It's Bean Forever...

It's been forever since I wrote about da Bean.  Things have been a bit hectic, a bit slow, a bit fast, and a bit different.  Andi has been treated with antibiotics, steroids and a breathing treatment for either a sinus infection/ear infection or a touch of pneumonia... the treatment is the same.  Well, actually...  We started out with just the antibiotics, and two days later - after a bad night of breathing and very little rest, we went back and did the breathing treatment and ended up with a week of steroids.   She started feeling better rather quickly, and rookie me, gave up early on the antibiotics only to have the bug flair up again.  Ugh.  After the holiday's, we are going to schedule a consultation with a chinese medicine man that one Mom from our hearing-impaired play group recommends.  Apparently, her husband studies with this man, and they think the world of him and his craft.  My thought process is it is worth a try, if this man can help strengthen Andi's immune system with herbal remedies.  She's been on antibiotics for years, and apparently, they aren't good for your immune system - go figure!?  So... anything to improve it would be greatly appreciated.

The good news I have to report is that Andi is eating most of her intake orally, drinking juice orally too.  She's "taken off" on the feeding, and it's been amazing to witness!  We're choosing to push it and let her get hungry.  We need her to feel hunger, and associate eating with satiating that hunger.  Since most g-tube fed kids have a serious disconnect with that association. 

Andi is working hard with her walker. Sadly, our living room is super small and she isn't allowed many steps.  We try to bring her walker with us when we're going to play group, so she can walk the hall or such.  Shocker, the weather outside isn't conducive to Andi working on walking.

We are finally hosting Flat Charlie this week.  Flat Charlie has been on the road almost a year, and has visited families all over the globe.  He visits a family and they take pictures with him to share on his Facebook group, and then they send him on his way to the next family.  Yet,  before he goes, the family adorns him with a token of his stay with them - some sort of decoration to commemorate his stay with that family.  Charlie's been here a few days and has seen much of the city.  He's helped out baking cookies that we'll be giving to Andi's Dr's, nurses & specialists that have helped us come this far.  However, Flat Charlie is really a tool to raise money for CHARGE Syndrome Foundation, and raise awareness for CHARGE Syndrome.  Here's the link to our personal fundraising page, if you feel so inclined to kick a few bucks in honor of our sweet bean. 

http://fifthannualcifc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1035740&lis=1&kntae1035740=65379BA2C2144D58B5DF8E2D93F1DA10&supId=350100758

As much as she's been through, there are many kids that have endured three times as much as Andi.  It's completely unfair that no one knows or hears of 'CHARGE Syndrome'.  That only 'autism, down syndrome, and cancer are the struggles you hear about.  Sorry, as a Mom who's daughter won the genetic lottery (sarcasm) -- 1 in 8 to 10,000 isn't 'RARE' to me.  My kid has been through much more than any autistic kid, or even a kid with Down's Syndrome.  Where's the funding for our syndrome?  Well, it starts with loud, obnoxious parents like me who are hell-bent on educating the masses without a microphone.  *stepping off soap box.*

In any case, kick us a few bucks if you can.  Trust me, I know it's the season of giving and all, and I don't even have a few bucks to kick in myself.  So, even just going to the page and reading about CHARGE - and somehow telling someone else about CHARGE... a grass-roots sort of spreading the word would be better than just closing this blog and doing nothing at all.  It is my hope that if enough people learn about CHARGE Syndrome, that maybe they'll start including it in the genetic testing they do when searching for issues.  All the fellow CHARGE Mom's have mentioned a pretty normal pregnancy with no idea their kid would be facing the seven layers of hell and beyond.  How fair is that?  *really stepping of soap box.*

So, we've been super busy lately between eating like a big girl, and playing tour guide to Charlie.

 

 

"1, 2, 3 ... A, B, C"

Miss Smarty Pants presents:

 

"1, 2, 3"

 

 

"a, b, c's"

The Other Side

This Friday when we attend the hearing-impaired play group at the preschool Andi might attend, we are supposed to meet a family whose 19-month old daughter also has CHARGE Syndrome.  In our 2 years and four months of living with a CHARGER, this will be the first CHARGE family we've actually met in person.  I'm excited to meet them, and honestly a bit nervous.  I don't socialize much anymore and sometimes feel I let the stupidest things fly out of my mouth.  Last Friday, I met another Mom whose son is also g-tube fed, and has trouble holding his head up...things we've been through with Andi, and I felt like I unleashed the verbal diarrhea of what we've been through.  It's almost like a verbal resume, 'look, here's a glimpse'.  It's awkward, and something that rolls off with very little effort.  I imagine after the horror of what Andi's had to overcome, I seem a bit brazen with my resume.  Luckily, those of us who have been through it, or something similar, it's received with a nod of recognition, empathy, understanding. It's what I imagine a survivor of Hurricane Katrina goes through when meeting a fellow survivor.  Interesting dynamics that bring people together.

Andi is finally wearing her hearing-aid full-time.  It's such an amazing change from having to hover over her for the full five minutes before she'd tear it out.  It's been such a nice change.  She's also walking eagerly with her non-medical walker. If only the room was bigger, she'd get more practice.  But, she's managed to walk one direction until she runs out of room, and sometimes she'll navigate herself to the other side and push herself back across the room.  It's pretty cool to watch.  Another thing Andi is doing is saying and signing, "A, B, C, D" and "1, 2, 3"  today we worked on "4, 5, 6" which is pretty fun.  She is such a little sponge, just eager for more.  It's such a nice change from where we were two years ago now... home, but on oxygen and just weened off Methadone and Ativan.  Getting to this side was hard, but, we're finally here.  And I'm excited to see what lies ahead.

Vacation Remembered

I haven't been writing much lately. I haven't felt much like writing, but outside of that we've either been busy or sick.  We're still fighting off the remnants of cold #847.  It's annoying.  I bought even more hand sanitizer, and am debating leaving the house each day with all of us outfitted with rubber gloves. 

Several weeks ago, we took our annual 'vacation' (vacation really meaning that Ginga watches Bean and we get a rare night off)  and hung out with friends and family in the south. 

In Montgomery, we got to sneak away from the Bean for some early morning golfing.  We don't get out to golf much anymore, so this is a rare treat.  We were able to squeeze in four rounds in our trip!!!



One afternoon, we took Andi to the Montgomery Zoo.  We were expecting it to be a fuddy-duddy, but were blown away by it instead.  Although the exhibits aren't as large and 'true to real life' as they could be, the closeness we were able to get to the animals was awesome.  We even got to feed the giraffe's - which was stellar.  (These shots are from my cell phone.)

 

 

It really was a cool experience, and got some better reviews than the Oregon Zoo - whom we frequent often.

One weekend, we drove to Atlanta to fly down to see our long, lost friend.  Meaning, we lost her to the lure of Florida sunshine.  Sadly, I don't think she's coming back to rainy-town, U.S.A.  It was so fun to spend a weekend with her!  The second cool fact of that trip was that another friend flew in to spend the weekend with us!  It was a mini-reunion and it was AWESOME!  We sang, 'reunited!' (Peaches & Herb)... we laughed, laughed, laughed... and had some serious fun! 


view from one lunch spot in Florida.


we went swimming at the pool!


