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Sunday, October 13, 2013

Ticking Time Bomb...

For three years, Romy's heart was doing great...in fact, we had started weaning her off her heart medication for about a year, and she no problems what so ever...

And then my hubby posted this on FB May 20th 2013...

"I am sooo very thankful for my wife Tamra Lords all the time, but especially tonight. Romy went into SVT(her heart condition) and my wife recognized it. Saved her life....don't know what I would do without my wife or my little Romy..."

This was the first time since the hospital that she had an episode.  It definitely freaked us out.  We were at the store when Oakley called us and said that Romy was complaining of a tummy ache when they were showering.  When we got home, she seemed better, so we didn't worry about it.  We were potty training her at the time, and when we put her on the potty for the last time that night, I noticed her neck.  It was just flickering like crazy.  I knew instantly what was happening, and remember just sitting there in shock for a couple seconds.  I then quickly checked her heart which was going way too fast.  I immediately took her in where they stopped and restarted her heart, and then watched her for a couple hours...but eventually sent us home.  

We followed up with her cardiologist who expressed that because she is three, and is still having this, that it will not be something she grows out of.  We then put her on medication again, and we were pretty confident that she would be fine, and that her episodes would stop...

But they didn't.  

We were blessed that the next time it happened my step brother Peter and his family were here, and Brian and I could both be there for her. 

Romy in the hospital (click here)
Romy in the hospital after converting her heart (click here)

I became more concerned.  Why would she have an episode ON medication??  She's never done this before!!  Her cardiologist upped her meds to the maximum for her weight.  Surgery was mentioned, but discussed that right now, the risks involved outweighed the episodes.  So we went on our way, this time a little more cautious.  More protective...more paranoid.  I want to check her all night, but know that it's not sane.  I never want to leave her, and know that it's not normal.  I start feeling like...well...a crazy person!!

...and then things normalize, and my heightened sense of fear eazes.  My bright little crazy girl just makes those fears seem so unnecessary.

But then, her heart crashes...again...like this last week:

"Yep... Again... And what broke my heart the most was hearing her say "I scared"... How does a mother not crumble to tears... And how can I not show how scared we are? I'm just so sad that we can't seem to keep her heart from doing this... And the what ifs... What if we weren't there? What if she didn't tell us? What if this happens and we don't catch it in time? I know that we are being watched over, but it's hard knowing I'm not in charge... Sometimes... I just wanna be... Even though I know that's not in her best interest..."

Romy in the Hospital Oct 10, 2013 (click here)

The hardest part is not having control.  Not being able do anything for her.  She is a ticking time bomb...and we never know when...or if...it'll go off.  This blessing of ours...this crazy awesome BEAUTIFUL girl...why can't I just keep her safe?  Why cant I just fix her??  Why do I have to share her??  I know...these are the selfish thoughts us parents have, and to be honest...I don't have all the answers...but guess what, I know I'm given this trial to find them out.  And I'm trying my hardest to trust in God...to know he has a plan, and that someday...it'll all work out...

....in the meantime, I'm okay with being human, and imperfect, and flawed.  I know that I'll always do my best for her...for all of my kids.  I know that my other kids suffer.  They have a lot of the same fears.  This last time her heart faulted we were at our friend's house...yet another blessing.  The kids were up playing with friends, and when we saw Romy having a problem, we were able to rush her out immediately.  I looked at my friend, and said..."Don't tell the kids".  I hate that they worry.  Upon returning, my friend, Tessa told us  that Oakley came down and asked where we were....and before she could answer, she got a look on her face and asked "ROMY?"

It breaks my heart.  Of course we just want our kids to have a happy life full of love, and no suffering...but then again...I know we don't.  I know it will be good for them...

someday.

So for now, I am back to the PTSD mom, you know...the crazy obsessive one that is worried my little time bomb might go off...

But that's my job...

To worry

To obsess

To Love...

Cause you never know when this girl:
Will become this girl:



Sunday, June 24, 2012

A Little Bit of This...A Little Bit of That...

Isn't that what life feels like sometimes...for some reason I used to feel like I had time for it all!!  Lately...I feel like I catch a little bit of this, and a little bit of that...

So I thought I'd share :)

My kids are so sweet.  In my world...a dandelion is a flower ANY day of the week.  There is nothing more precious than me sweet kids saying "Mommy...HERE!!!"  Mostly my littles...Blazer and Romy, but even Parker will collect them for me :) I hope I never forget their bright excited faces, and I've enjoyed weeks of it ;)


On to traditions...we have a tradition that began with Carter, and is now trickling onto the younger boys.  The last day of school, he can pick ANY hairdo he chooses...He has chosen the same "doo" for the last couple of years, and frankly...I find it AWESOME.  He is usually a completely mellow, analytical, "observe everything" kind of a kid....but he had been growing his hair for months to get the PERFECT hawk for the last day of school!!  Last year we had to leave it for a few days because of a terrible burn he received on his poor head, and this year, I thought...what the heck...he can let it hang for a while...but Brian cracked come Sunday, and couldn't let him show up that way :)  He's always telling me to just let him sport it...but he cracked this time!! LOL

(OH...notice how Oakley is almost as tall?? P.S. She can steal my shoes now too...talk about scary!  And we wont even get into the pre-adolescent tude we're starting to see....ay yay yay!!!)

