five

Sam turned 5 on June 18th, while we were on vacation - so this post is a little late.

Turning 5 was a big deal for me when Caroline turned 5.  It meant that she was no longer a baby.  It meant that she was starting kindergarten.  She was a big girl.  Sam turning 5 had a total different affect on me.  He's still my baby (for 9 weeks, 4 days and 13 hours - but who's counting?).  Even though he starts kindergarten in August (don't ask me where yet, because as of right now he's enrolled at 2 different schools), it feels like it took forever for Sam to get to 5.

Birthdays are supposed to be happy and I don't feel that at all.  To me, Sam's birthdays are an all-to-quick trip back to reality that our time with him is running out.  I don't even know how many birthdays we'll be able to celebrate with him.  5 more?  10 more?   The unknown kills me.  Every day.  But June 18th was the worst day to be reminded of the unknown.

He told me when he's five, he wants to ride a bike without training wheels.  He just recently, thanks to OT, starting getting himself dressed.  He's no longer afraid to take showers - really don't understand why he was afraid of them in the first place.  He turned into a big boy overnight.  We love him so much.  He is hilarious, and sweet (and sort of mean) and gives the best hugs ever.

Since we were in Tennessee for his birthday, we celebrated with family.  Went to the Dixie Stampede (which is like going to Medieval Times, but western themed).  It was fun.  Sam really thought all those people there were there for his birthday, especially when they all sang him happy birthday.

Maybe this year, he'll learn to look at the camera when I'm taking pictures...

So, he wants Chuck-E-Cheese for his birthday - and even though I despise the place and think it's a cesspool of germs - we'll go to CEC and like it (then bathe in bleach when we get home).  Because that's what Sam wants to do for turning 5.  Because he's a big boy.  

Happy Birthday, Samuel! 

eight

Caroline is 8!  Happy Birthday Caroline Mae.  (for the record, I started writing this post the week of her birthday, just now getting around to posting it)

She currently is into this preteen, obnoxious phase where she grunts and moans in protest if she doesn't like what she hears or is told to do.  It's fun.  She is super smart.  Sweet when she wants to be.  Creative.  Well behaved.  A great big sister (again, when she wants to be). Caring and sensitive.  We love her so much.

Being 8 years old got me thinking.  In 2 years, she'll be at the age where I told her she could get her ears pierced.  She is half the age she will be when she starts driving.  And in 10 years, she'll be leaving us for college.  Sounds like a long ways away at the moment, but 10 years ago Nick and I got married and it seems like yesterday....and here come the heart palpitations again.

Because I'm the worst mom ever pregnant and too pissy to have kids in my house for a birthday party, we compromised with sometime this summer I'll take Caroline and a few of her friends horseback riding, out to lunch and possibly pedicures - she settled for that.  Don't start feeling bad for her getting the short end of the stick in this deal, because the other agreement was that when she moved into a smaller room (so the boys can share a bathroom) that we would redecorate, get her new furniture and repaint everything.  And as luck would have it, she has very expensive taste.  Caroline isn't the only one not getting a party this year, Sam isn't either.  I'm too tired to have house guests, let alone little house guests.  Whether it's just for a couple hours or overnight...not happening this year.  

I digress....

Anyhoo - Happy Birthday Sweet Caroline!  (she hates that song by the way)

We shall call him...

Patrick Thomas.

We really liked the name Patrick.  And it seems to go well with the names of the other kiddos...traditional and not too popular.

Thomas is my maiden name.

So far he's being a total pain in the ass and doesn't sit still.  ever.  He's also still breech, so when he kicks me, he kicks me in the hoo-ha.  From the inside.  11 more weeks 2 days and 17 hours.  I can do this.

We can't wait to meet him though.  Sam talks to him all the time and pretends that Patrick talks back.  Today he said "I think Patrick is hungry".  Why?  Because Patrick told him so.  Hate to break it so Sam, but there's no way this kid is hungry b/c I feed it all the time.