The next week, Daddy Bean and I stole away for a few nights in New Orleans.  We absolutely love New Orleans, and have often said that if they had the infrastructure and services Andi needs... we'd consider relocating there.  It's just that magical.  This time, we did a City Tour, which was really cool.  We actually got a first-hand look at what the whole 'fishbowl' is... we got to see where the city sits 6 feet below sea level.  We also got to see the remnants of Hurricane Katrina, which was disturbing.  Seeing the visible water line was pretty humbling.  We got to see things that are just better seen in person, than seen on TV or even at the Katrina museum.  We also visited the National World War II Museum, which was really amazing.  I think the most impressive part of that was the number of veterans that were viewing the exhibit with us. The museum was a bit overwhelming, but we finished our tour with an interactive movie that is narrated by Tom Hanks.  It was pretty cool.  Then of course, there's the whole intoxication that is the French Quarter.  The energy, the vibe, the views, the music, the food... oh, the food.  I still dream about it.

 

And, one of Andi's souvenirs!

Our last night of freedom found us in Biloxi.  We treated ourselves to the Frank Sinatra Jr. concert at the IP.  It was amazing, so cool we felt it was a bucket list item that we checked off.  That good.

 

All in all, we all got sick, got better, and have since got sick again.  Good times.

As I look out the window at the rain coming down, and I'm about to fire-up yet another cup of tea (insert eye roll here)... I can't help look back at our 'vacation' and seriously click my cold feet under the table eagerly.  I repeat, 'there's no place like home, no place like home, no place like home'.

Boo.  It didn't work.

Walking Bean

Andi made a major stride yesterday, and now she's doing it rather often.  Pretty cool milestone!

Turning Points

I hate to jinx it, but I think Andi has made a couple significant turning points.  First of all, Andi has been wearing her hearing aid all day long.  She has even been to kid's club with it in, twice. If it comes out, she whines and gets mad - demanding it gets put back in. She's eager to say new words every day!  She's like a little sponge just trying to gain more knowledge.

Our second turning point is oral feeds.  We left her feeding specialist earlier this week with the goal of getting Andi to take two feeds by mouth, rather than through the g-tube.  The past two days she's eaten just about everything offered her.  My only fear is that I don't know how many calories she is getting with my doctored mashed sweet potato or mashed potatoes, with all the additions I throw in to make it taste good.  Last night, she was having some cream of potato soup late in the evening.  She was extremely tired, and instead of swallowing it, she accidentally inhaled it.  It so went "down the wrong pipe"...she coughed and coughed and coughed.  I felt bad for her, but find that when she gets that tired, she doesn't fare as well.  She tends to fall over and smack her head when she's super tired.

It is my goal to get up in the middle of the night and give Andi an additional g-tube feed.  It's my "goal"... so far, I haven't been able to wake up.  I'll keep trying though.  She weighed in at the feeding specialists office at 21 lbs.  Slowly, but surely, we're gaining weight.

Humbling The Whiner Within

Been away from the blog for awhile. We spent two weeks in the SE, visiting family and friends.  Daddy Bean and I also stole away to New Orleans for two nights, and a night in Biloxi - where we saw Frank Sinatra Jr.  It was most precious time away from the Bean, which is so ridiculously rare.  Unfortunately, we were both fighting colds... so, it wasn't quite as fun as it should've been.  I also found that despite being sans-Bean, we still spoke of her often.  Often quoting Yo Gabba Gabba lines from the show.  For example, there's a store in New Orleans called 'Razzle Dazzle!' - so of course, Daddy Bean says 'Razzle Dazzle' in his best Muno voice... as that is something he says often.  We giggled.  We haven't been giggling much lately, so it was definitely a refreshing change.  We've decided that if they'll have us, two weeks with Poppa B and Ginga is really better for us, for Andi.  She gets more time to know them and enjoy them.  It's so far to go for a short period of time.  Luckily, we can work wherever there's Internet connection, so, that enables us to go and do just like we are usually stuck here at home. 

Andi has been busy working on her feeding, OT/PT - balance/walking issues.  She's coming along well and we've been given homework by our therapists.  Currently, she's on her 3rd hour of keeping her hearing aid in.  I'm about to take it out only because I need to get her down for a nap.  She's still not keen on nap-time, but, she'll be more than a handful for Daddy Bean tonight if I don't get her rested.  I can deal with nap-less Bean, but, he's not a fan.

I seem to keep getting big fatty bills from the hospital.  I'm already on a payment plan for one from last year.  Luckily, they let us pay it over a year, interest free.  However, I just got another one, and I'm about to puke.  I seriously don't understand how someone with double insurance is stuck with these large bills.  You'd think that we'd taken the necessary steps to alleviate us from the financial burden of a "special needs" child, but, apparently... it just isn't so.  I'm sitting on three bills from the hospital now and need to find my level head and strong stomach to call and find out WTF!!!   A lot of medical billing is incorrect, but... we haven't really found that to be true. In any case, it's stressful.  I feel like an old fart saying I remember easier times when we had money in the bank, room on our credit cards, and an easy, breezy light lifestyle.  Seriously, I miss that feeling.  Instead, we have the polar opposite and it's choking.  No one seems to really talk about the financial strain of having a kid with special needs.  You add the vast array of therapy's and medical procedures needed by a kiddo with CHARGE Syndrome... and wowza... it's a whirlwind of hardship. Yet, we'd pay every penny and then some to make sure Andi has the best possible foot forward.  It's just overwhelming at times to really express the high's, low's and all the levels in between. We're in a unique spot because we make too much money to qualify for assistance, yet, we still have the same bills as we did before Andi, then all the medical bills/copays, and it just makes for additional stress -- as if Andi's well-being and development isn't stressful enough.  Ah, the joys of parenthood!  I didn't read this one in the brochure though!!!  Enough venting.  It doesn't actually make me feel any relief, just makes me feel like a big ol' whiner.  I have so much to be thankful for...there are kids in the PICU/NICU struggling.  I read about them everyday and it keeps my gratitude in check, humbles me with my superficial worries, and reminds me to savior the many positives we have surrounding us.  Complaining about money woes will always be something all of us do, it's natural.  However, in the big swing of things, the bigger picture, our woes are nothing when we have health.  Therefore, I bow in respect. I choose to send my best positive vibes out to the world, my thoughts to those kids who are still fighting the medical fight and the biggest hugs to their family. I understand.

The Entertainment

I just turned on Yo Gabba Gabba! to keep Andi entertained and quiet. I am stealing these few minutes to myself.  It doesn't phase me much that I once said I wouldn't use TV to babysit the kid.  Yet, I do it rather often.  It's funny how I said I would or wouldn't do this or that, and then when I actually got into things, all rules were out the window.  I imagine that's true whether or not the kid has health issues.  At least Andi isn't watching Barney or the Tella-Tubbies... or the Wiggles.  I've had objections to those even before Andi arrived.  Right now, Andi is learning about robots and electricity, through song.

I admitted to a friend last night that I awoke in the middle of the night and found myself singing Yo Gabba Gabba songs.  No joke.  It happens more often than I should probably admit. 

