Flat Charlie & The 4th Annual Charge It For Charge Fundraiser!

We are participating in a Flat Charlie project with other CHARGE families.  I'd never really heard of this before, so if you're like me, Flat Charlie is a beloved paper boy that travels from family to family.  He is given a new article for his 'outfit' and gets his picture taken in various places around town.  Later this year, Charlie will be visiting us in the "Rose City", at which point, we will play tour guide to him and show him the sights, sounds and smells of Portland.  We're debating our "addition" to Charlie's ensemble.  Anyone familiar with the show Portlandia, knows we want to "put a bird on it!" But, not everyone will get that.  Then there's the itch to give him a bike, a six-bin recycling system, or simply a rose with solar panels that will provide power for the next 60 homes he visits.  Yes, the noggin' is brewing with the options and plethora of opportunities that we will embrace with our hippiesque gusto. Well, seriously, Portland isn't just that - it's the home of Nike, Addias, Intel, the largest bookstore west of the Mississippi river, the microbrew capital of the U.S..  So, we'll likely doll Charlie up in a variety of sportswear, get him drunk, buy him some books and get him a tattoo that will one day be completely inappropriate.

That being said, this Flat Charlie Project is really a fundraiser for the CHARGE Foundation.  Guaranteed that most of the people that read Andi Bean, had NEVER heard of CHARGE Syndrome before meeting the Beano.  I know I'd never heard of it prior to Andi.  Everyone has heard of Autism, or Down's Syndrome, even Trisomy has garnered more press... that all boils down to $MONEY$, in my mind.  The more money a syndrome has, the more money they can use to educate the masses. Until I write my book and gain the attention of the big daytime shows, I can use my voice here and ask you to break out your wallets and donate to our Flat Charlie Project - as it all wraps around and embraces CHARGE Syndrome, awareness, education, and most of all, the love, laughter and smiles of the little girl you read about here -- Andi Bean.  She's been through seven layers of hell, and yet, she smiles bigger than most.  She refuses the word, "no!" and she keeps fighting every single day to do the things that most of us never think twice about, like standing up without fighting balance issues.  So, with that being said, please consider breaking open your checkbooks and giving under 'Anna Miller' to support the Flat Charlie Project. Even if you give $5., every dollar will help!  We would appreciate it.  And trust me, I know for most, even $5. hurts... so, give if you can... and if you can't let's go out and donate some blood in honor of the Bean and some blood she received during heart surgery.  There are ways to contribute, even if it's not financially.

There's a big walk for the March Of Dimes -- "for Healthy Babies", coming up here in town at the end of next month. While I'm debating walking in that, I can't help cringe at the idea that Andi is already here, been through hell, and yet no one knew the birth defects that she would be saddled with due to CHARGE Syndrome.  March of Dimes is a well-known name.  They were in the NICU to offer support when I was so not ready to deal with them.  They haven't been a service to us, but yet, they probably bring in big bucks because they are known for doing good helping more healthy babies be born.  Well, without getting too angry or political, I can only say, they have the money -- and the CHARGE Foundation does not... so maybe it's time to start funding those smaller, less known syndromes that aren't being adequately addressed. So, again, please consider contributing to our Flat Charlie Project.  Here's the link:

FLAT CHARLIE PROJECT DONATIONS

and again, if it's simply not in your budget -- like mine... then go visit your local Red Cross and give a pint.  Although - I must admit that when I hear 'pint!' I revert back to my beer-drinking days!  So, maybe we'll take Charlie down the street to Widmer Brewery, or Portland Brewing, or maybe we'll take him to donate a pint...as the paper fibers used to make him probably had some sort of beginning in Oregon... he will be embraced and welcomed here.  It will be fun. 

Thank you!

