 year old? Is it bad that my favorite move is still the running man?? wink!

Our new Child Life friend had an I pad with Blues Clues on it to keep Bubba happy.
He LOVED that! :)

Saturday, January 7, 2012

A BIG ol' dose of Medicine.......

It is no secret that Bubba does not like to just sit around in the house. Before each break I have to plan out what we will do,this Christmas break was no different. I had it all figured out, every day there was something new and fun to do to keep the kids happy. We managed to have one fun activity with Nana and Pa Pa before Bubba got sick. Regan was so patient with every passing day and new activity that wasn't going to happen. Jason and I wanted to take the kids to Disney at least one time while they were out of school. We were hoping to go on Wed. but it came and it was obvious that Bubba was NOT ready to do anything fun yet..... Thurs. came and he started to look up....  By Fri. our boy was BACK BABY! He woke up with a smile and was grateful to be feeling good. He was not 100% but he was doing SOOOO much better. So, we decided that one last dose of medicine was needed to get our boy back to where he needed to be. He needed some magical medicine that can only be found at Disney. :) We only went for a little over an hour becuase we knew that Bubba couldn't handle much.

My little Russian princess!!

 They rode two times in a row.
The first time I rode with them and the second I ran down
 to take shots of them from below.
I LOVE their little hands hanging over.

This is where things get EXCITING folks.
It's no secret that our Bubba LOVES roller coasters. How do we know if he can't talk you ask? Well, by that HUGE smile on his face while we are on them. Oh, yeah and the fact that we can't walk by one with out him taking his hat off, throwing it, and then reaching for the ride. Yes, he let's us know what he likes. :) Well, there is this BIG roller coaster that Bubba LOVES watching. You can just see him day dreaming as he watches it take off. Oh, and that SMILE!!! So, we were feeling brave. Ok... hubs was feeling brave, there was no way this chicken Mommy was going to do it. Hubs took Bubba on the California Screamin!!! I know CRAZY right!
 For those of you that haven't been to Disney you might be wondering what the big deal is.
Well, this roller coaster is HUGE!!! 
Oh, and it has one of THESE.
Yes, my baby boy was upside down!!!

When they took off my hands were SHAKING, I was so nervous!!
What if he doesn't like... it's not like they can stop it half way around.
Regan looked at me and said "Mommy my tummy is nervous!!!"
I told her that my tummy was nervous too.
The boys got back and I got a thumbs up from Daddy!
WAHOO!!! He said that he smiled the entire time.
I can't wait to go on that ride with him when he is feeling 100%.
After that exciting ride Bubba was worn out!
I took Regan to a store to pick out a "best big/ little sister in the whole wide world" treat
and then we were on the road headed home. :)