This morning, Andi awoke about 3:45 and gyrated in her crib.  After about ten minutes of this, she decided she was time to join Mom and Dad in the big girl bed.  When she stands, I hear her playpen creak, and know what's coming.  So I rolled over and helped her onto our bed.  Usually, she just wants to snuggle and will go back to sleep.  This morning, she thought it would be more fun to "play" and kept us up for a good two hours.  It was really annoying, tiresome, and irritating.  Cory had to get up at 6 for an early morning conference call, and luckily, Andi and I quickly crashed for another hour before I had to get up.  Miss "Play" slept until just after 9, despite our attempts to wake her.  Annoying.  She won't take naps, and gets so dang tired... frustrating when she doesn't comply!

On that note, I think I need another cup of coffee.  Luckily, the entertainment is still going for a few more minutes. 

2nd ANNIVERSARY!

Today marks the 2nd anniversary of Andi's open heart surgery.  Two years ago was one of two of the hardest days of my life.  But here's Andi today, chatting up a storm, crawling all over, climbing up everything, digging through everything, and basically making me chase her all over the house.  Now when I say, 'she has the biggest heart' - I no longer mean that her heart is enlarged due to heart failure, but, she has the biggest heart full of life, light, fun, and energy.  She's an amazing little girl who has taught me more about living, love, selflessness and work than anything ever could.  She has made me a better person than I was, and yet I hope to grow even better each day.  She's my little miracle.  My little love.  She's my lil' Bean. Andi Bean.

Happy 2nd Anniversary!!!

Live life. Take care of your body, your heart, mind and soul.  Breathe.

Defluxed!

Yesterday, we made the trek up to the hospital for Andi's 3rd VCUG.  This time we were checking to see if the bladder deflux procedure we did in June was effective at ceasing Andi's bladder reflux.  It was a cool morning.  I wore a light sweater and actually turned the heater on in the car.  It's the end of August?  In any case, I reflected during the all-too-familiar route to get there and thought about how I used to do that drive every single day.  It was oddly different yesterday.  The drive didn't bother me at all.  That heavy weight of dread was completely gone.  Our lives are so much different now, so much better.

So, as with every medical appointment, they wanted to get her weight.  The nurse said they didn't have a baby scale and asked if I would get on the scale holding Andi, and without holding Andi, so we could deduce how much she weighs.  I should my head with a firm 'hell no!'  Luckily, this nurse understood and decided to do it herself.  She determined Andi was roughly around 9 kilos, which is 20 lbs. We went through the whole sedation process rather easily, we're pro's -- we've done this before.  Within minutes, the Versed took effect and Miss Stone was back.  We got to see Misty, whom is one of the radiologists we know well.  She's so good with Andi.  However, it was our favorite Tom who did the test again.  He told me he had a patients Mom whose kid was also having a VCUG, and she said to him, 'you must be Tom!' and he said 'yes, how did you know that?'  She told him in researching the VCUG procedure, she encountered Andi's blog and read all about it, including him. I was a little shocked, a little embarrassed, and yet - rather proud.

So, the VCUG showed that the bladder deflux procedure we did in June was successful and Andi is no longer having bladder reflux.  We meet with the urologist next week and are expecting him to have us cease using the antibiotics she's been on since July 2010.  Thus, we'll be down to one medicine.  One!!!

In the afternoon, we met with the Kaiser PT.  It had been a full year since we saw her last.  I was so overwhelmed with various appointments at that time, that I just discontinued PT, as OT is rather similar.  However, now... it's time to do both.  Really, all we have left to focus on is our feeding issues and balance issues.  Andi was pretty tired at this point in the day, but it was a good reintroduction to all things Andi, and where she has progressed to.

Yesterday also reminded me that Andi's heart surgery anniversary is quickly approaching.  We still send her heart surgeon a card with an update. Guess we'll add that to the rather long to-do list.  All while the Bean tries to crawl into my lap.  The other day I went to IKEA and bought a tiny $20. desk to put in the living room.  Having Andi crawling on my back while I sat on the couch trying to work wasn't working for me.  Now, I sit in a chair at a desk and am hoping it helps improve my ability to get things done quicker, with less irritation.  So far, she's tried to climb up my chair twice and sit in my lap.  Oh well.  I like having a desk better anyway. I keep throwing toys at her, and it works for awhile.  We'll figure this out.

Oops. Oops. Oops.

Okay - so our VCUG is next week. Oops.

I imported the contents of the old blog, and one post that was just a draft before I shut it down is now showing as today's post - rather than May 29th or so when it was written. Oops.

In shutting down the old blog though, I also had to shut down the shutterfly or whatever program that is... of photos and I think I deleted them...so all the photos I had on the original blog are no longer available on the blog.  Oops.

I took Andi and Maddux to the park.  We found a shell of a tennis ball and threw that for Mad, and I held Andi's hands while she walked and walked and walked.  Now I fear she will be asleep when her OT arrives today at 2.  Oops.

Andi has been working really hard on saying words lately.  I've been able to capture some video.  It's really easy to throw that up on FB, but a big ol' process to put it up here.  I will do that soon.

Andi Bean's 2nd Birthday Bash!

Monday, Memorial Day, Andi Bean turned 2 years old.  Although completely rewarding, these years have not been easy for any of us -- mainly Andi, whom has had to work to overcome obstacles.  This kid has had deal with a leaky g-tube failure, vommiting more than one kid should, work hard at hearing, gross and fine motor skills, and try to learn to balance.  Andi has been through a lot in 2 years, and therefore, we don't just celebrate -- we throw a big ol' birthday bash!!!  This year's was a little bigger than last year, and we still had many people we didn't extend an invite to because our yard isn't that big, and frankly, more people mean more expenses!  Sorry.  This party was, and I quote, "a tad excessive for a 2 year old's birthday!"  I won't attribute that quote, but, I think I'm related to the person!  HA!  But, when the food was eaten, the cake was cut, the presents were opened and the people departed, it was said what a nice party it was!  When it comes to Andi and the seven layers of b.s. she's had to endure, no party, no celebration in my mind could ever be excessive.  This kid deserves it, and thensome.

The weekend started early for us, as Friday, Daddy Bean took a very overdue, a very rare, day off.  He had returned from his work trip at 1:30 a.m., as the planes were running late, that Friday morning. Thank goodness he did not have to log to start work that Friday morning.  Yikes!   We had made an appointment to go get family photos taken that Friday morning.  We bought a Group-On last year, and went to use it at Christmas, but ended up buying a package deal then.  So, they said to bring her in around her birthday to use the Group-On.  Instead, we had a family sitting because we've never done it, and have maybe one or two family photos total.  We were a bit overdue.  After our photography session, we went to Helser's - our favorite breakfast place and got some super yummy grub.  With our bellies full, we headed over to our big destination of the day - the zoo!  This time, we brought our cameras!  (although the photos are still on the camera - and therefore, I'll add some next time ... although our elephants probably look the same as your elephants!)