Social Skills

While my current project downloads, which is projected to only take another 5 1/2 hours, I figured I could afford to steal a minute for the blog while the Bean snores in the other room.  Being I don't get out much socially anymore, I've noticed that when I interact with others, I'm rather rusty.  It feels like I do the usual Andi progress update "dump" (as in, 'this is what has happened since I saw you last, ...sorry if it seems a little heavy!') which is what I know from interacting with the various Dr's and specialists we work with.  I try to keep everyone up to date on all things Bean, because even if it isn't their specialty area, they should still know what is going on.  It's a running update that takes several minutes.  With people I don't know well, or don't know Bean's history... I do a massive dump of heavy information in their laps.  Most blink their eyes and shake their head in disbelief.  Some ask questions.  Some run in the opposite direction after a simple exit strategy.  Okay, so, I'm being a bit dramatic and coloring it a darker shade than it is.  My point is, I feel like I've lost the ability to simply chat about anything and everything.  I'm rusty.  My conversation skills are stale.  My ability to gab is rough.  And more often than not I walk away and wonder, 'why did I tell them that?'  I guess I do have to be thankful that I never took up 'baby talk' and don't mindlessly talk to other adults using baby talk.  Now THAT would be annoying. I'm sure a lot of new parents feel like they're losing their social mojo.  I know I have, and I'm not a new, nor typical parent. 

Today, we took Maddux to see the vet for his comprehensive exam, after which, Andi got her hair trimmed at the kiddy salon nearby.  We are going to grow the hair, but it desperately needed a clean-up.  Em, Andi would NEVER tolerate clips in her hair.  She would yank them out and throw them on the floor in disgust.  Yep, she's my baby girl - and thus, not very girly. Actually, I don't know if that's true yet or not.  But, I am confident hair clips would not last in her hair.

Andi has taken to not only standing at the tub full of DVDs blocking her from the volume knob on the receiver, but is putting one leg up on the tub, and just starting to get that second leg up onto the box.  I haven't been able to get a photo, or video of it just yet.  ...I guess making sure she doesn't fall off of it seems more important at this juncture.  But soon, I hope to get a photo of the creepy crawling Bean.

Well, the download is taking less time than projected.  Only 3.5 hours to go!  Yee Haw! Unfortunately, we'll be living high on the hog at our friends house tonight by then. Luckily, they are already aware of & used-to my dusty social skills.  *insert sigh of relief here!*

Bean Stands

Unkie Chris 'demanded' more Bean videos.  Here's one showing pretty much what she does all day, around various parts of the room.

I was debating growing her hair more, but after watching this video, clearly - the kid needs a trim, and maybe even a brushin'.  Yikes.

Miss Pouty Pants Celebrates Ginga!

I just dropped Ginga off at the airport, and honestly, I cried most of the way home. She has been out here all week visiting our Bean.  Andi now signs & says "MahMa" (Grandma), it's pretty cute.  It was fun for Ginga to see just how much things have changed in the past three months.  She agrees with me, that the blenderized diet has been instrumental to Andi's progress! Andi didn't puke once while she was here, and last time (Christmas), she was puking almost every feed.  Ginga was also amazed at how much more active and advanced her motor skills are!  It was a fun visit, although short!  Thanks Ginga for everything!  We love you very, very much, and thanks Dad for sharing her!

What's funnier than funny, is that usually when Ginga visits, Portland weather gets cracked out whacky.  Once again, this visit did not disappoint.  We saw snow, rain, sleet, hail, wind, more rain, more snow, and to borrow from Oprah!, some "crazy-ass" weather.  All the while, Ginga's friends reiterated how glorious the weather back home was... 80's.  I think Ginga saw everything BUT sunshine here.  It just bites my butt how sucky the weather in the PNW is... I absolutely HATE it!  Spring shouldn't be shades of grey, but warmer temps, knee length skirts with sandals, and not layers of sweaters, vests, and hooded jackets.  SO SICK OF IT!  This time of the year is the hardest time for me to accept the weather.  *insert eye roll here!*  Things might be easier to tolerate if we were able to get out of our grey sky doom, i.e. go anywhere but here!  We're itching for a trip to New Orleans, smell the jasmine (since mine died over winter!), and savior the sunshine in flip flops and sensory overload.  We love us some New Orleans!  Anywhere, but here.  Daddy Bean is busy with a massive project and traveling all over these next few months.  If my checkbook wasn't empty, I'd be happier than happy to pack up the kids (Bean & Mad) and head out on the open road.  How great would that be!?  I can do my work from anywhere, and yet, I can't afford to go anywhere.  Sucky-suck-suck.  I think Andi would benefit from some natural vitamin D processing.

