4th Birthday Photo Session

4th Birthday Photo Session

Monday, October 31, 2011

Standing Bean!

Andi surprised us last night, by showing us how ready she is to take on the world.

Sunday, October 30, 2011

Andi Turns 17 Months!

Friday, Andi turned 17 months old.  I'm sure I told her that and she probably responded by puking.  17 Months, I can't believe it!  Andi's doesn't appear to be packing on pounds, but, she does seem to be progressing in strength and skills.  Andi's now doing what her Dad calls, 'Big Crawl!' which is get onto all fours and hold herself upright.  She's also doing some serious tummy time in which she gets up on her elbows and looks around and up, from the view of being on her tummy.  It's been amazing to watch these changes.  I'm trying to capture photos, but, haven't got a really great representation just yet.  In her 'exersaucer' she spinning herself around and standing upright for longer periods of time.  She's definitely getting stronger. 

Our 'organic' pumpkin that we got at the pumpkin patch a few weekends ago, decided to start decomposing on our front porch.  Needless to say, we have to go pick-up another one before Halloween!  Anxious to dress Andi in her super cute costume.  Although we don't really know our neighbors well, we're looking forward to toting Andi to a few nearby houses in her costume to show her off a bit.  They all seem to know she's had a rough start, so, it will be nice to show her doing better than when most of them have really seen her last.

Here's some photos from the big ol' 17 month old.  Hopefully, by now, she weighs 17 lbs.  I can't tell, other than she seems stronger and longer.

"Big Crawl" position

Pretty Andi!

Tummy Time!


Smiling For The Camera!

No Hands!



Trying to call Ginga!

Dancing With Daddy!

Trying to steal Daddy's slippers!

"Hi Maddux!"


"oh, s-m-i-l-e!"
FALL 2011

"Momma, I'm tired. Can I get out now?!"

"I don't have moves like Jagger, I've got Freddy Mercury moves!"

Big Crawl position!

'huh? what? uhm, I'm busy!'

Tuesday, October 25, 2011

Bean Gets A Flu Shot

Bean & I went to pick up a refill prescription again today.  While there,we decided to stop by and get our flu shots as well.  Most kids, and many adults, flinch at the idea of a shot. Needles make most people run and hide.   Make most kids cry and cry.  Andi sat there and took it like a solider.  She barely flinched, and cried for maybe five seconds.  Yeah, five seconds.  I said & signed 'all done!' about three times.  We walked out of there and Andi said all the way to the car, with gusto, 'All Done!'  She is such a champion.

See, kiddos like Andi have been through SO much, that something like a shot, is nothing.  I mean, really, it is nothing. I didn't even feel my shot, best shot ever actually.  Although, now my arm hurts.  It feels like my brother punched my arm like he did when I was 12. 

I finally got through on the phone to dispute the two bills I received.  Both are sending them back to be reviewed, revised.  I hate that sometimes you have to be nasty to get them to hear what you are saying.  I had to tell the one person that they can't bill her one anesthesia service as a professional service, that it belongs under the in-patient hospitalization, which has a cap.  She apparently didn't understand what I was saying until I got firmer in tone and explained, 'look, this was her 6th surgery, 6th anesthesia service, therefore, I know how it should be billed.'  That got her to shut her trap and she said she'd take care of getting it resolved. Now that's what I'm talking about!

Monday, October 24, 2011

Pukey Puke

This past week came and went in a flash.  Ginga was here and now she's back home.  It really flew by.  Sadly, I didn't make any progress on my massive "to-do" list while she was here.  Seriously, it was a blink of an eye.  Andi went back for a check-up with the peds surgery nurse, and our surgeon stopped in to check on her as well.  Andi actually lost an ounce, but they attributed that to the leveling off of TPN weight.  I was expecting her to be in the 17's, but nope, she's at 16 lbs, 2.3 ounces.  Her puking seemed to be getting better, but she's since come down with a cold.  Ginga and I felt that it was the cold causing the pukes.  Last night, I vented a massive amount of air out of Andi's stomach, and again today.  Maybe she swallows a lot of air through the day?!  Either way, her stomach doesn't seem to want to process all that air, so I think it just sits there and collects until the pressure gets too much, then it forces some out with a good heave-ho.  I dunno.  I feel like I've been to medical school, doesn't mean I actually have.  I just know that this problem existed as long as I can remember, and now that it isn't able to leak out the g-tube, it has to either get processed or pushed out one way or another. Frustrating.  But, the good news is that the new site doesn't leak a drop! Nothing.