The weekend really got started when Poppa B and Ginga arrived Saturday night.  Their flight was early, and as Andi and I were approaching the greeting area, I could see them coming out looking desperately for our Andi Bean.  So, I did what I normally do - because I am a dork... We hid from them. Andi was snoring on my shoulder, but quickly awoke when Ginga arrived and as if on cue, the song 'Reunited' by Peaches and Herb was filling the air (in my head.)  Andi wasn't sure about Poppa B at first, as men with mustaches &/or glasses, tend to not be received well.  We assume she sees men with those characteristics as a Dr.  Understood.  But, within 20 minutes, the love-fest was resumed and she seemed to get rather close to her Poppa this time!  It must be said that within a half hour of getting to the house, the clouds closed-in and unleashed a massive downpour, with thunder and lightning as well.  It was absolutely ridiculous!  Ginga and I just laughed, as everytime she comes into town, the weather goes completely whack.  It's bizarre.  It snowed the last time she was here, in March.  Her first trip here, we got 18" of snow and the city went into lockdown for three days.

Sunday was party-prep & a lot of shopping with Poppa B and Ginga taking on the Bean duties.  My Dad was introduced to a different side of Portland -- that of our Costco on a weekend.  Not only is our store much bigger than the store in his town, but, it's about 100 times busier.  Apparently, our Costco patrons are rude, as well.  I probably wouldn't argue with that statement though.  But, my Dad braved a Costco trip for the last of the party food and our special order cake - while Ginga tended to a sleeping Bean in the car.  It worked our really well, and I got a refresher on the different levels of eyerolls my Dad exercises.  It was like being on the golf course, without clubs.  Classic.  We also went to Babies R Us/Toys R Us because Auntie Shell-Shell (Ginga's daughter/my step-sister) and Uncle Art gave Andi a gift card.  Therefore, I wanted Ginga to help me pick it out!  Afterwhich, we went to my second Dollar Tree store in search for helllium balloons.  They did not have any, but told me that the other Dollar Tree store fairly close to them did have them.  So, we hit up Dollar Tree #3 and it was a balloon party!  I bought 20 balloons!  Sunday night, we all went out for dinner, because frankly, my kitchen refridgerator was overflowing with party food.  We went to our new favorite Chinese restaurant and it was super yum.

Monday, we decorated, finished the food, and were ready to roll as people were showing up at 4.  We've been watching a lot of Restaurant Impossible lately, so we did the burgers like Robert Irving suggests on the show.  They were pretty dang yum, although, by the time I ate mine - it was ice cold.  The party was very busy and I barely got to talk to many of our friends, but it was a lot of fun.  Andi seemed to really enjoy having everyone over, and was her usual entertaining self.  So, with all that being said, as instructed, less talky-talk and more PHOTOS!

VCUG #3

Tomorrow morning, we go up the hill to the hospital for Andi's VCUG #3.  Trust me, you don't want to know the gist of the test, but let's just say it doesn't look like fun!  We will be testing her "bladder reflux" to see if the 'bladder deflux' procedure we did in conjunction with the tonsillectomy/adenoidectomy worked.  They basically made mounds inside her bladder so that the urine can't shoot upward into the kidneys - which can cause UTI's.  The ultrasound we did last month showed the mounds were intact and appeared to be in the correct location.  This VCUG will determine if it is working (80% chance of fixing the reflux).  If it does prove to have worked, then we can get Andi off one more medicine - the antibiotic. Which would leave her with only one medicine left... *insert dreamy sigh here.*

Yesterday, I got the joy of paying two more OHSU bills.  One was $72. and change, and the other was $20.  Our plan to get secondary insurance to help us combat the co-pays that are milking us dry, hasn't worked to our advantage at all.  In fact, I don't think it has helped us at all.  I guess next time we should just use dollar bills in lieu of toilet paper.  Sorry, so glad Cory doesn't read the blog - he'd HATE that I just wrote that - but it really drives my message home.  Insurance sucks.  One big giant SCAM!  Especially when you have a medically complicated kid that requires not only various specialists, but various therapies too.  It all adds up.

Beano just woke up from her nap and is watching an episode of Yo Gabba Gabba (her favorite) while she wakes up.  She's so funny, she LOVES this show.  "Gabba!" is what she'll say, and she learned the word, "awesome!" from it!  It's one way I can usually get work done, and she'll keep her hearing aid in for it.  Today's super music friend show is a song about 'banana' -- I really like this song, it has a reggae style and it's all about bananas... But the musicians look like they're wearing the red outfits handed out at the penitentiary.  Yikes.  Now they're talking about making music with their bodies, which makes me instantly cackle.  All of a sudden I hear my brother ask "pull my finger!"   Classic.

Anyhow, if you have anyone you feel really wants to be a reader, please shoot me a note with their e-address so I can send out permission.  We have a few open spots.

Translation Affirmation

Last night, although we've been trying not to spend money, we went out for BBQ dinner.  As always, I was signing with Andi, because keeping her engaged is one way I've learned to keep her from getting out of the high chair.  [Lately, Andi has learned how to get out of the belts on restaurant high chairs, her stroller...]  I ended up putting in her hearing aid, and signed that it was 'loud' in there.  One of the servers, whom helped us when we first arrived admired Andi for her adorable factor, asked her age, and then asked when she turned 2, and said she had a boy who will 2 in October. I could tell she was shocked by her size -vs- her age, and mentioned to Cory after she left. Later, that server came back and said she noticed us signing with Andi.  I said, 'yeah, well, Andi is hearing impaired.'  She said it's one thing she feels bad that she doesn't know, and would like to teach her son.  I said that whether the kids are hearing impaired or not, it helps with language development, speech, helps alleviate terrible 2's frustration as it gives kids tools to communicate.  Then she asked about 'Andi's condition' if we wanted to share... which I have no trouble sharing.  So I started in on CHARGE Syndrome, seven surgeries, five months in the hospital. The lady started crying.  She apologized for getting so emotional and we assured her it was no problem.  It actually made me tear up a bit. She said as a parent, she can't imagine when we've been through, as she wiped away more tears.  It was rather sweet.  Educating people about CHARGE has been rather therapeutic, although I do it not to make people feel sorry for Andi -- but celebrate her, honor her by being better people - better parents themselves.  It just goes back to what I said a long, long time ago - when we lived in the hospital.  If Andi can help others be more appreciative of what they have, more patient with others, more empathetic, and just all around better people, then maybe all the bad stuff will not have been for nothing.  She's a pretty powerful little girl with a repaired heart of gold.  It makes this translated description of her name we found at Saturday market yesterday, all that more fitting.

Back By Demand!

Back by demand, it's Andi Bean!

Andi has missed her audience, and I've missed writing.  This site will be member-only though.

"uhm, Hello!?!"

Today, we got up at 3:30 a.m., to take Daddy Bean to the airport at 4 a.m. Yes, you read that correctly, 4 a.m.  Andi was so excited last night, that she refused to go to sleep on schedule, and despite snuggling with Daddy Bean.  It was midnight when he asked me to take her as she was still not sleeping.  I brought her upstairs for reasons I don't remember, and by the time I brought her back down a few minutes later, she was snoring on my shoulder.  For the next hour or two, she slept next to me on the bed until I awoke and put her in her bed for the next hour or two.  She was PISSED off when I put her in the car seat and the overhead light was on.  Once we got going down the road, she settled into her cozy car seat and resumed snoring.  When we got home from the airport, around 4:30, we quickly resumed snoring downstairs in unison. Even Maddux was snoring.  Well, honestly, I don't know if that's true, I was pretty out of it.

