Kneeders

As a habit, Matt usually 'airplanes' Piper to her bed at night. She absolutley loves being lifted up on his shoulders and zoomed around the house before landing in her bed. Last night, Matt was heading to the store while I got Pipe into bed. Before he could leave though she asked for their nightly ritual but got a little mixed up - "Daddy! Can I go on your knee-ders?!" :D

I'll need a Pinky-swear

As he lies in my lap

And together we sway

I rock him to sleep 

And meanwhile I pray:

"Dear God, I know you can see us

And you're watching from above

Filled with sadness for him, as we are,

And equally in love.

I've never once asked You "why?"

Nor questioned if You were near. 

But I do have one request tonight, 

I pray that you will hear. 

When it's time for You to call him home, 

And my hope turns into despair,

I will need more than a promise from You,

I'll need a pinky-swear...

That you will hold him close to Your chest,

And say "I love you" all day long.

That you will rock him 'til your knees get sore,

And sing his favorite songs.

Tell me that You'll keep him safe,

So I will not be distressed.

Tell me that he'll will get his wings

And tell me he'll be blessed.

Let me know he made it safely,

Without a single blister or bleed,

Let me know that you will do MY job,

To fulfill his every need.

I have to know that you will love him,

Just as much, or more, than I do.

And when he finally speaks a word,

That You'll record it so I can hear, too.

My buddy is going to need Your help,

With so much yet to learn.

Like using a spoon, writing his name,

And having to wait his turn. 

God, please be patient when he tries,

For he's such a sweet and loving boy.

Please give him every thing he wants,

But make sure he shares his toys.

These are things I'll miss out on,

Like no Mommy should have to do. 

So don't let one milestone go unnoticed,

Please, I'm begging You.

He likes Elmo's ducks, The Three little Pigs,

Shoo Fly and Counting to Four.

Big Green Tractor, Rise and Shine. 

And when they stop, he'll tell you "more."

He holds certain toys in certain hands, 

And says yes with a big smile.

Please spend some extra special time,

And talk with him awhile.  

It breaks my heart to have to think

That he won't graduate from school. 

Or go to prom, or have kids of his own,

Or even break a single rule.

Tell him for me- please don't forget,

That I wanted him to stay. 

That I tried and tried to ease his pain,

But it was only YOU who knew the way.

I know you have a choir of angels,

Who play music while they fly.

And if they need a drummer boy-

Well, my Tripp, he's their guy!

You've probably seen it for yourself,

That he's one brave kid, indeed.

But he'll be scared if You have to leave,

So stay with him, I plead. 

If he has to go to Heaven first,

I'll make one promise back to You- 

I'll miss him every second he's gone, 

And spend the rest of my life trying to get there, too.

I hope that's not too much to ask,

And I trust You'll do your best. 

To fill my spot, just temporary, 

And answer my requests.

Thank in advance, Dear God.

Because I know You're a busy man. 

I trust in You and in Your Will

And know You have a plan."

Words just simply can't express

To my only son who just turned two-

How very much my heart will ache

If that rocking chair is without you.

So dear sweet angel baby of mine, 

If we ever have to say goodbye...

I'll rock you in my heart forever, 

Until we meet again in the sky. 

Written by Mommy

7/14/11

Great Expectations

I know, I know - I have some explaining to do!

A month and a half of being absent from my beloved Montage cannot just be excused, right?!

Well, try this on for size!

It all began one day in May with this:

Which in turn was inevitably followed by lots of this:

Soon it was time to tell our families, so Matt made these shirts for us girls so we could surprise them!

And so here we are 12 weeks later. Homeschool is at a stand still. Housework is at the bare minimum. Matt has been making most of our suppers. The smell of onions and ground beef make me want to vomit. I go to bed at 8 o'clock some nights. Needless to say, blogging has been on the back burner!

But its funny. Once that first trimester is in hindsight you suddenly feel better! Just like that!
So I'm blogging. I baked muffins today. I made supper all by myself and resisted the urge to gag when I chopped garlic and cooked chicken! Pipe and I played an ABC game. I even cleaned the toilet and changed the sheets this week! Things are looking up!