The surgery team cleared Andi for swimming.  Although she has a cold, I am anxious to really get her in the water.  Her OT thinks the water would be amazing for her.  Therefore, tonight, I'm planning on filling the jacuzzi tub and getting the Bean in a "pool" of warm water.  I won't fire on the jets, but, we'll work up to that.  I imagine Andi will enjoy that aspect, once she gets used to the water.  When she gets better, we're going to go with our OT to the community pool for some hydrotherapy.  I think she's expecting Andi to do laps... hahahaha.. would be great for her upper body conditioning.  We all know she can certainly kick those legs at hyper speeds.

Andi wants to say sorry to Ginga for getting her sick!  She says 'bah, bah, bah buh - dadah, da!' Which translates, 'thanks for taking such good care of me Ginga!!!!'  ;0)  I'm just sorry that you got her cold!  I hope you get well quick!  I am still battling the cold, trying to keep from its full fledged assult on me, but I too, feel like I've been dragged behind the truck for miles on a dusty road.  Perhaps that is why my massive to-do list is still a mile long.  Puke.

Well, I just opened the mail to find a big fat bill from the hospital.  Andi's last hospitalization, only showing one of the two surgeries, billed insurance for $52,434.57.  Yikes! They show my out of pocket about three times what I'm expecting to pay, so, I'm off to call about this bill.  'Uhm, yeah, I don't think so!'  Her inpatient room alone for 11 days, $22,869.  That's some serious 5-star accomodations.  Too bad it wasn't one of those glass bottom huts over the water in Fiji that I always dreamed of enjoying.  As bad as all these bills are, I can't imagine and don't want to experience what they'd be without my insurance. Scary stuff.  It makes me want to pukey puke.

Tuesday, October 18, 2011

Walking Backward & The Pumpkin Patch

We took Andi to her first pumpkin patch this past weekend.  It was a cool, sunny day... a shocker!  We rode the cow train, the hay ride, and picked out our first pumpkin as a family.  We got some kettle corn, which Andi had a small taste of... and after a few minutes, she puked..., so we left.

Today, I got some video of Andi in her gait trainer.  She has to be pulled forward, but backward, she's got that down!  Her hair looks wonky because I gave her an olive oil treatment on her scalp this morning. 

Friday, October 14, 2011

Turning Big Dreams Into Reality

Today, Andi and I attended the PNBA (Pacific Northwest Booksellers Association) regional trade show, an annual event.  In the past, I've had to work the show. But these past few years, I wasn't really available to help out.  It's an opportunity for me as an office desk jockey, to see massive amounts of bookies (people who publish & sell books).  It's interesting, and there's usually a lot of colorful hair & outfits.  So, today, we arrived and got to visit not only with one of my bosses, and my coworker, but a former sales rep was luckily stationed at a booth just next to ours.  So, she got to meet Andi in the flesh!  Andi was her usual charming self, and had her manners on.  After chatting for awhile, Andi and I walked the floor.  In years past, I never really looked at other people's junk.  That never really interested me before.  Today, however, I wanted to look.  See, I've been working in the book biz for almost 17 years.  17 friggen years!  And, children's books never interested me prior to having Andi -- I can't imagine why?!  But now that we try to read to Andi, a lot of the books I have bought or received, are pretty dang bad.  You know it's bad when I'm struggling to finish reading to Andi a five page board book containing maybe a total of 30 words.  Yeah, there are a lot of crappy books out there for Andi.  And, so, since I was in the environment, I wanted to see what all was out there.  So, I walked the floor, pushing a big 4-wheel drive stroller, and trying not to run over people.  It was pretty cool.  From what I saw, & in talking with my former coworker, who also is a Mom, I got grand ideas for my 2nd and 3rd books I want to write.  I am finding a fuel inside that only Andi Bean enabled me to see.  It's pretty cool.  Now, if I can only find the time and be diligent enough to make it all happen!  Oprah may have ended her show and book club, but there are people still out buying books, or downloading them.  Therefore, I'm anxious to get started on tackling my visions, before they escape me.

Yesterday, I met with one of my many nursing student friends.  (Oddly, I didn't meet her due to Andi.)  She is using Andi has her subject for a paper. She said she knows of a few nursing students that would probably love to help me watch Andi. I can't necessarily afford it, but if I can get them to take a background check at the county, the developmental disability services office, will help with expenses for respite care, if and when there's money in the budget.  It doesn't sound like that happens all that often, but, it's worth a shot.  They recently got their budget, and it's first come, first served - so that money is long gone by now.  However, if I can get someone in the system, next fiscal cycle, maybe I can get help paying for it.  Or maybe I should just write my book, and live high on the hog off royalty checks when that becomes a big ol' bestseller!!!  *insert snorting laugh here*  Honestly, the book biz is harsh, and there's a massive amount of product out there for consumption. However, I know my subject matters are not out there and dang it, I have a lot to say!  Plus, I'm funny, damn-it!

So, I have much to do, and now just need to find the time to make it happen.  ...and some more energy would be nice, and maybe ten pounds lighter, and if I could have ridiculous amounts of money, yeah, yeah, yeah... all big dreams.  Just have to take those big dreams and turn them into a reality, for Andi.