Well...the last bit of "bits" that I want to share is Fathers Day.  I'm not one for cliche gifts...in fact...I do everything necessary to avoid them, or receive them...I don't know why.  I feel like if I give a "typical" gift on a "typical" holiday...then it doesn't mean anything...

 I broke my own rule.

I gave my husband a grill.

Our FIRST grill....well, that is unless you count the one that someone once gave us that never worked that we stored in our backyard for several years ;)

I'm sure you can see how this went over!!






The Main Attraction...

I'd say pretty well...maybe cliche isn't so bad?? 

It definitely worked out for me..."Happy Fathers Day!!!!!...now cook us dinner" ;)  Don't worry, I cooked most of it, but saved the fun grilling part for him...and even invited the fathers in town to dinner...it was nice!
I guess the moral of the story is that if you put thought and heart into something...then it doesn't really matter what it is...the intention will be received...

Happy Sunday!!!

Thursday, March 29, 2012

Box of Sunshine...

Well, as some of you may know...I've been going through...STUFF...

I haven't been feeling very well for a while now.  Weird symptoms, like extreme leg swelling, even more extreme fatigue, shakiness, skin and hair problems, swallowing problems....and the list goes on...

It's pretty fun...

Well, my family doctor has been great.  He is the one that found Romy's brain bleed in a matter of days, and he instantly took me seriously as well....he tested my kidneys, liver, thyroid, and several other things...

Nothing came back unusual...

He said he has had a few patients with my same symptoms that had thyroid cancer, so he sent me off to get an ultrasound, and sure enough, I had 5 tumors. 

But they couldn't tell by an ultrasound whether they are cancerous or not, so they sent me in to do biopsies. 

I have to say, I haven't been freaked out by this at all.  I'm not welcoming bad news or anything, but I have just been going along, doing each procedure.  I told Brian I'd be fine, and that I would just go alone to the procedure.  One of my super closest friends wouldn't allow it. In fact, she may have thought I was a little crazy...

I don't blame her...

She INSISTED on coming with me...and this is after staying up until all hours to see the premier of Hunger Games, and then having to drive 30+ minutes on practically ZERO sleep...

She's basically my hero...

I still thought I was fine.  I'm glad she had enough sense to know I wouldn't be though.  Her poor hand probably throbbed with pain by the time they were done.  They went in seventeen times, and each time they would reposition the needle in the tumors TRYING to get something to biopsy.

It was a fail...

And on top of it...It was one of the most painful things ever.  Took me out for the rest of the day!!  She luckily drove me home, and even stayed a few hours to help with my kiddos while I literally cried in my bed...

It was rather pathetic on my part...

I think it all finally hit me, and I was a little scared. I still have to go into a radiation specialist...supposedly they specialize in tumors, and have better equipment.....sounds to me like MORE PAIN...



When she left, she had put a box on my counter, and asked me to open it later. 

It was a BOX OF SUNSHINE!!!!!

"You need some sunshine"

and she put in the box:

YELLOW PEANUT M&MS
YELLOW POPCORN FLAVORED JELLY BELLIES (my fav)
YELLOW BANANA SPLIT SUCKER
YELLOW STARBURSTS
SUPER CUTE YELLOW NECKLACE
LEMON HEADS
BUTTERSCOTCH CANDIES WITH SMILIES DRAWN ON THEM :)
YELLOW CANDY NECKLACE
JUICY FRUIT GUM (also yellow...of course!!)
YELLOW REECES EGGS
YELLOW FINGERNAIL POLISH!!!
LEMON PIE...YUMMMM
YELLOW PEEPS

THEN...under all of that, she wrote:

"After the rain comes the sun, but after the sun comes a rainbow"

And there was a whole bunch of my favorite colorful candies...SIXLETS

I BAWLED LIKE A BABY....

I felt so cared for, and thought of.  It was seriously the sweetest thing ever!!! How lucky I am to have all the friends I have...who care for me so much!!

Sometimes...all you need is just a box of sunshine...!!!

Sunday, March 18, 2012

School Schmool...

Am I the only one that DREADS school projects??  The kids come home announcing their next big assignment, and I feel like I'm back in high school or college procrastinating as much as I can... 

SIGH...

I'm just not a huge fan...lets just put it that way...

