6 months

6 months ago.  It seems like yesterday we were sitting in a small exam room at the MDA clinic at Texas Children's.  It was the day our world turned upside down.  We knew it was bad when we caught a quick glimpse of Sam's CPK levels on the computer - 19,000.  That was bad.  I remember staring at Sam's neurologist and being mad at him for having to tell us the worst news a parent never wants to hear.  How could he say that?  Then after he told us, he kind of fell to the background and the room was filled with people.  A child life specialist took Sam to let him play.  Counselors came in.  Social workers were there.  An MDA representative was there.  It was so dream-like, it didn't feel real.  We were completely different people when we left the clinic that day.  How could we ever be happy again knowing what Sam has to go through?

Fast forward to today and it still hurts.  It really doesn't get easier.  At least, not right now.  We force ourselves to have happy days because we have no choice.  We have to make every day the best day ever for Sam.  And for us.  We have bad days too, more than we used to prior to January 11, but it's a slow process.  There's still a lot of crying in the shower or while driving alone.  Duchenne consumes our daily lives.  I can now honestly say that when I'm explaining DMD to people, I can get through without crying.  There might be a little bit of eye watering, but I no longer make people extremely uncomfortable by sitting down and sobbing on them.  I think my hardest moments, as someone who is now a DMD parent (the worst club in the world), is that no one understands.  Our parents don't understand.  Our siblings don't understand.  Our friends don't understand.  Feeling like we've been dumped on a deserted island comes with the territory, I suppose.

Other hard moments come and go when friends or even acquaintances tell me "I've been praying for Sam".  I love that people we hardly know take time out of everything that is important to them to pray for us.  But some days a prayer isn't enough.  Some days I don't want to hear that - I want you to find someone to save my son.  Obviously it's not rational.  The reality is having hope and prayer is the only thing that anyone can do.  It's all we, as his parents can do.  Trust me, no one has prayed harder than I for some kind of mistake or to just let me take Sam's place in all of this.  At this point in this process, faith and prayer only goes so far with me.  If I can't touch it or see it, it's not going to help us today.

Some challenges we've faced in talking about DMD is that people think we're talking about MS.  Or that people immediately dismiss this like Sam has the flu or something.  This is a very real, horrible disease and there is nothing that anyone can suggest to make it go away.  Explaining to people that there is no cure seems baffling to them.  Nick and I read an article several months back about a dad whose son has Duchenne.  He wrote these words like he was looking right at us:  "having a son with DMD is like watching him drown and not jumping in to save him".  Our son is drowning and there's nothing we can do.  That is exactly what this is.  Recently, we met a couple whose daughter has diabetes.  And I was jealous!  I can take diabetes over this any day.  As horrible as what I'm about to write sounds, wishing Sam had cancer crosses our minds frequently, too.  At least then we could fight, it would be awful, but he'd have a chance.

In an effort to keep Sam healthy and as safe from injury as possible, I have come up with, at times, the most ridiculous house rules.  Sit on the furniture correctly (well, this one is pretty normal).  Slow down.  Always be really careful.  Bedtime is strictly at 7:30 (the steroids make him super grouchy and sleep is the only thing that helps).  Don't touch each other while running or playing.  Everyone off the stairs while Sam is on them.  There are more, but you get the gist....I hate myself for being this person!  If he starts crying, I have no idea why and so I assume the worst immediately.  I've always been wound a little tight to begin with, but DMD has pushed me to a whole new level of crazy.  Play dates at our house are definitely not the same anymore.   I worry that this will start to effect my friendships.  Who wants to go hang out at the crazy lady's house? - no one most likely.

Nick and I are seeing a grief counselor.  She is really helpful.  She has listened to us cry, and get mad, and (start to) learn to accept this.  As wonderful as she is, she has admitted that she has no idea what we are going through.  She's helping us be good parents, be good children and stay a solid couple all while grieving.  And it's not easy.  No one knows better what I am going through than Nick; and vice versa.  She's helping us see that this isn't just happening to us.  It's happening to our family, our friends, Sam's teachers, Sam's friends, the community.  Which is why, I like to think, people don't say much more than "I'm sorry".  Or in most instances, utter silence - not a phone call or an email.  It's hard for them too, and learning to understand that has been tough.  We were told it's very important for Sam to form close friendships early on.  It's easier for his friends he's known for longer to know that while his body is getting weaker, he's still Sam.  He's still their buddy, just now he's slower, or eventually, in a wheelchair.  We have had a lot more friends come to the house to play in the recent months.  Love hearing him play with his friends (and not just playing with sister and her friends).

Speaking of Caroline, she is such a caring and concerned sister.  It didn't take long for her to grasp the whole picture.  She checks on him at night.  Helps put his leg braces on when we have babysitters.  Tucks him in his bed after us.  She recently started talking to her friends about it.  Which is sometimes concerning because she tells them EVERYTHING - then you see the look of horror and confusion on the friends' faces.  Once I figure out what they're talking about, I usually interject with "We really don't know what's going to happen" or "We hope really soon there will be a cure".  It's ok to talk to your children about Sam - he knows he has a muscle disease.  He doesn't know the end result of the disease yet, but there's no need to tell any young child that.  Caroline just happened to figure it out.  Unfortunately, it won't be too much longer until Sam starts to question why he's different.  It's a day I think about all the time.  It breaks my heart that one day soon Nick and I will have to confirm that to him.

Nick and I have been to every website about Duchenne.  I know more than I care to admit about genetics and statistics.  We've listened to every drug therapy web chat.  Researched government funded health plans and clinical trials.  It feels like a job just trying to keep up with the breakthroughs and news that comes out about DMD.  Some of the news we find is encouraging.  Some of it is not.  We have to have hope that before Duchenne takes over, there will be a cure.  It's all we have.  We have hope and time on our side.  For right now steroids, nightly leg braces, vitamin supplements, therapy and physical activity help keep him as strong and physically capable as possible while we wait.  

Thank you to everyone who has supported PPMD or MDA.  Your donations are touching.  Your kind words and love help us on the darkest days.  Your prayers are always appreciated.  Your friendship is irreplaceable.  I hope my yearly update will have some happier moments and more news that will help Sam and all boys with DMD.

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.

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! 

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.