Readmitted

We've been readmitted.  The penthouse floor, V.I.P. status.  Bittersweet.  So nice to see many people we know and missed, but sad to have to be here again.  The Bean weighed-in less today, 12 lbs., 10 ounces.  So, she lost a few oz's in the past two weeks.  We been seen by a dozen people already. I've given the monologue several times, some more colorful than others, answered a gazillion questions, and reacquainted with the KP Attending Pediatrician whom we spent a week with last September.  She's been poked for blood, catheterized for a clean urine sample (better than bagging, less contamination possible), x-rayed, her g-tube pouched (to collect the leakage for measurement), checked by our favorite cardiologist, nutrition, visited by many Dr's, students, and our nurse friends.  All are amazed at how good she looks, how active she is, how advanced her cognitive skills have become. Other than her leaky g-tube and her need to put on weight... we wouldn't be here...so... they're on the case. 

Andi and I are in our pj's and winding down a long day.  Her with froggie, and me with some Adele, because they haven't yet implemented the adult beverage cart I suggested long ago.  I swear they could fund a new building if they did offer it up to us overwhelmed and frazzled parents. Can you even imagine a happy hour mixer in the family lounge from 5-7?!  THAT ... would be AWESOME!  I'll bring the disco ball, some Earth, Wind & Fire, and let's paint this place a new shade for a few hours!!?! I know there are parents here going through ten levels of hell.  We've been there, and it would be nice to be there to support others going through tough times.  I've downloaded and will bring Oprah's Moscow Mule recipe!  Now, there's a conversation starter!
Being away from home is going to be weird, so I emailed myself a most-precious picture I shot on my phone the other day:

If you look closely, you will see that Andi is actually holding Maddux's paw.  She loves him, and although he's really sweet with her - I'm sure he will enjoy a few quiet days without her wrecking his nerves.  At the time this photo was shot, she was in the midst of getting an olive oil treatment for her dry / cradle cap. The weather here sucks, but, it's not THAT cold.

Tomorrow will be interesting.  More tests. More visits. More question after question.  Hopefully all will help get us some answers, and a new game plan!

Inspired And Thankful!

When I can, I have been trying to catch-up on the blogs of other Mom's with kiddos with CHARGE.  It's been very inspiring to read their experiences, struggles, but more importantly, witness their strength and resolve.  I think the thing I find most comforting and encouraging, is seeing someone just like me going through similar trials and tribulations.  I think it makes me feel less isolated and alone, as here are people that can totally relate to all of it, and thensome. It's an honor to read their blogs.  I am thankful for the glimpse into their lives, and appreciate it more than they know.  Ladies, you inspire me.

Andi's getting weighed again tomorrow morning.  So, we'll see what the game plan is...
I did remind our Dr. of our vacation departure plans.  I warned that I didn't want to get arrested breaking the Bean out of the hospital so we could catch a flight.  I've had visions of paging him and asking him to bail me out of jail -- him staring down at the phone in disbelief of what I ask...  Yes, I have weird thoughts sometimes...   ...so what?!    So, anyway, he's aware of our plans and promised that if we go back to Doernbecher's... it will not interfere with our trip!  It was 87 degrees in Alabama yesterday, uhm yeah... there will be NO disruption of our vacation!

Lastly, just wanted to shout out a big ol' THANKS! for the various comments left by all.  They all mean a lot to us, and we appreciate it. I've tried to leave a few on other blogs, and they don't make it very easy.  Pick a profile... yeah, whatevah!  Anyhow, thanks for the support.  **Andi blows a raspberry!**

Lunch With the Girls

Today, the Bean donned her funky Friday outfit for lunch with the girls.  Her onesie says, 'There's A New Girl In Town' and today was the first day wearing it (as it's chronically cold here until July 5th.)  It was a gift and whomever sent it, thank you and we're sorry you haven't received a proper thank you card.  Our manners are lacking lately.  We threw on this super cute pink knit sweater, her hearing aid and cap ... and off we went! 

Sore Teeth ... mine

While Andi delighted in the company of Grandma, I got to endure the sadistic tendencies of the dental hygenist.  What kind of job is that to aspire to? Does a high school junior dabble with the thoughts, "I like to scrape the gunk off of peoples teeth, and get their gums bleeding really bad."  I just don't see how that can be a popular career choice with the guidence counselor in high schools today. Luckily for me, this lady was rather nice and I educated her a bit on CHARGE Syndrome, as I missed my previous six month appointment because the bean was in the hospital.  Another person informed of CHARGE, only about a billion more to inform.  I still don't have my 'what is it?' monolog perfected, and find I stumble explaining what it is...something to work on in my copious free time.

I was looking forward to washing down my 'oh my teeth hurt' glass of wine with some delish spaghetti and meatballs, all while watching people sweat it out and cry about it on The Biggest Loser.  To my horror, I looked at the cable guide to find that they've preempted the show with the Blazer game.  Now, I'm a big Blazer fan, but ding-dang... I was itching to watch people work hard, while I sat here on my fat couch and savored the sweet smell of garlic. Why do they punish me?!

