4th Birthday Photo Session

4th Birthday Photo Session

Thursday, November 14, 2013

CHARGE Through The Year - A 2014 Wall Calendar

A week and a half ago, while giving Andi a bath, I was struck with an idea -- a calendar featuring kids with CHARGE Syndrome to raise funds and awareness!  I quickly shot off a few emails to "friends-in-the-know" and asked for information.  After which, I was twirling my blond hair and realized, I'd better get some Mom's on board.  So, I private messaged the first 12 or so Mom's I could think of on Facebook, and sure enough, they all pretty-much jumped on board.  I researched, talked to a few more people, made some phone calls and before I knew it, CHARGE Through The Year 2014 Wall calendar was born!  Well, printed...

Cover Art Image

Interior Page, April

I put together a website (www.chargecalendar.com) where people can go buy the calendar using PayPal.  The calendar is $20., which includes shipping.  We have a Facebook page people can 'like!' and we're on Twitter!  The calendars should be here soon, next week - and I'll begin shipping all our orders out!  I really hope we can sell them all, and people enjoy them as much as I've enjoyed putting this project together.  Most of all, I hope people hang them in very public places where people can learn about CHARGE Syndrome, and see some of the gorgeous kids that are celebrated in the pages.  As I seem to keep saying lately, no parent whose child has a syndrome should ever have to hear from medical personnel, 'CHARGE Syndrome... what's that?!?'  It's my hope and ambition that through the course of many awareness campaigns, such as this calendar, future families will not have to hear such words uttered from the mouths of many. 

The holiday's are coming and I can't think of a better gift for people to have than the beautiful smiles contained inside this calendar!  If nothing else, Andi is Miss January!  So, buy one - buy a dozen... share the knowledge, share the smiles, and share this journey with me! 

Monday, August 26, 2013

Surgery #8: A New Set Of Ear Tubes & Independent Steppin'!

Last Friday, Andi checked into Doernbecher's Children's Hospital for surgery #8 -- a new set of ear tubes!  We met three anesthesia people that would be working on her, two nurses that would be in the room taking care of her, and just before 7:30, we met the ENT surgeon who would be performing this procedure.  I honestly think he's the sixth or seventh ENT Dr. we've worked with in the past three years.  The procedure didn't take long, and soon we were ushered back to the recovery area where Andi was not only awake, but extremely pissed off.  Anesthesia had warned us, as did the ENT, that although she would not be intubated for this one, most kids wake up super cranky from it.  It is believed to be because the procedure is so short, that they really don't get much rest, just disturbing irritation.  The ENT surgeon explained that all went well.  He was able to get a new set of blue tubes in place.  He cleaned out a lot of "gunk" out of her left (bad) ear, and removed a pocket of red blood cells that had gathered in her right ear.  I would likely see some bleeding out of that ear for a few days (which I did!).  All went well though.  Due to Andi's medical history, they decided to keep her for observation for an hour.  Yes, an hour.  I was expecting that we'd be admitted and staying the night.  Nope, just an hour.  Walking out of the joint as an outpatient was completely stellar!  Before that though, I had to sit with a very agitated Andi, and even the iPad wasn't working.  Surprisingly, the trick that worked to settle Andi down was singing songs.  The kid in the next bed, on the other side of the curtain, started singing along.  It was pretty cute.  She curled up in a little ball and we rocked for a good 1/2 hour or more together.  It was pretty sweet, and reminded me of the good side of our hospital stays, the cuddling time we spent together.  Later that day, after Andi woke from a nap, I was on the phone with Ginga.  Andi was standing with her back to the couch.  Next thing I saw her take two steps away from the couch toward the dog we were dog-sitting.  Her first two independent steps.  It was AWESOME!  I had asked her Dr. if her possible ear infection could possibly be causing her to fall more, 'no' he said.  Well, having her ears cleaned out not only made her hearing improve noticeably for the day, but her balance was the best its been.  She's eager to walk and we're continuing to try to work on it as much as possible.  Today, Andi started her second and final week of swim lessons.  She is paired with a teacher's aide whom can talk directly into her good ear and try to get her doing what the rest of the class is doing. Andi is definitely behind the rest of the group, but is slowly getting more comfortable in the water.  I see it in the bathtub too, she's getting more bold and exploratory in the tub.  It's pretty cool. We're going to sign her up for another batch of lessons in October in the indoor pool down the street.  We are confident that swimming will help her with her balance.  In addition to that, we have signed her up for her evaluation for hippotherapy.  I am hoping these people have magic powers that will entice her to get on the horse, because I have tried and failed twice to get her on a carousel horse.  We'll see.  If it helps her walk, however, it will be worth the cost. 