Wowza, I think Miss Pouty Pants needs to get ovah! herself!  I think I'm pouting cuz Ginga's on her way home.  For someone who treasures her family, having them all so far away breaks my spirit when I get a small dose of having them around.  Therefore, we're gassing up the truck and heading your way! 

*kidding Dad!  don't panic,
...yet!* 

:0) 

Thanks again Ginga for everything!!!  So glad to have you out here!  Next time, we're meeting in Maui where we can enjoy lots more swimming with Beano!  I'm already packed!  ;0)  ...Least it won't snow! 

Here's Andi in her new swimsuit:

Signing Time - The Quiz

Late Friday night, Andi and I engaged in a Signing Time quiz.  She probably knows about 30 signs now, although she hasn't fully mastered some of them.  I need to write down all the signs she does know, because it's difficult to conjure the list when in quiz mode. 

Attitude Adjustment

So last night, I went and spent a ridiculous amount of money to get my hair done.  I think the people in this salon make more per hour than most attorney's!  Well, it feels like that when it is time to pay the bill.  While getting highlights applied, which is like having layers of your hair painted with goo and wrapped in tinfoil -- it's very glamorous, I was updating the stylist on all things Andi.  When she was done applying the magic potion to make my hair look sun kissed, instead of water logged from all this nasty rain, she left me with some magazines while my hair processed.  When she returned to check on me, she pointed out that the only other customer in the salon was with her young daughter, and getting her hair shorn, as she has cancer.  I hadn't paid attention, as I was engrossed in flipping the pages of a magazine, something I'm rarely able to do anymore.  So, I glance, without trying to look or worse, stare.  And sure enough, all her hair is on the floor and her young daughter is sitting in the chair next to her. This lady is maybe a few days over 40, and apparently, this is her 2nd battle with cancer. We discussed whether or not we would not only cut off all our hair, but, would we bring the kid to witness it?!  It was a rather interesting discussion, and I felt that the lady took control of the situation, and bringing her kid kept her involved, and a part of the fight.  The ladies' friend arrived and gave her a big hug, they cried, and the young girl flipped through a magazine, seemingly unaffected.  They later fitted the young girl with her Mom's wig, and she played in the mirror like a kid, having fun.  They left arm in arm, with big smiles, and some incredible energy effervescing off of them.  It was contagious.  It reminded me of the young boy in the hospital riding in a wagon his parents pulled around the hospital floor, his head half shaved with a big surgery scar going across his skull, and one of the biggest smiles I've ever witnessed.  It was therapy in its purest form.  So, here's this lady fighting the big fight, taking control of the inevitable hair loss, and full of life.  It reminds me that although I worry about Andi and everything she has yet to overcome, or I worry about bills, or whatever clogs the noggin, that it is so small compared to the fights other people face.  It reminds me to savior what I have, treasure the little victories, and continue to fight for more -- all while enjoying even the hardship.  Health is something to hold in highest regard, and if you have it,  you have NO worries!  Jobs, money, if your kid is going to play the lead in the school play - it's all inconsequential if you have your health.  So, I sent out my good vibes to the lady from last night and her battle.  I drove home, hair perfectly coiffed, and checked my own attitude. I felt myself smile and adjust my appreciation for all that I have, and everyone I am lucky enough to share it with.  I remembered the friend that showed up to share a hug and tears with the lady, and it reminded me that I have several friends I don't see or talk to enough.  I need to reach out more and let them know how important they are... and most of all, I came home and gave Andi a huge hug and spent the evening praising her big crawl, sitting up (NEW!), and her pulling herself up wherever she can.  She's getting stronger, and it makes me stronger!  My attitude today is very much in check.

weigh-in

Andi weighed in yesterday, 17 lbs, 12 oz's.  Definitely an improvement!