It was brought to my attention today that even though I know what day it is, I have no concept of the actual calendar, date and all things in between.  I had it in my head that I had to have all the stuff at the office today for the company trip to Book Expo.  My boss had to chill me out and make me aware that they weren't leaving the end of this week, but the end of next week.  What's embarrassing about that is my big ol' white-board calendar on my kitchen wall that I stare at daily.  ..."uhm, hello!!!"  Oh well, less stress for me!  Yea!

So, today, we drove out to the Columbia Regional office, whom handle Andi's hearing aid/audiology through the county Early Intervention Program.  Andi broke her hearing aid on the way home from Costco the other day, and the audiologist said she would fix or replace it.  Andi now is styling a purple hearing aid loaner.  This is her 3rd loaner.  I dread when we have to get our own, although the two insurance providers should cover it, it's replacing it that I worry about.  These ladies we work with are amazing and so kind, I'm so thankful to have them taking such good care of Andi!  It's tragic that programs like this are so easily targeted by budget cuts, and lack of funding.  Do you hear me?

After getting the hearing aid replaced, we went to the post office because Unkie Chris is also having a birthday this week, and Andi wanted to send him something.  Then we went to Dollar Tree and the grocery store to get initial birthday party supplies.  We had some fun, although the brand new Dollar Tree near us is out of helium.  That's a problem, as they do not know when they will be getting more.  We need to pick up our balloons closer to the party... but where?!  Dollar Tree is a one-time of the year excursion, for items like this.  I really don't want to go further into the poor house for something so lame as helium balloons.  But, Andi really like to play with the balloons - and her OT would state that getting her to raise her arms over her head to play with them would benefit her core and upper body strength.  Therefore, we will hunt affordable helium balloons, near and far.  HA!

With Daddy Bean gone out of town on yet another work trip, I would hope to get a lot of things done.  So far, I feel like a giant sack of potatoes (which I forgot to pick up at the store, by-the-way!) and foresee a very early bedtime for us.  I just hope this kid goes to sleep at a reasonable hour.  Lately, she likes to stand in her playpen sleeper and pound on my bed, as if to say, 'uhm, hello!  I'm awake!!!'  Therefore, when she's awake, I strike back with humor of my own:

Andi-The-Destructor!

*sing along with Andi*
"oops, I did it again." ...I broke the hearing aid!

At some point, on the way home from Costco, Andi broke her hearing aid into two pieces.  She snapped the connection between the plastic ear piece and the battery compartment. I was shocked and irritated at the discovery, Andi sat in her car seat and laughed.  As if to say, 'oops!'

We went to Costco to get gas, get coffee, and order her birthday cake.  Apparently, they only need a one-day advance, but, I gave them a week.  I picked up a few other items, most importantly, the damn Keurig coffee cups we burn through at a ridiculous pace.  If our house was bugged and anyone was listening to us, you'd often hear me utter with contempt, 'Damn you Keurig with your one cup coffee convenience!'   But already, I'm ready to fire up a fresh cup, as I'm dragging hard today.

Saturday, we did the Heart Walk in the morning, and busted butt on the house in the afternoon.  I was able to stain our front porch.  Luckily, it didn't start raining until Sunday afternoon.  Sunday, we decided to play, so we drove out to the beach and tooled around in Cannon Beach and Seaside for the afternoon, having lunch at our favorite restaurant, The Wayfarer, whom catered our wedding.  Andi was a toddler and decided she'd rather eat the crayons, than color with them.  By the end of the night, we were all exhausted and Andi decided to close the evening with a good old style projectile puke. 

This morning, Andi and I got up early.  While waking up, Andi decided to take off a part of her diaper and then go potty.  Luckily, the diaper contained the contents, but we've had some run-ins with the poo monster lately.  Not fun.  At what point will it be okay to duct-tape the diaper to her?!  I'm tempted.

Andi-The-Destructor has been blazing a trail, leaving a pile of whatever in her path.  At least she's keeping things interesting!

A Very Long Week!

This concludes a very, very long week.  Daddy Bean left last Sunday, yes ... Mother's Day, for a week in El Paso for a training class.  Luckily, Andi and I get along great -- and so the need for reprieve has been nil.  We've worked really hard to get the house cleaned up in pre-preparations for Poppa B & Ginga's arrival.  [why does it take company coming to get my house really clean?]  While we got a lot of things done, it seems like I knock one thing off the list, and then add three more.  Work is also getting busier, and I've found myself so tired today that I could not figure out why I was getting error messages on an upload.  Try and try again, uhm, I tried eight times before I really saw my error.  Oops!  I probably could have saved myself a lot of frustration if I wasn't so pooped!  So, it's with the conclusion of this week without Daddy Bean, that we might actually find ourselves at the airport at *gulp*  11:50 to pick him up with glee, rather than making him take a cab!  However, we have to get up at a ridiculous hour tomorrow to be at the Heart Walk.  As part of the Doernbecher Children's Hospital team -- a division of OHSU... we're supposed to be able to push ourselves to the front of the line and lead off the walk.  I think we'll hang in the back and let the crowd part a bit.  None of us like big crowds.  Well, Andi might.

Thanks again to my four donors for the Heart Walk. Because of you I made it to my $200. fundraising goal, which makes us pretty dang proud.  Thanks especially to my Dad for buying into the guilt -- the other, other white meat.  It's what's for dinner!  HA!  But, we really appreciate the very generous contributions to a cause that is pretty important to us! 

I'm ready for another nap!

Epic Fail. Let It Be Our Last

wow, my pleads for funds for the american heart association flopped.  I even twittered a request were met with a thud.  I thought J. Lee would've whipped out the checkbook, but no.  Nothing.  Nada.  Does anyone even read about our Bean anymore?  Does her repaired heart mean nothing?!  Are times so dire that a mere $10. can't be parted with?  Whatevah... it's not like I'm floating the checks out to every cause either - but still, this is our Bean.  Hey, if you'd rather contribute directly to the Bean... by all means ...

My kid not only likes to take off her pants, but has learned out to remove her diaper.  Can you say, "T-R-E-A-T?!"  Yeah, it's a milestone, I'm sure.

This week has been busy.  Today we had our Speech (feeding) appointment, tomorrow we have OT and Thursday we're going in for an ultrasound to check our Bean's kidneys - part of the "Bladder Reflux - let's hope she's outgrown it" - research.

My kid just crawled across the floor, diaperless.  Excuse me.

*insert on-hold music here.*

Anyhow...

We're planning Andi's 2nd birthday blowout, which will probably cost us more than her last hospitalization.  If you didn't get an invite, I apologize.  Like last year, we tried to keep it small, but ding-dang - our list grew again this year... and hell's bell's - it's going to be a massive shin-dig!!!  I'm actually really looking forward to it and am starting the prep next week.  The most exciting part is not only is Ginga coming, but she's bringing Poppa B with her!!!  Nothing gets my house cleaner than company coming!  Thank goodness for that because our dust bunnies just had babies!!

The weather has turned nice all of a sudden, and I only hope it will continue through her party.  Last year it was nice and sunny, and then, like clockwork while all the food was on the grill ... complete squall.  Dumping rain.  Let's hope that this year is a little less wet, and even more fun.

Well, the Bean is trying to type her two cents and it's rather frightening what she might want to say...  so, I'll close with a 'Thanks For Reading!'