Here's what I'm most excited about finally agreeing on a name:  monograms.  I love personalizing stuff.  I found these cute monogrammed pacifiers on zazzle.com that I know Patrick will not be able to live without.  I also have a slight obsession with jon-jons.  Particularly, monogrammed ones.  In my opinion, nothing cuter than a little boy wearing jon-jons.  So between now and D-Day, I will try my best at online shopping and sneaking my finds into the house unnoticed.  Good thing I have my own embroidery machine.

Another obsession I have is diaper bags.  Unfortunately for Nick, my taste in bags has been refined in the last 5 years, thanks to my BFFs Louis and Gucci.  (yeah, that's a hint).  This is my favorite part of preparing for baby....shopping - shocking, I know; picking out the perfect going home outfit; putting the crib together and getting all the bedding in it; designing the nursery....  For a split second, it makes me forget how uncomfortable I am.

Went to see the Dr. the other day and everything looks good.  Blood pressure was a little high, but with Sam, summer, vacation, Nick's new business venture, and all of the projects we have going on around here doc gave me a little break.  She did not, however, give me a break on how much weight I gained in 4 weeks.  But if you look at it cumulatively, I've only gained a pound a week - somehow explaining it to her that way wasn't amusing or up for discussion.   I did point out that it is WAY better than Caroline's pregnancy....where I got so fat I can't recognize "who that fat chick is" in pictures.  74 pounds.  Not only did it really look like I ate a baby, it unfortunately looked like I ate it's family too.

Still lots to do around here.  Painting...will it ever end?  I feel like I live at Home Depot - I'm there all the time!  The good thing about that is mama gets it done when Nick sends me by myself to HD.  Its amazing how helpful everyone is when you have a pregnant woman waddling around your store: I don't have to search for someone to ask a question, people are putting heavy things in my cart for me and employees carry things out to my car...maybe they're just worried about a full out pregnancy meltdown in the store?   

Speaking of painting, look what I did?  All by myself (with the exception of the varnishing b/c the odor was too strong)

We had this old dresser of Nick's when he was a kid.  (Sorry - got a little excited and took the drawers off before I remembered to take the official before picture).

Turned it into this!  Used the Zinser Stain Sealer stuff and painted over the original stained wood.  Didn't have to sand a thing!  Then painted it turquoise, put some updated knobs/pulls on it and now it's ready for Caroline's new room!

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.

It's a....

BOY!

Looking on the bright side of things, because of the unique situation we're in {I suppose one would call it that} we got to find out gender super early through this really cool blood test.  And in my book, the earlier the better b/c I'm a planner - so from the time the geneticist called to give me the news to the time Nick came home from work at 6:30 - I had everything picked out.  Nursery decor, paint and fabric samples and furniture all ordered.

Many have asked {or maybe have wondered and too afraid to ask} 'what if this baby has Duchenne too?'.  That's an absolute possibility - VERY small - but possible.  As you may or may not recall, I am not a DMD carrier.  Sam's genetic mutation happened spontaneously, so this baby has a 4.3% chance of having Duchenne.  4.3% is a tricky stat to think about...4 PERCENT (or per 100) is 1 out of 25 {embarrassed to say someone had to explain that to me}.  And since Sam's condition happens to 1 out of 3500, thinking about it that way seems daunting.  One out of 25 is way more likely to happen than one out of 3500 - and we already have the least likely scenario on our hands!  We brought this up at the last appointment we had with Sam's doctor.  He assured us {as did the genetic counselor we've been seeing} that this 4.3% is actually a very small risk. Without getting into it and confusing everyone - the percentage is taken out of completely different group.  The number they gave us comes from the number of women who are not DMD carriers, who have a son with DMD, who have subsequent sons with Duchenne.  So it would be very rare if this boy had it as well.  Get it?  yeah - I'm still scratching my head.  But since we've already won the lottery from Hell, we are having genetic testing done on the baby immediately after delivery {we'll have a genetics team there to collect the cord blood and send it off} we don't want to be surprised 4 years down the road again.  Knowing as early as possible about a potential DMD diagnosis is what we as a family need.

