I put a lot of effort into this each year.  Thinking about what we’ll all wear, then going out to shop for it.  This year we set our tree up the day after Thanksgiving because my dad was in town, so I thought we’d take advantage of him and make him take some pictures of us with hope one would work for this years Christmas card.

Here’s what we ended up with :

It seems I have no sense of “timing” .  Emma was over it before I even got her hair brushed , Andrew was pissed at his argyle sweater and Josh was annoyed at the kids for being annoyed with the process.  Me ~ well, I’m a mom. So I had no trouble ignoring them all !  Yep, that’s a smile that says Merry &  Bright.

Because my own mom was cursed with a syndrome I like to call ” The Little Miss Sunshine Disease”,  she failed to see the humor in this photo.  “The kids aren’t smiling”.  Which in her mind = happiness.  And because I still fall for her MIND TRAPS, I took them to the  mall and they took this :

I was a little sad that one of them wasn’t freaked out and crying !  I LOVE those pictures.  But this is cute too !!

And because I’m taking the time to actually write in my blog, here’s a pic of the kids from last year …  look how tiny Andrew was:

Amazing the difference a year can make

Merry Christmas !

Andrew !  Your 1 today …  it’s so crazy because on one hand it doesn’t seem possible that you could only be turning 1, last year was filled with a lifetime’s worth of heartache and fear, and on the other I’m like “Wow. How is it possible my baby is turning 1″ ?!?

I was SO excited when I found out I was pregnant with you!  And that you were a boy … ah, even better ! One of each , our little family complete.  Of course those feelings of excitement quickly turned to panic as we learned you were in distress.  I never once. Imagined. That it was going to require 2 fetal surgeries  just to get you here. That you’d spend your first 4 weeks in the NICUor that you’d ultimately end up on dialysis in order to survive.

And yet here you are … completely unfazed  by the dialysis tube  hanging out of your body. Crawling, cruising, bugging your sister, reeking havoc on our house and I couldn’t be happier!

I am SO GRATEFUL for your precious life.  I couldn’t begin to tell you how much I love you, or how lost I’d be without you. Your courage, strength and determination inspire me daily.  I couldn’t be more proud!

HAPPY BIRTHDAY !!

Andrew has an artificial opening in his stomach where his Dialysis tube exits his body :

 We go out of our way to keep it protected, we have to.  Our nurses call it his “life line”, which sounds so dramatic, but essentially it’s what it is. So as you can imagine we have “RULES”  to follow as far as keeping it clean and sterile.  Like, we change the dressing everyday. First we clean the area using betadine swab sticks, apply some gentamicin cream, two 2×2 gauze pads and then cover it all with tegaderm.  He wears an elastic mesh belt thing around his waist to keep his “tube” close to his body so that it doesn’t get tugged or dirty and he’s NOT allowed to be submerged in water.  Like he can’t take a bath ( he showers !) or go in a pool, lake or ocean.

We had a freakishly HOT weekend. Like 96 degrees and we don’t have air conditioning  … most homes in our area don’t because we live near the coast. It’s not suppose to be that HOT.  So we were forced really to bust out the slip n slide.  And Andrew LOVED it !

I totally justified this.  He was in moving water, his tube was covered and it was only for like 10 minutes at most.  And I obviously changed his bandage the minute he was done.  He had the BEST time ! He was laughing and smiling and splashing …   for those short 10 minutes he wasn’t a baby with kidney disease on dialysis.  He was just a boy enjoying his day

And for THAT, I’d break the “rules” again!

Sooo, when I started this here blog, I had nothing but time.  I was in the middle of my VERY HIGH  RISK pregnancy and after my first fetal surgery , I was ordered to bed rest.  I had moved out of my own house and in with my dad to be closer to the hospital and my doctors ,  which meant no husband or daughter or any sort of responsibility or distraction.  I was able to lay in bed and blog about my weekly doctor visits and anything else that popped into my head.

Since having my Miracle child,  life has been busy to say the least.  And so my blog suffers …   Believe me it isn’t for a lack of things to write about, I just can’t find the time to do it.  And when I do sit down to write, a million other things have happened and I can’t decide which I should share, so as I sit and ponder my eyes roam around the room and I notice things like :

*water rings on my glass table top that need to be cleaned NOW

*Dust on the media table thingy, that I’ll dust while I’m up

*Toys, toys  EVERYWHERE toys ! I’ll just pick them up really quick

And before long, my blog is the last thing on my mind.  It’s a disease, I know … but I can’t help it.  I cannot function when things are unorganized and out of place.   I can’t sleep if there are dishes in the sink , I can’t blog if the house is a mess.

We drove to Santa Barbara recently to take Andrew to his routine cardiology appointment and while we were there decided to take the kids to the Natural History Museum to see the Butterflies Alive exhibit ! A day of multi-tasking really !

I myself am a butterfly FANATIC !  I love everything about them … so much that Josh and I released them at our wedding !  40 live monarchs … it was magical !

Emma loves them too !   After a million times of asking if she could take her own pictures, we finally gave in. I think we may actually have a little photographer on our hands !  I know I’m probably a bit biased, but I think the girl has some mad skillz !