Portland Heart Walk

A week from tomorrow, Andi and I will be participating in this years Portland Heart Walk.  We are walking as part of the Doernbecher Children's Hospital team - whom successfully repaired Andi's complex heart defect.  We walk to celebrate the scariest of the six surgeries she's had so far.  We walk to stand among others effected by heart defects and heart disease.  Most importantly, we walk and fund raise for this cause because we hope that in the future, other families won't be blown away learning that their newborn baby has not just one hole, but two, plus needs a valve reconstruction, -- and needs a rather complicated heart surgery down the road.  No one should have to see the aftermath of heart surgery on your newborn.  The main surgery scar, the drainage tubes, the pacing wires, the machines doing the work to keep her calm and relaxed, intubated, puffy, her skin still stained with iodine.  I've never posted pictures of Andi's surgery recoveries, because I didn't feel that it needed to be shared.  I also have wanted to spare the full disclosure of what it's been like.  I tell, but don't show. 

Future society should not have us cutting open babies to "fix" things.  We should and will be more advanced than we are today.  So, it with this premise, that I again ask you to open your wallets, whip out those credit cards and give some bucks in honor of Andi & her thankfully repaired heart. Give to the future and the hope that our society will medically advance even further, faster. 

Thanks!

http://portlandheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=481883&supid=355228074

Never Wake A Sleeping Bean?

It's 10:30 a.m., and I still have a Bean asleep on the couch. 

I moved her upstairs with me at 8 a.m., and here she is still sleeping.  They say, 'never wake a sleeping baby', but this is a bit much!  We're a full 1.5 hours behind on her feeding schedule already (I don't like to feed her when she's sleeping...seems to promote reflux to fill a belly that's laying down & at rest!) 

Yesterday, we meet with the KP Speech Therapist - with whom we really work on feeding.  She outlined the goals she'd like to see Andi accomplish in the next three months.  First goal is she would like Andi to be eating 1/4 of her feeds orally within the next few months.  She'd like Andi to start learning & using more verbs, and putting 2-3 words together. 

I also called the ENT surgery scheduler again yesterday to see where we are with getting Andi's surgery scheduled.  Last week, my phone call was returned to let me know that the scheduler was out and they would look into the availability and get back to me in a few days.  That was SO last week.  Annoyed.  Even our broken Congress moves faster than this! 

Last week, I told our OT how I noticed that Andi would not cross the threshold into the next room.  That is no longer the situation, as Andi has figured out that she can crawl between rooms and has become more mobile.  Yesterday, she crawled from our usual spot through the kitchen and into her bedroom.  When I grabbed the camera, she had stood up and was trying to grab for a packet of pocket kleenex.

In addition to that milestone, Andi found herself some fun playing in the kitchen drawers.  Now if she would only learn to cook!!!  She's good at sitting up when she has something to hold onto or brace herself with... otherwise, she's a bit wobbly. 

Lastly, Andi likes to sit in chairs or on the couch like a big girl now.  This weekend, I snapped these pictures of Andi in the rocking chairs on the front porch. 

...Yes, the sun actually showed itself here in Portland. Amazing.

Alright, they say never wake a sleeping Bean, but I'm only giving her 15 more minutes of this!  Gotta feed a Bean!

Sedated Echo Results

It's been a very long day.  It's tough to get all our stuff together and get out the door as is, but when it's an early morning appointment - it makes for a very long day.  We sat in some stupid rush hour traffic, that turned out to be nothing more than a stall or accident blocking a part of the road - backing us up for a full 20 minutes. ANNOYING.  We arrived at Doernbecher's with time to grab a Starbuck's at probably the most profitable Starbuck's ever -- and surprisingly, there wasn't much of a line.  Andi was praised a few times for being so cute, but when a lady commented to others 'isn't she beautiful?' I had to chime in with a hair toss and grab that attention, 'why yes, I am beautiful, aren't I?'  After starting to say it, I wish I didn't -- the editor feature apparently doesn't work that early in the morning.  Oops.  I couldn't even look them in the eye when I joked and laughed at my dumbassness.  Yes, that's a word.  Embarrassed, we shuffled away - only to have two members of the audience follow us onto the elevator.  I think I did one of those shuffle your feet dances and whistled a happy tune, while I stared at my watch a few times...  It's essentially the equivalent of rotating blond hair around the finger.  Der-de-der-der-der!  Doh.  I quickly got off that elevator and found peace in a new audience.  Anonymous.  Yes, that's better.

We went for the sedated echo.  They basically gave her a bit of Valium through the g-tube, well, I did... and flushed it in.  Ten minutes later, Miss Stone was in the house.  Mellow and stoney-eyed...she was relaxed.  She did great, and endured the echo like a pro.  It's essentially an ultrasound of your heart.  After the echo, we got dressed and went back to Starbuck's for a refill of the ol' coffee.  I pushed some blenderized diet through the g-tube and then we went and waited to meet with our cardiologist.  First, we prefunked with the cardiology resident, that did the catch-up on all things Bean from the past year.  That was fun.  I heard myself say, 'sorry for the unload, but...'  She quickly added, 'no, that's fine - you guys have been busy.'  I think I threw in something about her only getting the highlights too.  After awhile longer, our cardiologist came in.  This cardiologist is the one who did a fetal echo twice on us.  Once at 20 weeks, when we were checking everything to gather data on Andi, as the ultrasound showed some abnormalities.  He said if we kept the baby, which we did based on the variety of tests and conclusions that were drawn by the Dr's and genetic counselor - that we were to come back at 26 weeks, so he could see her when she was a bit bigger.  We did and he at that point said he though he saw a pin-sized hole in her heart, but 80% of those close up by the time the kid was born.  Then we saw him since she was born.  He was the one that explained that not only did she have one hole, she had two ("Bonus!") and a valve issue - she had one large valve that needed to be turned into two.  We worked with him on medicine balances (sildenifil (viagra) and Lasix)... which was quite the undertaking as it was a tough balance.  Too wet (lungs) and she'd have trouble breathing, too dry (lungs) and she was dehydrated.  Although it seems like a long time ago, and some distant nightmare - it really wasn't that long ago.  In any case, he's know her since before she was born - so he was pleased to see her progress.  Her heart is good.  She still has some leaky valve issues - but there's no pulmonary hypertension or anything like that.  We updated the dose of Enalipril (lowers blood pressure to help ensure the blood in the heart can travel upward like it is supposed to), to adjust to her current weight. We're to see him again in a year.

So, it's not as glorious as I was hoping for - I was hoping to get off the medicine altogether.  But it's better than any bad news we could have heard.  So, we went to refill our prescription and have been trying to catch up on things, after fleeing the hospital with glee.  Andi slept as soon as we left, and stayed asleep the entire trip to the Kaiser Pharmacy.  It's been a long day.

Pebble In The Wheel

It's been decided that the KP ENT will do the surgery.  We're awaiting the scheduler to return my call to decide when.  This should be interesting since Daddy Bean is now facing two traveling trips in the next few weeks.  Then we have Andi's birthday coming up at the end of the month.  Stressed.

Tomorrow, we have our weekly OT appointment with our quarterly speech consult.

Early Thursday, we're due up at the hospital to have Andi's yearly sedated echo, and consult with her cardiologist. 

It's a busy time for us.

