Halloween 2010

The Bean tuckered out early, but she was dressed for the greedy lil' kids itching for their candy fix.

This is not a political statement my Alabama (Auburn) friends... it's just a sweatshirt.  ;0)

dragging

Getting up at 4 and spending a few hours in the early a.m. trying to sleep on the couch in between Bean pacie withdrawal (i.e., it falls out of her mouth and makes her whine)... is starting to really zombify me, just in time for Halloween.  Least the timing is right.  This past night we got up every hour for some crying and irritability.  I think I tried to bribe and reason with the Bean, it did not work.  Now that it's nearing working hours, she's settled down and chillin' on her bed. Go figure!

I'm too tired to think, so here are some photos.

Parenting 101

I've been getting feedback from different healthcare professionals & social workers about how impressed they are with me as a parent.  I can't help think that they must see some pretty crappy parents on their home visits.  I mentioned something about that to the most recent complimenter... and she agreed and elaborated on some of the poor parental conditions she's encountered.  So, although that should boost the ego, it doesn't really.  There are things I wish I had more time to work on with our Bean: bottling, sitting upright, tummy time, story-time.  There never seems to be enough hours in the day, even though our day starts at 4:30.
I met with the nurse today whom we might have come help us out, but she just took a job and is only available on Monday's and every other weekend.  I also spoke with the KP social worker and learned that because Andi isn't home-bound, we don't qualify for an in-home health nurse.  Another dead end.  Frustrating.  However, since the Bean has been coming off med's, we're considering lessening our medical requirements.  Pretty soon, we might have to start tapping the street people who sashay down the middle of the street with their shopping cart, swilling a beer.  I think the Bean could be a great influence on them, and hey, least it won't cost us the equivilent of a mortgage payment for them to help us out.  HHAHAA.. didn't I state in the previous paragraph, how I've received a few compliments about my parenting skills?!?  'y-e-a-h, whatevah!'

Tomorrow we have Early Intervention coming to meet us and assess services & therapies Andi will need to enroll in.  Between them and the conference call with the nutritionist, I hope to get some ideas on how we can make the bleachy-chemical-stench formula appeal moreso to the Bean, as she is no longer taking the bottle.  Feeding, balance & hearing... those are obstacles we know we still face. 

I called to have the provider come pick up all the O2 tanks today, including the atomic bomb.  They said they haven't received anything from the Dr., officially stating that they've removed the therapy.  Otherwise, they'd want me to sign a release.  The sarcastic beast inside of me was itching to get out...but, I shot our best Dr. an email and he's already confirmed he'd take care of it.  Yippie!  I've decided I'd better document the supply before it goes buh-bye!  ;0)

The Bean helped me shoot this picture (one-handed).

quick status update

pooped.

Party Tricks & Andi Bean Treats

We're teaching Andi Bean some new tricks 'round here.

snores, chores and big-time bores

Sleepy Bean -- Post Bath-Time

It was too dark in the room, so the shutter speed was insanely slow. 

I kinda like the look though.

The line down her chest is her heart surgery scar.  The two scars above her right arm are where drainage tubes came out.  The marks on the front of her right shoulder is where the central line was in.

All her battle wounds look amazing!

We received a few callbacks today.  There's a state agency that called me back, the 'Inclusive Child Care Program'.  It's a program for people who require a higher level of childcare, and if you qualify, they assist you with a portion of the cost.  Even if I lost my job, we still wouldn't qualify for assistance to help us pay for anything. I've renamed it, the 'Exclusive Child Care Program', as according to them, we're living in the lap of luxury. *insert sarcastic laughter here.*  I totally understand it, but another part of me is annoyed that none of the services in place, thus far, seem to be open and available to help us - because we make more money than deemed allowable. I'm thankful to be on this side of the fence, so I refuse to complain.  However, it's worth putting it out there, so people consider all levels of parenting we're experiencing.  Luckily, we have a great insurance program through my job.  Otherwise, we'd be financially ruined.  The cap on hospitalization stay alone was something that saved our finances.  Can you even imagine?  But don't get me wrong, we're still knee deep in expenses, between my c-section hospital stay and Andi's cap, we're out $3,200.  On top of that, there are all the labs, co-pays, med's, hearing aids, and now, the cost of getting someone here to help us.  If I were to go back to work in the office just two days a week, that would run us about $400. a week. So, although we don't qualify for any financial assistance to help us out, which -- again, I understand and am actually not complaining... I think it's important to point out the financial impact, and exclusivity of services out there to help people, some people.