Tuesday, October 11, 2011

Overcoming Obstacles

Andi's doing well, although she's puking almost every feed.  When vented, it's explosive. "Pop! ...Pop! Pop! Pop! Pop! Pop!"  There's such a build up of pressure, it makes me wonder if this air was the cause of the hernia in the old g-tube site.  She's always had the issue with air in her stomach, but the old g-tube site allowed a lot of that pressure to escape.  I've ordered a few more farrell bags.  Might as well give them a try again.  Although, this system demands that the bag be above her stomach, which makes me wonder how to make that happen, when most of her feeds are in her high chair.  I usually put the backpack under her chair, so no one trips on the cords, or her favorite past-time of dropping her toys on the floor doesn't cause a pulled tube, if dropped on the cord.

On a totally different topic, yesterday marked a very important date in our family.  Yesterday was the 1 year anniversary of Andi's uncle Chris's rebirth, as a non-smoker! Andi's fight last year, her struggle, encouraged her uncle to overcome a huge obstacle and quit harming his own health.  I hope one day Andi is fully aware of the good her tough road has done for others!  We are all very proud and thankful that you did it bro!  We love you!

In Uncle Chris's honor, we snapped a few pretty cool photos this afternoon!  Now if we could just overcome one more obstacle, her funky long locks!

Friday, October 7, 2011

16.23 lbs ... and sitting like a BIG girl!

Yesterday, Andi had her follow-up appointment with the surgeon & surgery nurse.

First of all, she weighed in at 16.23 lbs! 

They are aware that she's not yet tolerating full feeds and puking almost every feed.  They want me to go back to the 36 calorie formula and try to get her tolerated volume up.  We're to come back in two weeks, and reweigh.  If her weight isn't dazzling, they want to put in a PICC line (an IV into her arm, not as deep as a central line), and do TPN in conjunction with the feeds, to insure she's getting enough nutrition and not getting dehydrated.

So, I'm slowing down her feeds and trying to put more in, slower.  This means she's tethered longer, but, we have to do what we have to do. We're also to supplement her feed with additional boluses of Pedialyte. It's either that or tether her and torture her to get a PICC line in.  Plus, the TPN poop is something I really don't want to smell again.  Ewh! 

After our appointment, we had to stop off at the grocery store to pick up a few things. It was time to have her try to sit in the shopping cart.  She did really, really well.

I know, she needs a haircut, bad!  I held onto her jumper most of the time, and although she got a little woobly, she did amazing!  Sadly, I was so distracted by our big outing, that I forgot to pick up some essentials like diapers.  Oops.  Therefore, we'll have to sneak out again today!  We're going to see the Kaiser ENT as a follow-up to having her tubes put in her ears.  So, we'll be out and about anyway!  Practice makes perfect!

Wednesday, October 5, 2011

Gait Trainer!

Andi's OT brought a PT today to make sure we're doing everything we should be doing.  They also brought us an "Gait Trainer" which supports kids standing, and walking.  My photos aren't all that great, but she did really well with it.

Andi's legs are pretty strong.  She can stand with assistance.  However, this device gives her more support, independence, and it teaches her how to get from point A to point B on her own.

Just waiting for her to finish her late feed.  She's only getting 2 oz's (60 ml) and puking before we finish. This feed, was at 54 ml, and we did the 60 ml over an hour. I vent and get a lot of air out, plus about 1 oz in the vent tube.  I will ask about this tomorrow.  The GI Nurse said they might want to do another gastric emptying test, but she doubted we'd need to.  I'm hoping we just need to get her stomach used to receiving full feed.  I hope so, I really find these feeding issues rather old & tired. 

Luckily, we finished our final TPN this morning.  Now, we just have to make sure we're getting enough calories per day. It's amazing how stressful this is.  Especially if the Bean is going to be Gait Training her way around the kitchen.  A great first step toward walking!

Tuesday, October 4, 2011

Sayonara Sucky TPN!

Today, we are getting one more bag of TPN delivered.  We're going from 18 hour cycle to an 8 hour cycle, having increased her g-tube feed.  The feeds have produced puking, but, I'm trying to take it really slow, especially considering she's getting all her calories from the TPN.  I don't want to overload her system.  I've noticed I've had to vent her stomach a lot more lately.  Since the air can't escape through the leak like the old site, so, perhaps that air is causing the pukes?  I dunno.  All I know is that I'm anxious to say "sayonara sucka!" to the TPN.  Having Andi tethered 18 hours a day is very taxing and stressful.  It will be nice to just have the g-tube feeds again and really work on our oral feeds.  That will seem like such a piece of cake, compared to this.

