Wednesday, July 10, 2013

Random things I think about while getting up to pee for the 500th time in the middle of the night

It's that point in the pregnancy where no matter how long before bed I cut myself off from drinking water, peeing numerous times during the night becomes impossible to avoid.  While I'm up, I'm up for about an hour b/c I can't not think about anything while peeing.  Then the brain starts to warm up and I can't turn it off, so I'm up thinking about the STUPIDEST stuff on the planet.  It's very random, but here are some of the things that cross my mind.

1.  I think about this one more often than you'd think: 9 months my ass.  It's 10 months.  At least I'm not pregnant for 22 months like elephants.  But 10 months is long enough - it's practically a year!  Right now it feels like I've been pregnant as long as elephants, but I'm getting close.  Why do I know this strange fact about elephants?  We can thank being members at the Houston Zoo for 8 years for that one.

2.  I'm going to write a book called "Shit you don't say to pregnant women.  EVER".  What is up with the rude things total strangers say to pregnant women?  My ankles look great!  Should have yelled at the old lady.  Lately I've been told I must be having twins b/c "I'm huge", told my ankles are swollen, been told I must be having a girl because I'm carrying so low, asked if I was dilated yet...really!!!  Look for that gem on the NY Times best seller lists.

3.  I know it's a strange thing to think about at 3 am on the toilet, but no one has died this pregnancy.  (and no, I'm not talking about Nick)  Every time I get pregnant, a grandparent dies.  I have one left and so does Nick - so I hope they make it long enough to meet baby P.

4.  Every time I get up, it appears I'm adding things to the 'honey do' list for Nick.  Last night I decided all the windows in the house need to be washed.  Inside and out.  Like right now.

5.  A Whataburger with onion rings sounds really good.  Is this something I should wake Nick up for?  Will he be pissed?  Or will he roll out of bed and get me one?  It's a game I really don't want to play in the wee hours of the morning.

6.  Did I forget to take the clothes out of the washing machine?  Did I forget to shut the garage door?  Where is my debit card?  Is the alarm on?  Did I just hear the kids walking around - maybe I should check on them.  Did I forget to feed the dog today?  I think I forgot to take my prenatal vitamin....ugh - it never ends.

7.  If the dog farts, sneezes, breathes loudly or snores one more time, I will kill him!  How would I do that and where would I hide the body? (Nick's name is also interchangeable here too)

8.  Sam talks a lot about death.  Do you think he knows?  He asks all the time when he's going to die.  I bet he knows.  I think about that one a lot too.

9.  Need to remember to put _____________ on the calendar tomorrow.  Do I ever remember to do it?  of course not!

10.  Why is flushing the toilet the loudest thing ever at 2 AM?  I swear I just woke up the whole house. 

So...that's most of the stuff I think about.  Like I said all random, and surprisingly, all stuff I thought about last night!  Most of it is a completely normal thought process, some of it is kind of messed up.

Tuesday, June 25, 2013

Kindergarten!

Really, how did we get here???!!!  Wasn't he just a baby?  Talking about kindergarten for Sam has Nick and me a little stressed.  (well, maybe not so much Nick).  But we're at a crossroads with deciding whether or not to put him in public or private school.

Sam's situation is a little more complicated than the average kindergartner.  Sam misses a lot of school due to therapy and dr. appointments, and since he's got DMD - there are certain things about his education that need to be modified: like PE, recess and transitioning to and from the classroom.  So, we've met with the school district/school admin and had an ARD meeting and discussed IEP's....geez - the kid hasn't even started school yet!  There's already so much information and it's still summer.

Last year, we had him at Catholic school and absolutely loved it.  The school goes all the way up to 8th grade.  It's small - he would be 1 out of 30 kindergartners.  He's already way more ahead than where Caroline was when she started kinder.  But it's private school.  It's expensive.  They don't have to make any educational accommodations because of Sam's disease.  Meaning they can hold him back b/c he's missed a lot of school.  Or they don't have to let him take breaks during PE.  They don't have to have a plan to help him transition to the cafeteria or to recess.  I do feel like the level of education is better than it is at the public school, especially after my extreme hatred for 2nd grade this past year (I'll save that rant for another post, but we're giving it one more year).  

The public school in the neighborhood is close to home.  It's free.  He'd have a wonderful kindergarten teacher - we hope the same one who had Caroline b/c we loved her.  He'd have an IEP that gives him the tools and services he needs to succeed and to accommodate his disease.  But it's crowded - he would be 1 of 120 kids.  Someone has to watch him all the time at recess and PE.  I know, because I've been on the playground where there's 3 classes on the playground and one teacher watching.  There's no way there can be a set of eyes on him all the time, but if he falls we need to know exactly what happened so we can determine if it was because someone pushed him or if his DMD is getting worse.  Then what happens after kinder?  First grade was ok, but 2nd grade sucked so bad.  Are we going to go down this same road with Sam?  I know he'll be taken care of, but the number of kids in that school terrifies me and the things that can go wrong (and already have) can happen again too.

Granted, having a newborn with 2 kids at 2 different schools is so much harder than it has to be, so obviously sending them both to one school is the best choice.  But we really just don't know what to do.  Nick is a product of private school.  I am not.  I turned out ok, right?  He's ready to just yank both kids and put them in private school anyway; I think that decision is premature.  We've weighed the pros and cons, but at the end of the day it all seems to balance out.   

So for now, Sam is enrolled at 2 schools until we make up our minds.   He really wants to go to sissy's school.  Just don't know if that's the right decision for him right now.  

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! 

Wednesday, June 12, 2013

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!

Friday, May 31, 2013

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.