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.