Here is one of the most recent "fun" projects.  The teacher even excitedly explained it to me.  It's one of her favorites each year.  Would it have been totally out of character for me to say,"please, just shoot me in the face" or something...?? DON'T PANIC.  I would never do either, and yes, it's a bit extreme, but it may have briefly grazed the thoughts of my brain...just briefly though...

WELL FOLKS, 12 hours later...YES 12....here is our final product.  She wanted this scaled to size as best as possible, and done creatively of course.  This thing is pretty big.  It was 12" X 24" or something of the sort... I present THE SOLAR SYSTEM

Carter Lords
4th Grade
Mrs. Oldemeyer

Good job Carter!!! ;)

Thursday, January 26, 2012

Out of Focus...

I don't know if you've noticed, but I've felt "Outta Whack" for a while.  Thankfully, I think things are coming around...but I was worried for a while that I wouldn't snap out of it...

I lost my blogging happy too...

I wanted to, and still thought about doing it all the time...but just couldn't bring the determination to the surface.  It just faded into nothingness...obviously...!!

Well, I miss it.  I miss talking about my day.  Recording my feelings...but mostly...I miss REMEMBERING!!!  I love looking back on my posts, and laughing, and crying, but mostly feeling!!

And there it is...I wasn't feeling...I was floating. So to speak...

Do you ever feel like that...that instead of swimming in life, you are just seeing where the current takes you??  Sometimes, I am sure it is a good thing...for a while it was...but then I realized that I had to swim...

I know...analogies..

I have a problem with it...

but you'll get over it...

Because this is my blog, and that's how I am!!!

Well, I am so glad that my life seems to be coming back into focus.  Things are clear.  I can see each leaf on the tree again, and not just the general object....and that feels good!! 

THE MORAL OF THE STORY:  Life will continue whether you know how you want it to go or not...you have to make the choice to sink or swim, cause floating gets you nowhere...

I choose to swim...

I need the workout anyways ;)

Wednesday, October 19, 2011

Cast away...

Sometimes I feel that I should be "cast out" of the blogging world. 

My daughter got her cast off today...!!!

She had it on for FOUR WEEKS.

I used to be good at this...

Frequent.

Blogging was my outlet, my journal, and my inspiration...

What has my life come to??!!!  AHHHH!!!

Well, here to make the best of my lameness, I thought I'd let you in on my little "fanCASTical" adventure...yes...I am totally witty...

Anyways, long story short, Romy had a stroke as a newborn.  Her right side nerve system is affected, making is hard for her to use it in a controlled manor...and sometimes at all. Our therapist of a year now suggested a treatment in which you cast her good arm to encourage....well, lets be honest...force her to use her "bad" arm.

IT HAS BEEN AMAZING!!!
Our journey to the cast was exactly that...or more an experiment.  We tried much less invasive attempts first.

Constraint Attempt #1: A molded half cast velcro-ed and ace wrapped. 

FAIL...it was so bulky, it was like a paddle, and she couldn't function, as a growing baby...

Constraint Attempt #2: Ace wrap.

FAIL...no matter how well we tried to wrap it...she would crawl out of it...

Constraint Attempt #3: Ace wrap with Coban over top.

FAIL...this worked great...only...the crawling caused serious blistering on her fingers, and lots of pain for the little sweetness.

Constraint Attempt #4: Cast of her lower arm.

FAIL...yep...you heard me...FAIL.  We tried doing a cast from just below her elbow through her hand.  She somehow wiggled out of it within 24 hours...

Constraint Attempt #5: Cast of her WHOLE ARM

SUCCESS...FINALLY!!!!

Before the cast, she couldn't pick up a fruitloop and get it to her mouth.  Before the cast, she could pick up certain objects if VERY PERSUADED to do so, and immediately her left hand would take it out.  She had a hard time extending her arm to reach for anything, because lets face it...why reach with Righty when the Left likes doing all the work??

WELLLLL...I am happy to report that the constraint therapy has done wonders.  She can now hold things intentionally, put food in her mouth, she can drop objects into a container at the right time, she can even stack a block on top of another block, which takes TONS of control.  She still struggles, and has difficulty turning her arm, and reaching all the way, but is not refusing to use the arm like she did before...

So pleased with the results...

She was so cute with her cast.  She crawled all funny, because her arm was bent at all times.  She sounded like she had a peg leg.  She also would bang on her crib in the morning to alert the family that she was ready to be up.  On a few occasions, she did realize that her cast was a total weapon...she may have injured few...but no permanent damage to report :)

The first thing she did once her cast was of was try smacking her arm on the wall.  She laughed when it didn't make a huge clunking sound.  I have to say that I am SUPER happy that I can put normal clothing on my daughter...and season appropriate!!!  It's getting cold, and the only thing I could put on was what was big enough to fit over the giant cast!!