I guess that means I'm sorta back. Not making any promises but you're likely to hear a bit more from me over the weeks to come.

You've been warned!

Charleston Recap: Quick Version

This is the quick Charleston recap, as we just flew in and I don't have time to shuffle through 200 pictures for this post.  Also, my pantry and fridge desperately need to be restocked or we're having Mich Ultras and swiss cheese for dinner.  Hence, list form:

1.  Flying was a major hassle. 

2.  This girl could live on grits and sweet tea.  Oh. My. YUM.

3.  Bathing suits should be brought whenever you're out and about in Charleston, as you never know when you might happen upon a public fountain.

4.  The heat was insane.  {I know, y'all warned me!}

5.  Our hotel was all kinds of awesome.

6.  Hymans, Jestines, Toast, Barbara Jeans, and the Chucktown Tavern all proved to be winners.

7.  We never made it to Kaminsky's.  Boo.

8.  The southern hospitality was out of control. 

9.  Major kudos to the downtown Charleston Fire Department for the free tour.  You guys rock!

10.  Next time: Sullivan's Island.  {Or somewhere closer to the beach!}

Will be back with more deets later :)

All Cracked Up.

It's summer.  It's hot.  And my wardrobe must function accordingly.

I loooooove sundresses (and, really, all dresses for that matter), and long for the months when I can wear a dress without leggings.   They're so fun and feminine and unrestricting.  If Becks wasn't {still} sleeping in our bedroom right now, I'd take a picture of my closet and you'd see dress upon dress upon dress.  You'd also see that I am a lousy housekeeper and an even worse launderer.

Also, there's another reason I love dresses during the summer.  I HATE SHORTS.

I hate them. So much so that I haven't purchased an actual pair of "real" shorts (i.e. not Sofee cheerleading shorts) in years.  I've tried to like them, I really have.  I try them on in the stores and then immediately think These are so dang uncomfortable!  and peel them right off.  When I was little, I once described a wedgie to my mom as being "all cracked up." And, that right there pretty much accurately describes the main reason I avoid shorts. They consistently leave me feeling all cracked up. 

Further, and I never imagined I'd say this, but all the shorts out right now (mainly the ones at Target) are *so* stinkin' short!  {This coming from the girl who couldn't get short-enough-shorts in highschool...and probably college.  Ahem.}   It doesn't help that I'm borderline behemoth (5'10"ish) either, so shorts are even shorter on me. For the record, I've tried shorts from Banana, GAP, and Ann Taylor, too.  No dice.

But, you see, I have all these super cute tops that I might compromise the feeling of cracked-up-edness for, but they cannot be super-duper-show-your-heiney-short. 

So, where on Earth is everyone buying shorts from these days? 

{Y'all were so helpful in directing me to all the hot spots in Charleston, that I'm for certain you can help me out here, too!!!!  Thanks so much, btw!!!!!}

PS.  I was going to add an image to this post, but Googling "booty shorts" turned up less than appropriate results.  Happy Friday :)

Recommendations, please?

Sometime this summer we are visiting the state represented by the little flag above.  Charleston, to be specific. I've never been and would *love* to know where you recommend to go or what we should do while we're there!  Any and all suggestions would be greatly appreciated :)

Also, suggestions for flying with a three-year-old and carting a carseat through the airport.  Because you can imagine how much fun that's going to be. 

Muchos gracias!

Elmo had four ducks... quack, quack, quack, quack!

This song has played in Tripp's DVD player so many times in the past week that it's the only possible thing that I can think of for a title.  It's all I hear ringing in my brain all day long.  I even dream about Elmo's darn ducks... 

Little man has been SO high maintenance lately, bless his little angel heart (and to some of you up North, I know "Bless your heart" means something ugly... but to me it literally means "Bless his heart"- I'm not cursing my child :) haha.  He knows exactly what song/CD he wants to listen to- it's just the "us figuring out which one he wants" part that is tricky.  About 95% of the time, it's Elmo's Ducks... but every now and then he likes to switch it up and we have to guess which one he wants until he finally smiles (which means "yes").  And he may only want to listen to one song on that CD once or maybe 25 times in a row, then on to the next.  