In any case, another place called me back and they too weren't able to help us.  What they did was something that didn't work for us, and honestly, I don't even remember what exactly... it's been a long day that started at 4 a.m. with a good ol' upchuck on my bed as I laid the Bean down with me - to try to stretch our sleeping schedule out a little bit longer.  By 4:10 we were upstairs getting clean, and my underexercised butt knocked a glass off the coffee table and into a lot of lovely pieces onto the rug.  Yippie, getting out the vacumme cleaner at 4 a.m. is always a treat!  After cleaning that up, I made some coffee while Andi entertained herself by staring at herself in the mirror... as she does every morning, and a good portion of that pot of coffee ended up spilled all over the kitchen counter.  It just was one of THOSE mornings!!! 

The audiology dept. at Doernbecher's called to schedule our appt. to get Andi her hearing aid fitting. 

-->  November 30th.  <--

Yes, November 30th.  That's HOW MANY weeks away?  I vocalized my disapproval, but they're booked up solid.  I put us on the cancelation list, and given our first two hearing tests happened rather quickly - due to cancelations, I'm hopeful we can get her in there lickity split.  I hope so as I'm honestly running out of patience.  Sorry, but when the ENT Dr. told me more than two months ago, 'the sooner we get her hearing, the sooner her brain can start processing sounds.'  I know everything will be fine, but I can't help being impatient to want everything to happen NOW, especially after all she's already been through.  Naturally, you want the best for your kids, and when you have a Bean... you're going to fight to give her everything and thensome, delivered on a silver platter.

So, it was a long, long, l-o-n-g, l-o-o-o-o-o-n-n-g day... the Bean snores and the dishwasher hums.  Andi is going to light up and smile big when she sees Daddy come home. She's very smitten with him, just like most girls are smitten with their Daddy's.  At least we have clean sheets onto which I will likely drool with exhaustion.

Temper Tantrums and Sleep Deprivation

I wonder what it's going to take to get some of the lame-o's to call me back.  Incessant calling like an overexcited teenager calling the cute boy of the week in the days before caller ID!?  I mean, it's ridiculous.  I shouldn't have to call you more than once and I shouldn't have to wait.  **stomping on ground like a two year old having a major tantrum!**  Some progress is made, yet more is still out of reach.  Sunday, we have a lady coming to the house to meet Andi and if all goes well, will likely be helping me out for a few hours a week.  I have no idea how long the home health nurse referral is going to take and how much that is going to cost me, so I figure I should have a few qualified people on board to help us out regardless of things in the works.

Getting used to the Bean not being tethered to the O2 tank is taking some time to get used to.  It's bizarre.  For so many months now, I have had to give thought to every time I've picked Andi up.  "where's the g-tube?", "is it plugged in?", "grab the tank" or "turn off the tank and disconnect, so we can plug her in downstairs".  I mean, there's always been something to consider. So, here she is no longer tied to the tank, and in the past few days she's wanted to be held a lot and at times, will not accept being put down -- that only made her more angry.  I had to give it actual thought as I was trying to fix dinner and deal with a meltdown at the same time... 'oh, yeah, I can actually take her into the kitchen with me now!'  It's been quite the joyous revelation.  Now if I could spend the time to figure out the Moby we bought so I can carry her around in that in the house.  The other carrier is great, but she 'cooks' in it, due to the newborn carrier inside the carrier... she gets really warm very quickly.  I consulted the manual and she needs that carrier until she can hold her own head.

I've been trying to reintroduce the bottle to our Bean.  When she had her cold, I did not allow the bottle as it'd promote mucous. Well, since that cold, we've also changed her off the Neocate (amino acids) to all Alimentum (partial milk protein).  The new formula smells like bleach and chemicals.  I can't stand the smell of it!  Yes, I have a "bionic nose" but I can't imagine that nasty smelling junk tastes very good.  So far, the Bean hasn't shown any interest in the bottle, which is a major step backward.  I will keep trying, but today found her asleep most of the times I'd bottle feed her, like now.  The Bean has had a very restful day.  She's snoring and chilling out on her lil' bed on the couch.  I however, haven't had any shut-eye and hope that our schedules do not conflict tonight, otherwise, that could be nasty.  Daddy is on a work trip -- and left earlier than early this morning, so I'm flying solo... and Maddux doesn't seem very interested in babysitting, so, hopefully, she'll sleep for me tonight.  Puh-lease, Puh-lease, Puh-lease lil' Bean... help yo' overtired Momma out!  **fingers crossed**