NOW...if only she'd realize that her left arm still works...Here's to more therapy!!!!!

Wednesday, September 28, 2011

Hotel Party...!!

My sweet Oakley is a patient one...good thing too...look at her procrastinated mother...

SOOOO...I'd like to take you back to a time...oh say a few months ago...

My daughter turned 8, so I wanted to do something super fun and special...we decided on a hotel swim party...YES...with a sleepover...SQUEAL!!!

She was so excited, and didn't even mind that we waited until after school was out to hold it...her birthday is in May, and man, the end of the school year gets crazy...!!

I let her choose a few of her closer friends, and I also chose one of my closer friends to man the chaos with me...there was no way I was going it alone...not to mention she had twins that were gonna be there anyways...!  I like to tell myself she woulda helped out anyways...:)

The girls all enjoying the view from their balcony :)

Anyways, I got the conference room all set up for a little "surprise" dinner with cake and presents.  They were all so excited to be at a HOTEL...!!

SURPRISE!!!

Dinner, cake, and a lighter app later...we were well on our way to the swimming portion of the night...

This is the "Seriously??!!  You forgot candles and now you want me to blow on a phone that has a fake lighter and make a legit wish??" face

Please insert deafening swim party here...

IT WAS SO LOUD...

The girls seemed to have a blast, and I loved that once we got back up to our room, they all snuggled in together and munched their candy, giggled, watched a little TV, and eventually drifted off...

Alli and I on the other hand...we stayed up talking for a little while...I totally couldn't sleep cause I didn't bring my pillow, and there was only one...I am a total pillow hog...I need my pillows people...preferably three, but come on...at least two...

It was around 2am, and I hadn't fallen asleep yet, and I hear Alli tossing around...she was awake too...so we chatted until 4am...

Next thing I know Alli is telling me that she is going to go ahead and take the girls down to breakfast.  I thought she was totally crazy...for heavens sake...it could only be like 6am...

NOPE...she proceeds to tell me that it's 8:30am...what a bum...here I am the host of the party, and I am dead to the world, and hadn't even heard the girls get up...OOPS...

We took the girls to breakfast, and again to the pool, had a nail painting party (of course) and finally, we made our way back home. 

I have to say that it was a really cute little adventure.  I will have to do it again.  She had a blast, and come on...who doesn't like to stay at a hotel??

Saturday, September 3, 2011

Ready or Not...

I'll tell ya...I was definitely not ready for this last week...

SCHOOL...ALREADY??!!!

BUT....BUT...

SIGH...

Well, ready or not, it comes anyway.  I just really felt like I needed just ONE more month of summer.  We really were jipped this year with all the surgeries.  I guess there's always next time right, and hey...my kids can breathe...

Well, most of them can...

School Started Tuesday.  I definitely thought school starting would mean getting in a better routine.  Getting organized...you know, all that good stuff...


I was wrong...at least for now.

I got the older two off to school.  I had an appt that morning to get my hair fixed...cause I messed it up...cause I think I can do these things Nemo, but you just cant....

Mostly cause I couldn't see the back of my head...and bleach plus no vision equals not the best scenario

Anyways, I have a head full of foils, a daughter who has to go to therapy, and my Parker boy starts Kindergarten this year...OH, and my sister was over with her little man getting ready for work too... ;)

Luckily Brian got there in the nic of time to get kids to where they needed to be.  I was running all over the house (with my foils) getting Parker ready, Romy ready, and getting them out the door.  I was sad that I missed Parker's first day.  There are only so many firsts...but Brian was super cute and took some pictures



I had to go to school early to pick the kids up because Oakley had another dr appt...she still cant breath through her nose...that's generally a problem I guess.  :)  So after an hour and a half with five kids at the doctors office, we headed out with steroid treatments, and we were off to my dads to wish him a QUICK Happy Birthday.  It's about 5:30, and I had a preschool meeting at 7.  So I hit my kids through the 1/2 price Happy Meal line at McDs, and head to my dad's in Eagle.  I couldn't even give him his birthday present because it was stuck on our old hard drive from our computer crashing...so I showed up empty handed...

We came. We ate. We left.

BUT...hey, at least we sang him the Birthday song...sigh...

On to the next adventure.  I drop the kids off at home with the sitter, and took Blazer to the meeting.  I am glad that we found a preschool for him...he will need it with the kids being gone so much!!  When we were done, we had to find Carter a backpack.  I had been to four stores already, and didn't have much luck.  Another 3 stores later, and we FINALLY found something that wasn't super spendy, or super dorky...

I finally got home about 10pm to a house full of kids that hadn't gotten to bed yet...on a school night...

JOY

I put them to bed...and finally sat down...at around 11pm...

So that was our FIRST day of school....who's up for round two??!!!