And then the next game is figuring out what he wants in his hands to hold (while he's rocking).  He only hold certain toys together at the same time, and only hold certain ones in each hand.  For example, when he holds Big Bird and Elmo together, Big Bird has to be in the right and and Elmo in the left.  

  And usually we can guess easier by what he's holding in his hands.  If he has a duck- it's "Elmo's ducks", Big Bird- it's "Big Bird's song," Ernie and Elmo- it's "One Fine Face" (a song that Elmo and Ernie sing together.  Get my drift?  Ok, now I know that you guys officially think I'm losing it.  Don't worry... I think I am, too.  Actually, I'm positive that I am, little by little. 

Oh my little sweet man is breaking my heart these days.  The days are passing by so fast... and not only is his disease progressing and his sores and things getting worse, but I'm having a lot of guilt for not have taken the proper steps "education-wise."  I feel like I should have been having speech therapy, physical therapy, and occupational therapy in here over a year ago.  We had OT while we were living in Norco, but after the move, I never contacted anyone to get them here.  And yes, I know I've had A LOT going on and on my plate, but that's no excuse.  Little man's needs should have come first.  I'm in the process of getting them in now.  Better late than never, I guess.  

Hopefully they will be able to help us a lot with the "communication" part.  It's so frustrating for Tripp and sad for us when he's trying to tell us something that he wants and we can't understand.  He's older now and VERY opinionated (I know, surprise surprise), so we need to have a better means of communication going on other than just "guessing" what he wants.  I'm hoping we can try some type of comunication board.  

Medically, I would say right now (today) he is stable.  Our sweet,  super awesome home health nurse, Kati came last week to draw Tripp's blood again.  Everything went really well- I was VERY impressed at how good she was (but wasn't really nervous at all because she works in the PICU at Children's hospital).  Anyway... we got the results back :

BUN- 33    Normal 6-22

Albumin- 5.1     Normal- 6.3-8.2

WBC- 22.7    Normal- 6-17

HGB- 10.9    Normal- 11.3-14.1

And a few other labs were just a little off- but overall I was VERY impressed considering everything he has going on how well his labs actually were.  

E X C E P T:

His Platelet Count was 1.322 million.

The normal range is 140-400 thousand. 

The last time we drew his labs in October, his platelets were at 900 thousand and Dr. Defusco was very concerned- so I'm not quite sure what she's going to say or what we are going to do about it.  I haven't heard from her since we've gotten the results back because she's on a VERY deserving vacation! :)

Your platelets are what help your blood to clot when you cut yourself or damage a blood vessel in any way. 

 I am no doctor, nor am I a platelet count expert- but I am a nurse, so I do know that a very high platelet count means thicker blood, which means less circulation, which means a high risk for a thrombosis (a blood clot), which could cause a stroke or heart attack.  In Tripp's case, I think it could have a lot to do with why he has so much trouble breathing and why he is so short-winded when he stands up to play.  A higher number of platelets are common in EB and other things such as anemia (which he has as well), leukemia, cancers.  I guess it's the body's way of adjusting.  And in EB, it's almost a good thing, because when Tripp has a bleed, it almost stops immediately.  Otherwise, he would be losing a lot more blood than he is now.  BUT, being THAT high is not good- and I'm thinking could get borderline pretty serious.  But I'll have to wait and talk to Dr. D and let you guys know what she says.  

Baths have been bad again.  Not so much the "in-between" part, but the beginning and the end now (for some reason) are just horrible.  Lately when we sit him up to do his arms, he just cries and cries and makes himself so upset.  I encourage anyone who wants to know the true meaning of pain and suffering to come join us for Tripp's bath.  I would rather someone cut of my right arm every other day than have to put him through that.  I'm serious.  Mom and I have to psyche ourselves up mentally before we do it.  And I know it's the scariest, most awful thing for Tripp.  I hate that for him.  I get a sick feeling in my stomach on every bath day.  And I know he can sense when it's bath time, too. 

But things are just okay around here as far as Tripp is concerned.  The days just consist of making him as confortable as possible and doing anything we can to make him smile.  

Thank you all again for the continued love, prayers and support.     

Just one side of my poor baby's leg.  

See why he gets whatever he wants?? :(

Love,