So, with my clean, sore teeth...Andi sits in her swing with her best friend Froggie, pretty content for now.  I hope tomorrow is a little easier to digest, and more productive toward Andi's therapy homework, i.e. 'tummy time', sitting up, and maybe even learn some more sign language.  I've recently learned a few words having the disc playing for Andi.  She didn't even glance at the TV, whereas I perked up to learn a few signs that I can use... 'Mommy!'  'Daddy!'  'Grandma!', etc.  I'm trying to use them wherever we can.  Would help to get her hearing aid in and get to stay in for longer periods of time.  She's just so stubbornly hell-bent on yanking the dang thing out.  Kinda reminds me of ... me.

Anticipation

We are scheduled for an official Neocate weigh-in on Monday morning.  Giving us almost two full weeks on this formula.  I am tempted to remind them of our vacation departure plans, so as there is no confusion as to our timeline of availability.  It's been a year & and a half since we've been anywhere outside the immediate area, and even longer than that for me to go somewhere when not pregnant.  So, there will not be any disruption to our plans.

I fed Andi some sweet potato & white bean prior to her g-tube feed at noon.  Upon finishing her g-tube feed of Neocate, I realized how wet her outfit was -- soaked. So, when I went to change her into outfit #3 or 4 today, I found it also coated with sweet potato gunk.  'uhm, tasty!'  I filmed it and might post it later, in an attempt to help all our viewers stay on track with their diet of course!  Because, I'm just so thoughtful like that!  So, her stomach isn't emptying, or it's oozing out from around the g-tube.  Why?  In reading a blog of another kid with CHARGE Syndrome, they had a gastric emptying test.  I googled that and wonder why we haven't had that one yet.  We haven't had any sort of digestion tests, at all.  My kid is 9.5 months old and doesn't even weigh 13 lbs., obviously, there's a problem.  The GI specialists at the hospital told our Dr. that we needed to see the feeding specialists there first.  Wow, that sounds like a colossal waste of my time.  Feeding isn't really the issue at this point, it seems more a problem of processing and absorption.  Hello?!  Am I the only one that gets that?!  I'm about ready to traipse our asses (excuse my french) up to the different specialists at the hospital and plop her on their laps and ask, "'WTF?!'  9.5 months, not quite 13 pounds... HELLO!?!  Bueller?  Bueller?  Bueller?!"  Something better happen quickly. Although this Mom is nonconfrontational, there's a storm brewing within and I might just implode.  In the meantime, I can't help hum the good ol' Carly Simon song they used as a jingle in the 80's for the Heinz Ketchup commercial, [sing along]  "Ant-tice-ci-pate-shun!  Ant-tince-ci-pate-ate-ate-shun, is making me WAIT!  Keepin' me WAY-ATE-ATEING!"

The Finer Things In Life

So, in an attempt to get ready for taxes, I got a wild hair and made a spreadsheet of Andi's medical expenses from the piles of paperwork I once organized.  It has colums for co-pay's, prescriptions, medical equipment and notes.  I know I'm missing $1000. of the $3000. co-pay cap for last year's hospitalization, and it does not include anything we've had to pay for me, ($1200. hospitalization, and all the pregnancy appointments - every 3 weeks, and thensome.) 

Wowsa, them some great Delta miles we've accrued.  However, looking at this, I can't complain -- at all.  It could be SO much worse.  We could have been financially ruined with all the expenses.  We are so grateful, so incredibly grateful. I did see that Doernbecher's does take AmEx, as I stumbled onto that invoice.  I also saw a couple of billing statements showing me exactly how much her first few months of life cost... wowza.  I have a $10,000. dog and a multi-million dollar baby...amazing.

Since being on Neocate, Andi has not really spit up at all. She ate some bananas and some banana/peach granola this morning too.  No problems so far. I've also noticed that her super dry skin has seemingly become better.  Coincidence?  Hmmm...  or is Alimentum just sucky-sucky?

Today, Andi got to experience some of the finer things in life, DMV and DEQ.  DEQ bored her, she slept.  But DMV had a lot of faces at which to stare, she even started chatting with the man who took the photo.  It was a rather exciting day in Andi-land.

After her feed settles a bit longer, we're going to play in the standing activity circle o' fun.  Not only is it fun to get a different perspective, and the toys are more interesting, but it's good for the cold in her lungs to get off her back.  She's definitely itching to go, as she's doing a Riverdance number and chatting it up on her pillow.  I think the kid has some energy to burn. 

Diet Change & Delta Miles

Andi did not put any weight on this past week, and actually measured shorter than the previous week!  ACK!  She SHRUNK!  hahahahaha... she's only 25.25"
We've changed her formula back to the Neocate.  Neocate is formula that is broken down into just amino acids, so it's the easiest to digest.  It's like jello for babies.  We started the new formula last night, and we haven't done any oral feeds, and so far, she hasn't spit up at all.  We also increased her Prilosec dosage, to help relieve her reflux.

We're going back next week to reweigh, and see where we are at that point.  Our Dr. is trying to coordinate it so that if we do go back into the hospital, everyone is on-board and aware of it, so they can get in, do their tests/evaluations, and get us out as quickly as possible.  Luckily for us, they are considering the co-pay expense that we'll have to endure.  It's pretty sad when you easily dismiss the threat of bills will a shrug and the ultimate commerical for overspending, 'it's just credit!'  But hey, if they take the American Express card, we'll accrue some serious Delta miles and fly out of rainy town USA to somewhere sunny and glorious.  Sadly, I don't think Doernbecher's accepted the good ol' AmEx, and that is a problem!