I filled her full of malt o' meal and blended food prior to the weigh in, but still, she's heading in the right direction again!

Chubbing Up A Bean

Yesterday we went to signing group in the morning, and swimming in the evening.  We met our OT at the pool to make sure we're doing everything we can in the pool to help work her out properly.  Last night, Andi tried and enjoyed Jello for the first time.  Today, she tried and enjoyed Malt o' Meal with butter and brown sugar.  YUM.  I contacted her Pediatrician today to follow up on a few things, one being a weight check.  Shortly after I sent the request, our favorite nurse called to schedule us to come in!  So, in addition to her blended meals, we'll be offering up a lot of stuff in between.  If her weight isn't up much, then I need to start getting up in the middle of the night to give her a couple syringes of food.  It's either that, or they might suggest the overnight drip again - which would tether her to the backpack again. I seriously do not want that - so - I would rather get up throughout the night to try to give her more.  I keep thinking about how hard she works at night and suspect that is playing a role.  On a side note, I've started to notice how certain clothes are no longer fitting.  Baby girl is growing in length. Just need to pack on some girth!  It's almost lunch time, I think I'll bust out the Haagen Dazs & Nutella. 

Beano is playing with her pop-up animal toys.  Instead of pushing the buttons to "pop-up" the animals, Andi takes the whole toy and slams in on the floor, which causes several of the animals to "pop-up" at once.  It's annoying, but rather clever of her.

It's high time to start chubbing up the Bean.  Going to work on it even harder.

A Busy Week

As the Bean snores in the other room, I sit here and yawn.  It's been a busy week.  We started swimming Monday night, and will be meeting our OT there next Monday night.  My hope is to get additional ideas of what we should be doing in the pool, that maybe I hadn't thought of.  Our OT said that swimming is probably one of the best things we can do for Andi.  So, we will go every Monday and Wednesday night, as we can fit into our schedule.  We also will be going to signing group on Monday's as well.  I've noticed this week especially, that Andi has signed more and more.  She has taken on several new signs, and is using them correctly.  I keep challenging her, quizzing her, and she keeps getting things right.  Yesterday, we had a hearing test.  Andi again, tested better on hearing with the hearing aid.  She is just below 'normal', in the mild hearing loss category, with her hearing aid on.  She also is hearing lower and higher tones than previously recorded.  I purchased some swimming plugs for her, that are fitted ear molds especially for her.  We can use them in both the pool and the tub, which will be nice, because I've been very overprotective of her ears, and trying to stop every drop of water from coming anywhere near her ears.  Despite having tubes to help her ears drain, I don't want her to endure any more ear infections.  So, these plugs should help us keep water out.  I hope Andi grows up in the swimming pool like I did.  I reminded her the other night that Grandma Andy was a big time swimmer when she was young, and I was a big time swimmer when I was young, so that it is my hope that Andi enjoys swimming as much as we did.  I think she will.

I've noticed that Andi's hands and feet are growing.  This morning, I noticed how long she's grown while sitting in her bath tub.  She's grown!  Yippie!  Still hoping to pack on the pounds!

Earlier today, I stumbled onto this article.  It's a great explanation of the heart surgery Andi had when she was 13 weeks old.  Surprisingly, it doesn't read like a page out of a medical book. 

http://www.columbiasurgery.net/2012/02/24/spotlight-on-pediatric-congenital-heart-surgery-atrioventricular-canal-defect/


The kid is still snoring, and I still have much work to do.  Break time is over!  *insert yawn here!*