Kids are super excited...now.  The video below is of me telling the family {including Nick}.  Notice Sam's fist pump and Caroline slapping her forehead in disappointment.

Since we didn't find out the conventional way via ultrasound, I got the phone call from our GC and I kept it a secret.  The only person I told was the lady who made the cake balls.  I kept it a secret for 2 days.  Longest 2 days.  Ever.

Nick and I are excited because Sam will finally have a buddy.  Someone who can look up to him.  We hope Sam is his baby brother's hero.  Can't wait to see what Sam can teach him.

New Years Eve Surprise

So - I've been noticing some puzzled looks on a few folks' faces lately.  The kind of look where you know what they're thinking, but they don't want to say it in case they offend you.  I love that look!  It's so funny - becasue you know they're thinking "did she just finish eating 10 cheeseburgers? or is she pregnant?" - and I'm too much of a bitch to say anything b/c I love watching them try to figure it out.  

No - I am not getting fat.  Well, technically I am - but not because I just ate 10 cheeseburgers.  Yet.

Yes - I am pregnant.  14 weeks.  And while I'm still baffled, especially with everything going on with Sam, I still wonder how it all happened.  (for the record, I know HOW it happens, but really - how did this happen!!??).  This was SO not in the plan.  At all.

With all the doctors appointments and stress that occurred in November involving Sam, I clearly wasn't paying attention and may have had 2 Manhattans one night.  The night, apparently. So around Christmas, after getting all the Santa gifts out and getting into bed, I realized that I might be a day or two late.  Didn't think too much about it.  Then on our New Year's trip to Alabama it hit me - I was seriously late.  So I hopped in the car and picked up a pregnancy test (or six).  The thing didn't even take 5 seconds to indicate it was positive.  So naturally, I took 5 more.  All positive.  Shocked doesn't even describe it.  I was literally laughing like an insane person in the bathroom.  Not funny ha-ha laughing; scary, evil laughing that could only be described as someone who's just been committed to an insane asylum.

So, I was living in denial for a few weeks, thinking about how I haven't had to change diapers or wipe butts, or get up several times a night to feed a screaming infant in years.  Caroline and this new baby will be over 8 years apart!  What is wrong with me?  This was not the plan.  We were done.  I absolutely HATE being pregnant to top everything off.  I'm uncomfortable, I'm sweaty, I'm tired, I'm sick, and I'm not very nice to people (and I'm sure Nick would agree).  I totally get how some women love being pregnant, sadly I am not one of them.  Then we get Sam's DMD diagnosis, and I'm filled with even more doubt - how am I going to handle everything with Sam and a newborn?  How selfish was I to take away the few good years I have left with a physically capable Sam to take care of another baby?  All I knew is that at that moment in my life, a baby is something this family did not need.  Thinking back, I was so emotional and heartbroken over everything else, I forgot one thing...It's a baby.  I've done this before.  And I think I've done a damn good job with the two I've already got.  Anyway, by the 3rd kid the other kids practically take care of each other, right?  Sam is fine right now.  He's not going to be in a wheel chair in the next 6 months - or even in 6 years hopefully.  This will be okay - or so I keep telling myself.

Panic began to set in as I start to worry what if this baby has Duchenne too?  So I went through some genetic screening to see if I'm a carrier.  To my surprise, and I think to Sam's neurologists as well, I am not a DMD carrier.  While we're not in the clear yet, even if this baby is a boy the chances of another DMD diagnosis is very rare.  I think 4%.  We're still going through with genetic counseling and will get a full genetic screen on the baby before he/she is born to either give us peace of mind or to prepare us for another baby with a genetic disorder.  

So, that's my dirty little secret.  I'm knocked up.  Again.  Nick and the kids are so excited.  I've been very slow to come around, but am finally looking forward to #3.  I get to go shopping - because about 6 months ago I gave away EVERYTHING baby.  Get to decorate a nursery.  For once I'm not the one this year giving the baby showers.  There is good in it and I see it more and more every day.  No matter what, this baby will bring so much joy to our family who has dealt with too much pain already this year.