update

We should really call this post "why I can't remember what happened 5 minutes ago". I'm going to combine the last week in April and the rest of May.  Not because it will help out my very few readers, but because I'm pregnant and really lazy.

At the end of April I got a call from our genetic counselor about the results of another genetics test we elected to do with a different lab.  The lab, Athena, has the only patented technology to just detect Duchenne.  The lab we used the first time, Baylor, used a test that detects all sorts of conditions, Duchenne being one of them.  The purpose of the new test was to see if this lab could detect the gene mutation using their technology, since they will be running the genetics screening on #3 when he arrives.  Hadn't really worried much about it until I got this call.  She asked if I had talked to Sam's dr and started going over some of the basics of the newer results: yes, it detected DMD; confirmed the deleted exons were 48-50.....she said some other stuff but by then I stopped listening.  Ummm, what????  In January, we were told Sam has 5-7 deletions (which is rare).  You could hear her flipping violently through papers and confirming that the original lab did find he had DMD with deleted exons 5-7, and then she hung up on me.  I'm standing in the middle of Target staring at my phone thinking "what the hell just happened?"  Long story short, the first lab was wrong.  This is a total game changer.  Scientists are developing a drug for exon deletions 47-51 as I type this.  It's in Phase III clinical trials now and the results from Phase II were very promising.  There is a light.  He still has DMD, which really really really sucks, but there's hope.  I can't remember the last time we received good news and cried tears of joy.  It was a good day.

That was the same week of the MDA Muscle Walk in Houston.  The only word to describe this event is overwhelming.  Sam's Soldiers showed up in the masses.  Family and friends from out of town.  People who I don't even know.  People I just met this year who don't even know Sam.  His teacher and school staff!  An entire varsity soccer team who got up early on a Saturday, designed their own shirts and raised over $1100 for a little boy only one of them knows...I was so touched.  There are really no words.  We didn't win the prize for most money raised, but believe me, the $12k we did raise is nothing to sneeze at (we were 2nd place BTW).  I'm pretty sure we had the largest team there - 132 people.  All for Sam and his fight.  I love you all and there's really no way to thank you for being there.  Everyone in their Sam's Soldiers shirts is an image I will never forget.  At least once a week when I pick up kids from school, I'll see a child or a teacher wearing their Sam's Soldiers shirts and it makes me smile.

 Family from Austin came in

This is what was so overwhelming - and it's not everyone.  Sam's Soldiers came out in force, there were over 130 of us!!!

The weekend after that was Caroline's First Holy Communion.  All of Nick's family came in for this.  It was a good weekend.  The cousins got to play.  Shannon and I got to catch up.  Nick got to hang out with his brother.  It was fun.

 My pretty girl.  She looks so grown up here.

This is my absolute favorite picture ever!  Sam was so mad no one brought him presents that he pouted in every photo.  He's not rotten at all...

My beautiful nieces (missing: Sam and his bad attitude)

There we go!  I don't know what Nick told Sam after the above pictures were taken, but his attitude really turned around!

Caroline and her Parrain

Back in March, our friends, Cary and Will, agreed to help host a party that benefits Fall Creek Elementary.  We plan it, pick a date and then put it up for bidding at the annual gala.  People attending the gala bid on it and show up to the party ready to be entertained.  They have tons of these parties to bid on too: tequilla tasting dinner, guys poker night, ladies luau, and my personal favorite, adult field day.  We chose a murder mystery party theme.  It was SO fun.  We served lots of yummy food, made a ton of hurricanes and assigned the 10 couples at the party characters to play when they arrived.  Freaking hysterical when you start drinking hurricanes and pretending to be someone else.  Being the only sober one in the room was very entertaining for once.

Nick's idea to rename the hurricane.  Seemed fitting 

The murderer and the secret spy 

He wishes... 

Uh oh!!!! 

Thanks for hosting with us guys!

School is ending VERY soon.  Caroline gets out June 7th and Sam gets out May 31st.  I've been making calls trying to get these kids into day camps, VBS, swim lessons...you name it, they're in it.  Got to keep these kids busy this summer.  I told them the other day that the only reason we are leaving the house this summer is to drive them somewhere with A/C or to get my fat ass in the pool.  

Coming soon...family vacation post in June.  #3 news.  Baby shower in July.  

Unloading

HELLO there.  Let's get right down to business.  I've had a lot on my mind lately.  Please note I started this post in April.  There's really no excuse.  Just not enough time.

I had a nightmare dream about what life would be like getting 2 kids ready for school (at 2 different schools) with a newborn.  It was utter chaos.  I can't talk about it yet - I remember being stressed and crying and screaming.  I woke up sweating.

I won't even go into how much weight I've gained.  I'm not really surprised, I have absolutely no will power when it comes to food now.  And I will add that being Caroline's GS troop cookie manager was not good, my friends.  Not.  Good.  Sweets and onion rings is all this mama wants at the moment.

We took our annual bluebonnet pictures this year.  With the dog.  It was like herding cats.  Is it too much to ask that I have everyone looking at the camera at the same time?  It's not hard.  I took 278 pictures.  6 were decent and 1 was good enough to print.  The dog did better at sitting still than the kids.  Not kidding.

Ok guys - FOCUS!  Cannot tell you how many of these we have.

Dude has some serious dancing skills

There we go.  And yet as I look at this, Sam still looks as if someone is holding a gun to his head to make him smile.

Good boy!  Walked him over to the flower patch, told him to sit and then took his picture.  If only it were that easy with the kids.

I've been doing a little house cleaning {well, not a real house...and certainly not mine}.  I'm actually thinking about turning off Facebook, but the only thing stopping me are the updates for Sam's page.  Simplifying things.  Clearing out the clutter and junk in my head.  Living in the moment with the kids instead of being attached to something that doesn't matter.  Starting to see people who they really are for the first time.  Decided I'm done listening to people whine about how bad their life sucks.  I would KILL to have a day where Starbucks messed up my coffee order, therefore my day is ruined.  Don't get me wrong, I understand people have crappy days and I even get that people have things going in their lives that, at that moment in time, sucks.  Really bad.  My life isn't the only one with terrible news in it.  But I feel like most people don't understand perspective.  It's the ONE thing about Sam's diagnosis that has made me see things for what they really are.  My sympathy for others who have the ability to change things themselves no longer exist.  Put on your big girl panties, be a grown up, and make a change.  Every day I worry about whether or not my son will be able to walk downstairs the next day by himself, or that the next time he falls he won't get back up.  You may think that's really not a big deal, but I doubt there are people who would trade places with me.

A few weeks ago I started having heart palpitations - seriously.  Had to go see a cardiologist and get a holter monitor.  I started thinking - back in August they thought I was having a stroke, now I'm having chest pains...did someone forget to tell me I'm 65?  Thankfully, everything was fine.  I'm guessing stress, but it's just a hunch.  

This house isn't going to get ready for a baby by itself!  Everyone is moving bedrooms upstairs.  We're turning the media room into a guest suite.  Caroline is moving into the current guest room.  Sam will move into Caroline's room.  #3 will get Sam's room.  So there's lots of painting, building out shelves in closets and moving.  Lots and lots of moving...we could use a hand or 10, so if you want to help out I'm sure Nick would properly compensate you with beer and/or manhattans (after the heavy lifting, of course)

Have to brag for just a second: Look at what a rock star my hubby is!!!  

He built this.  And it looks awesome.