A Brand New Day

Today is a brand new day.  A day to start a new way of doing things.  It's push time.  Starting today, we are pushing the oral feeds, hard. So far today, she's had mashed banana, applesauce, mashed potato salad, yogurt, ice cream, and the latest, greatest, freeze dried strawberries and bananas.  I have Andi holding the piece of fruit and feeding herself, or just handling the food. It's a start. An experience.  After awhile, I will top off her "feed" with 2 syringes of blenderized food pushed through the g-tube.  I am hoping to quickly increase her oral intake and decrease her g-tube dependency.  I figure if I can push on the signs and verbalization, I should really start pushing on the other two areas she needs to focus:  oral feeds and walking independently.  So, between the feeds, the gait trainer, and the exercise ball, we should whip this little bean into shape a bit quicker. 

Normally, Andi would get three syringes of blenderized diet via g-tube.  One syringe is 60 ml.  So, 180 ml, which based on the b.d. calculations, she's getting a little more than 180 calories per 180 ml of food.  She probably won't initially take 60 calories by mouth at first, but, as she strengthens both her swallow, timing and desire - I think, no, I know she will take off. 

The tough thing about CHARGE Syndrome, is that it isn't just one battle.  It would be one thing if she only had to deal with hearing issues.  With CHARGE, it's a multitude of obstacles to overcome.  Andi's hearing, feeding, and balance issues are keeping "development delay" an everyday obstacle we work to overcome. 

I was watching her sleep this past week, because honestly, she's been sleeping next to me at night lately.  She seriously breathes like she's running a marathon.  I wonder if a breathe right strip would help.  I don't see her allowing it to stay on, but, I'm trying to think of things that the Dr's don't - which, sorry - is a lot.

Hopefully, the impending surgery will alleviate the work her body does when it's supposed to be resting!  Still waiting on that verdict, and timeline. 

In the meantime, she EATS!  It's a brand new day.

Good News -&- Bad News

"Gabba!" she says as the show comes to its conclusion. "All Done!" she repeats a few times to make sure I know it's done.  'ba gabba!' and some rumblings... I hit a few buttons to put on another episode.  Andi enjoys this show, Yo Gabba Gabba.  It uses music, bright colors and some interesting characters to teach kids a variety of things like sharing or basic manners. It's pretty cool, although, I find myself singing the songs often - which is rather annoying.  As we come to a close on another long week, we have good news and bad news to report.  First, the good news.

Andi saw the audiologist team for more hearing tests.  This time, we tested her unaided and she again, blew their hair back with her improved results.  They reprogrammed her hearing aid and essentially, 'turned it down' some more.  Yippie! This is especially impressive considering she's getting over that nasty cold, that has a bit of fluid in her ears.  The other piece of good news is that a second call to Kaiser has confirmed that the plan we're on DOES cover hearing aids for children, up to $4000. or 20%.  I still don't know what that means, but, it has to be better than the $660. we were expecting to have to whip out of pocket because the first Kaiser representative I spoke with said we weren't covered. So, this is great news, because I was fighting the urge to really go off about how messed up it is that her hearing aid wasn't covered.  We recently added secondary coverage through Daddy Bean's work, in the hope that it will help us with the many co-pays that add up quickly.  So, it is our hope that between the two, we won't be standing out on the highway on-ramp with a cardboard sign begging for spare change.  Can you imagine that sign?  'MEDICAL BILLS SUCK.  Donate!'

Well, now for the bad news.  The ENT, who looked about 20 years old, agreed with the original diagnosis -- Andi's tonsils should come out, and possibly her adenoids or a part of them.  He said those two things, coupled with her small nose/air passageway, would most likely be the cause of her work-at-sleep, and sleep apnea.  I asked for the surgeon at the hospital to do it, as was recommended originally.  He luckily hasn't grown an ego, and was rather cool about it.  He put in the referral, but wasn't sure if it would go through, as Kaiser don't want to do referrals, if someone in-house can do the same job.  Understand it, but, in six surgeries, the one and only that was done by the KP surgeon, didn't work out too great. So, sadly, I have a negative image in my head of having the KP people do it.  That's rather lame of me to lump them all into this negative category, but, sorry... I'm the one that had to deal with the leaky g-tube for 1 year and 4 months.  I'm the one that had to deal with the multiple appointments about the same problem.  Had to deal with all the times we dealt with the broken down, raw skin around the leaky site, where the stomach acid burning the skin.  I mean, can you honestly blame me for being reluctant about anything?  Just honor me, honor the Bean and get out of our way!

I can only hope that this surgery, surgery #7, will resolve the work she does at night & sleep apnea, which I believe is the reason she struggles to put on more weight.  It's like she's doing a zumba class at night, all night long.  Can we stop at lucky #7, please?!? 

We're waiting to hear who is going to do the surgery, and then we'll be able to work with their scheduler to find out when we can get in.  I'm hoping it's soon, as Daddy Bean has to travel for work this next month, and Andi Bean's 2nd birthday is only one month away. 

Well, one more piece of good news before I wrap this up, Andi Bean is blowing away the peeps she works with with her command of 80 signs, and quite a few words.  She's really absorbing them all like a sponge.  I asked her today if she knew the sign for "wait!"  She's seen it before.  She sat and thought about it for awhile, and then she put her fingers out to sign 'wait.'  I couldn't help but laugh and praise her.  She's so amazing!

Signing Time: 74 Signs & Counting

http://www.youtube.com/watch?v=fkXoMz9XJ90&feature=youtu.be

So, I finally broke down and made a spreadsheet of the signs Andi knows. Our OT was at the house this week for the 6 month goal review and we estimated Andi was at 40 signs. Uhm, no. She's at 74, and counting. Here's a very long video of Signing Quiz #3, which is quickly becoming a wild Friday night tradition.

ER Visit -- good times!

Andi has come down with a cold, but this one has been a bit tougher than the others.  Andi spent the day working at breathing, coughing and unable to really catch her breath.  She's been extremely clingy, and sleeping for only short periods of time.  We called her pediatrician and he said it would be best to have her checked out.  They did an RSV swab, a chest x-ray, and a nebulizer treatment with blow-by oxygen.  Her coughing really subsided once we did that treatment, but now that she's home and has been sleeping this past 45 minutes, the coughing has returned.  They sent us home with a neb inhaler, to be used Hopefully, we can all get some sleep tonight, as we're all beyond tired.

Videos & Pictures!

Here are a few recent videos and pictures to share:

Signing Time #2

"More... What?"

Brushing Teeth!

Ginga Jr.-

ENT Scheduled

Our pediatrician called and left a voicemail Thursday.  He was working up at the hospital that night, and said to page him when I got the message.  I got it the next day...oops!  I hate the phone, and tend to ignore it.  When he called, we spoke about the KP ENT -vs- the hospital ENT and he said it hasn't yet been determined that she needs those tonsils out.  He said that was one opinion.  And basically, after a bit of song and dance, and sorry ... the company line, I lost the request to skip the KP ENT even though I reiterated it a "colossal waste of my time."  My argument did not fall on deaf ears, but, I gotta go through the system.  LAME!  In any case, we have an appointment with a specific KP ENT at the end of the month.  This ENT works out in B.F.E., a.k.a. 15 miles away- one way.  Luckily, our appointment is after a hearing test, so we'll already be halfway out there.  TREAT.  If it is determined that we need to go to the hospital ENT, I wish I could send KP a bill for my wasted time, energy and gas.  Oh well.  We'll see what happens.  Ultimately, the most important thing is Andi and her well-being and everything else doesn't matter.  It shouldn't anyway.