With all the puking, I've been giving Andi a lot more baths. You aren't supposed to get the central line ports wet, so that has been a bit of a challenge.  When the nurse came to change the dressing yesterday, upon completing the bandage change, Andi promptly puked on it.  Oops.  In fact, she just puked again, and when fussing, I was able to vent a lot of air out of her g-tube.  Where this air comes from? ... I do not know, but I suspect it's her chomping on Froggy!  In any case, I've noticed in all of these baths I've had to give, that she feels a lot heavier.  Fuller, more solid, heavy.  I'm anxious to see what she weighs this Thursday.  I can't wait.  TPN has done its job, but we're SO ready to say sayonara sucka!!!

Saturday, October 1, 2011

Lighting Up The Town!

Tonight, we went to the Light The Night walk to raise funds & awareness for the Lymphoma & Leukemia Society.  Prior to meeting our friends to celebrate the health of one amazing survivor we feel honored to know, we had to get gussied up for our big night out.  When Andi awoke from her nap, well, when I woke her, we had a quick bath and then got dressed up to go paint the town a lovely shade of pretty.  As only a bean can do.  Prior to departure though, we had to snap a few pictures, to capture the outfit.  A cute little animal print and her jean jumper, all topped off with her pink Converse.  Yes, it's fall in the PNW, time to throw all the shorts, short sleeves and sandals into the donation bags.

"Do You Like My Outfit?"

*raspberry* "uh, I don't care if you like it or not!"
One thing I forgot to mention earlier, is something new I learned from the Peds GI nurse yesterday.  Andi can now be submerged in her bathtub.  I know that sounds weird, but, Andi has never been in water above her belly-button. My thought process was that if her g-tube leaked that much going out, how much would she take-in and... could it drown her?! She said no, but understood why I was so cautious.  She said it wouldn't be any worse than a kid drinking their bathwater. Because she has her central line ports, those aren't supposed to get wet.  So, therefore, I will try adding more water to the tub when she gets that line out!

So, the walk was pretty spectacular.  They handed out balloons with light inside of them.  Red balloons indicated support.  White balloons indicated survivor.  Gold balloons remembered someone.  It was pretty cool to walk with all these people, at night, in the rainy/misty fall Portland night.  What bothered me was all the kids I saw walking for the cause, let alone the one carrying a white balloon. It just seems like kids shouldn't have any concept of the word, cancer.  It's something that I'm very sick about, and don't understand why with all our advances, do we still not know diddly about diddly. This is a subject I intend to write about another time, as it has been rattling around the noggin lately.  I've got to find a place to put those thoughts, throw them somewhere, so I can get some peace.  If even for a moment.

Tonight, everyone was surprised how Andi stayed awake throughout the entire evening experience. I explained that she's really social and doesn't let herself sleep, seemingly for fear that she might miss out on something.  She was not pleased when I got her in her car seat, but before the truck left the parking lot, she was zonked out.  Other than seeing a lot of different people, she really enjoyed seeing the fireworks they shot off in honor of the walk.  It was a fun night, I'm so glad we were able to participate this year!

Getting Closer...

The stomach contrast study showed that Andi's stomach is recouping and functioning well.  We've started using the new g-tube site, with slow, small boluses. If all goes well this weekend with the slow increased g-tube feeds, we're going to start tapering off the TPN and continue to increase to full g-tube feeds by Wednesday, as on Thursday, the central line is coming out.  Andi's also been enjoying some disolvable solids in her high chair.  She hasn't been quite as interested in the banana pudding she has liked so well in the past.  I'll try something else next feed. I have thick liquids on the grocery list.  Not quite sure what that is, other than a drinkable yogurt or maybe a milkshake. But, I know I'll end up drinking the milkshake! 

Most importantly, Andi is now 15 lbs, 12.6 oz's. 


While in the hospital, her beloved dietitian said that based on Andi's charting and growth curve, she should probably be 17 lbs or so.  So, we're getting closer!  Another five days of TPN, Neocrack and some oral feeds, we should be catching up quick!  I made her Neocrack only 33 cal, as I didn't want to push her stomach too much.  The surgeon wants to get her off Neocrack, but, agreed we should only make one change at a time.  Perhaps by the six week mark, when we go to see him to put in a longer button, maybe then we'll be working on getting onto a different formula.  It was the perfect time to share with them my ant story!  As when we were on Alimentum and given the volume of the g-tube leak, how the stench of Alimentum lured ants to Andi's bed!  Although, now that I retell it, they probably thought I was just a horrible housekeeper.

The signs of waking at 6:30 a.m. are starting to show on the little Bean's face.  Tired eyes and yawns.  Maybe I'll get lucky and we'll get a nap today!  That'd be such a welcomed treat, as she certainly wasn't hearing my begging request to sleep longer this morning!  But, all in all, we're getting closer to where we need to be! 

Dissolvable Solids on a wild Friday Night!