It’s recently dawned on me that I rarely mention my first born.  I’m not sure why really … she’s actually pretty hilarious when she’s not in time out. 

 One of these days I’ll make a ” kids say the darnedest things” bullet list of all the CRAZY crap that’s come out of her mouth !

Hard to imagine that it was only a few months ago I was wondering if I’d even be bringing a baby home … all the worry and heart ache. Feels like a life time ago …   

ME !!!!!

I must admit, I was having my doubts … but after enough calling and complaining and finding the right contact ( THANK YOU Jescha McIntosh  ~ I LOVE YOU )  my bill has been PAID !!!!!!!!!!!!!!     

This mama, is doin a dam HAPPY dance across the kitchen floor  …

And BTW … I feel like I should mention how awesome I think the Air Force is.  They’ve been really good to us. My biggest complaint is about the random claims representative you get on the phone …  I mean surely we aren’t the first family in the history of the Air Force to have a special needs child, MUST we recreate the freak’n wheel EVERYTIME I call ?!?!?

 sheesh.

Dude.  I’m headed for the white house. I can feel it … this is going to be a loooong drawn out process which will result in me heading to D.C., dialysis machine in hand to give a speech to congress on why they need to take peritoneal dialysis training off the Government No Pay List.

Friday I called our insurance again, trying to get some answers, but of course I ran into another dead end.  I have gotten a different answer to the same question at least 6 times now.  So I called the claim representative i was talking to a liar.  This apparently offended her … opps !  She told me that because Andrews dialysis training is on the NO PAY LIST that we can’t appeal it. That the only option we have is to pay the bill, and that she’s sorry to be the bearer of bad news but that’s simply how our insurance works.  Then she informed me that the reason Peritoneal Dialysis Training is on the NO PAY LIST is because it’s considered an “educational class” and then proceeded to compare our son being on dialysis to diabetes.  What a Douche Bag.       Then she suggested that I google the Government No Pay List and take it to our finance person at the hospital  ????   Yeah, that’s what I’m gonna do.  “Excuse me, but can you please not bill us with any of these codes, our insurance is acting like a bunch of assholes and won’t cover our care if you do”.

So after being reduced to tears, I got pissed.  And woke up Saturday morning ready to fight !  Oh, hells yeah. IT IS ON !   First I googled the “white House”  because I wanted to write President Obama a nice little letter about our situation, so I was looking for his mailing address and to my surprise there was an area called “contact us” or something like that where you can e-mail him !  I’m not retarded, I’m sure he has more pressing matters than to check the millions of e-mail he probably receives daily, but somebody reads them, and I figured if it sounded urgent enough that maybe I’ll actually get a response ! I even included my home number in case he has time to call me ! 

And today I’ve already sent an e-mail to one of our state senators Barbara Boxer, and printed a privacy release form from Dianne Feinstein’s web page to which I’ll add a letter requesting her help in this matter !  I’ve figured out who I need to talk to, his name is  Daniel Chen.  He is the  Constituent Services Representative for issues of the Military including TRICARE, which happens to be our insurance.   Yo, Daniel Chen if you happen to google your name and come across this , gimme a call ~ or shoot me an e-mail, PLEASE !

I figure a lot of laws, policy’s, and policy changes have happened because someone pissed off the wrong mom.  I’d like to add myself to that list !  So I’m going to use what little free time I have to fight the fight ! Even if my family has to be the example and we get stuck having to pay these ridiculous bills … it’ll all be worth it to me if I can make a difference and spare the next family unfortunate enough to have their child diagnosed with kidney disease , one BIG FAT HEADACHE !

To whom it concerns :

My Husband and I recently had our second child, Andrew, who was born with End Stage Renal Disease. In order to sustain life he must have daily therapy … Peritoneal Dialysis to be exact. 

 We recently received a bill for $2669.00 specifically for the MANDATORY STATE REQUIRED 2 weeks of Peritoneal Dialysis training we had NO CHOICE but to have so that we could learn how to take care of our son and perform dialysis at home.  After speaking to a tricare representative it’s been brought to my attention that it’s our responsibility to pay because the “MANDATORY STATE REQUIRED DIALYSIS TRAINING” is on the GOVERMENT NO PAY LIST.  WTF ?

Let’s be clear. You approved for and paid for him to have his Peritoneal Dialysis tube surgically placed. You covered dialysis while he was an “in-house” patient at Children’s Hospital Los Angeles. You’ve approved and are paying for us to do dialysis at home, as well as covering all of the necessary supplies and medications to be delivered directly to our home. BUT, you won’t cover the “MANDATORY STATE REQUIRED DIALYSIS TRAINING” ?!?!?

This Makes NO sense. Believe me, you’ll be receiving a personal letter appealing said bill, as will our state congressmen and women. I’m going to make it my personal mission to have this changed, if not for my family then for the next family whose unfortunate enough to experience any of this.

 Oh, and if you haven’t noticed my self tittled blog “Type A Momma” …  I’ll find the time to be a pain your ass.