I played a bit with the design of the blog and voila! it's changed.  I left the "three Bean salad" photo header though... those are just too cute to replace.  Seems like it was yesterday, but, it was so last year!  Never want to forget how far we've come though.  So, with that being said, they stay!

Make That 18.5 lbs

Beano weighed in today at 18 1/2 lbs at feeding clinic.  Everything else is still the same. They were thrilled with her progress, although, they would like Andi to start getting regular speech visits through Early Intervention.  Hey, whatever helps the Bean.

Lastly, I got a call today from the KP ENT scheduler.  I'm about to stick my foot up some KP ... anyhow, I've re asked to see the Doernbecher ENT that would indeed do the surgery. Spare me the time, money and energy wasted on another fricken consult, puhlease!  *annoyed!*  I think my request was rather well reasoned with the kicker, 'Andi is already a multi-million dollar patient, this is not the time for KP to get thrifty.'  Fricken HMO's... Wait... fricken health care system.  IT'S BROKEN, PEOPLE!!!  You may not need it today, but trust me, one day you will be knee-deep like us and see what I'm talking about.  And if you saw how much is billed... yikes!!! 

In any case, we're awaiting to get in to see the ENT/surgeon and see what her recommendation will be.  Feeding clinic agreed with the swallow study lady, Nancy, that Andi's tonsils have got to go.  One night stay at hospital = $300., not to mention all the out-of-pocket co-pays we haven't yet touched for the year - probably $500.  *insert string of overused cuss words here!*  However, I will not stress about something that hasn't yet been even confirmed to be happening.  *Bring back the happy dance.*

Hey, I've got an 18.5 pounder... heading in the right direction.  We went to Costco again last night to pick up some gift cards and found this on an endcap:



I love the 'WTF?' expression.  She's still not getting the massive teddy bear ... our house isn't large enough to house that beast!  We kept the Bean and left the bear.  Although we did practice the sign for 'bear'!  There's always a lesson, right?

Beating My Head Against A Wall

Some days, I wonder why I even bother getting out of bed. Days like today have me beating my head against a wall, taken back, and really frustrated with disappointment.  This morning started with that rather emotion-stirring drive up the hill to the hospital.  This visit is to do a swallow study, #4 or 5, I lost track. However, you know you're there too much when you recognize everyone, especially Tom the radiologist, whom has been there for many tests from the start. After the swallow study, while we were reviewing the videos, the next team was setting up for their swallow study, and of course, we recognized all of them too.  "Hi Steve!"  I wish I was exaggerating, but, I'm not.

Andi's swallow study didn't go as well as I would have liked.  However, today's exam showed that Andi's tonsils were large, and almost an obstruction.  She asked if Andi snored.  "Oh y-e-a-h she does!" I continued... 'she seems to work really hard while sleeping.'  The speech specialist said the large tonsils were probably to blame.  She asked if we'd ever discussed a sleep study, I said yes, it had been mentioned and we were just about to follow-up on that at feeding clinic on Thursday.  She said, I think you should go directly to ENT and have them look, as it would bypass the need for a sleep study...the tonsils, as she saw it, are to blame.  So, we came home and wrote our Dr. for a referral to see the ENT at the hospital who did her last choanal atresia revision and ear tubes last September.  We asked to bypass the whole KP (Kaiser Permanente) ENT system, and just stick with the hospital.  If there is a surgery to remove the tonsils, the hospital is the only one that will touch Andi, so why not keep us up there and consulting with those whom will be doing the work.  So, sitting around (this was yesterday, as I didn't finish the blog)... I kept thinking how that was the 4th or 5th swallow study.  I'm wondering if her tonsils were large on those previous studies and we just didn't see it, or if this is a new issue, maybe brought on by allergies or such?  This is something I will be asking tomorrow at feeding clinic.  In any case, the referral is in, and we're just awaiting the scheduluer to call us for a consult with the ENT.  Yea, another appointment!  But wait... it gets even BETTER!  Remember, this post is entitled, "Beating My Head Against A Wall!" Yesterday afternoon, we had our consult with a Urologist.  At 2 months old, Andi was admitted to the hospital with what turned out to be a UTI.  We had a VCUG (Tom did it!) and it was determined she has bladder reflux, grade 3.  (1 = mild, 5 = severe). Bladder reflux is when the muscle that controls the tubes doesn't squeeze tight and it allows urine to go upward, and shoot from the bladder into the kidneys.  It's generally considered muscle weakness. The easiest, most effective way at managing this and preventing UTI's - which can lead to scarring in the kidneys, is a prophylactic or as we know it, an antibiotic.  Andi has been on a low dose antibiotic (amoxicillan) since August 2010. Initially, they told me that kids tend to outgrow the reflux (as the muscles grow and strengthen) and so, I asked our pediatrician to refer us to urology, so we can start that dialog to see if she's possibly outgrown her need for antibiotics.  As I've really outgrown the need to go to the pharmacy every two weeks!  This Dr., whom I will call Dr. P, (yes, I'm perpetually 12 years old), was rather on the ball.  He works clinic on the other side of town at Kaiser, but, he also works up at the hospital three times a week.  He said he wished our paths had crossed sooner, as he could've had our new VCUG prior to the swallow study, and had them all done on the same day.  In any case, we're doing a new VCUG and ultrasound to check her kidneys, her reflux, and he took her off amoxicillian, and put us on a new antibiotic.  He is going to save me a trip back out to B.F.E. and have our follow-up scheduled up at the hospital, in conjunction with the VCUG, which is mighty considerate.

I'm beating my head against the wall because it's a lot to deal with all these appointments, and our need to see specialists.  I try to keep everybody on the same page, and yet, I still feel like we still slip through the cracks in the medical system.  We are very versed in both the Kaiser and hospital personnel and systems, yet, those two systems don't work together in conjunction to spare us any oversight.  For example, the hospital system thinks Andi needs to get current on a lot of vaccinations, yet, we are current - but it's in the Kaiser system. Or when we go up to the hospital for something, we have to bring them current on all the appointments we've done at Kaiser.  Kaiser can look into the hospital system, but the hospital staff cannot look at the Kaiser system.  Well, unless a Kaiser physician on-site grants them temporary access to review a file or such. At some point, I would hope that these two systems would talk to one another, yet, my suspicion is that it is due to security issues on the Kaiser side.  For patients like us, whom are eight people deep on both sides, this lack of a complete visual on all things Andi flat out sucks. 

Lastly, Andi only weighed 17 lbs, 5.5 oz's, which is down.  I've given her Nutella and ice cream in between breakfast and lunch.  Hopefully, it will help.  But more so, I hope that we figure out what is causing her to work so hard sleeping, if it's the tonsils, bring on surgery #7... and let's allow her to at least hit 20 lbs by her birthday for crying out loud!!!  Hopefully we can get some answers and all the powers that be can align and let Andi thrive for a change.  This stagnate one step forward, two steps back is so frequent and overdone that might head might actually break through the wall.