Lastly, today we met her two bus-drivers that will taking her to school and bringing her home.  This will free up four hours of my day, making my life a lot less complicated.  So, I look forward to this next chapter, although I can't help but stop to reflect that my little baby is growing up.

Monday, August 19, 2013

The Birthday Video - Revisited

I made this birthday video several months ago using powerpoint.  I did not, however, realize at the time of its creation that it would not post to You Tube so I could share it with the word.  I mean, there are ways to get it up there, but given it's size - nope.  So, I spent a few hours the other night putting the images into a new program that is much more compatible with You Tube, but the length of the video also grew.  So, it's ridiculously long - but a good snapshot of our first two years... leading up to her 3rd birthday!  Next year, I'll be smarter and just capture the highlights of the previous year.  Live and Learn.

Alas, here is Andi's Birthday Video:


Thursday, August 1, 2013

Arizona and The CHARGE Syndrome Conference

This past week, we flew down to Arizona to attend the CHARGE Syndrome Conference.  It was held in Scottsdale at the incredible Fairmont Scottsdale Princess.  We got ourselves some pretty cheap airline tickets on Allegiant Air.  The only kicker, was it flew out of Eugene, OR and not PDX, which is only a few miles down the road.  It was nearly 1/2 the cost of tickets out of PDX, so, we figured we could handle driving the 1.5 - 2 hours down to Eugene.  So, we got up before the Rooster and hit the road at 6 a.m.  We were pretty anxious about the weight of our bags.  One of the stipulations of the cheap airfare is having to pay for your bags. If you check your bag, it can't be over 40 lbs., otherwise the price doubles.  If you carry on, that bag can't be more than 25 or 30 lbs. (can't remember!) Therefore, we weighed and weighed our bags repeatedly, so we weren't met with surprise at the airport.  So, Daddy Bean checked a suitcase for $35. and I carried on a rolling suitcase for $20.   So, we drove down to Eugene, got our bag & car-seat checked and headed through TSA without much issue.  Our flight took off on-time and we landed at the Mesa Gateway Airport (small regional airport east of Phoenix.)  We got our gate-checked stroller and got to the baggage claim where it was a mad-house full of people.  It was nearly impossible to tell what flight was unloaded onto one of the two baggage rotators.  I thought Montgomery Regional Airport was slow.  Let me just say this experience made Montgomery look like rock-stars.  It took at least an hour (Daddy Bean will tell you it took longer!) to get our bag & car-seat.  Meanwhile, I got our rental car.  We stayed our first three nights at a hotel I got a deal on through Hotwire.  The $41./night ($55. with taxes) was so much more digestible than a full week at $109. ($125. with taxes).  Turns out our first hotel was seriously 'next door' to the Fairmont.  It was a huge suite with dining room, full kitchen, TV room and one-bedroom with walk-in closet and full bathroom.  It had two patios as well.  For $55. a night, that was well worth it, not to mention the four different pools they have to choose from... highly recommend them. (Zona Hotel & Suites) We got to our hotel and promptly went shopping for some groceries.  We planned on making our own breakfast, lunches, snacks and beverages in order to keep our expenses down.  Scottsdale is ridiculously overpriced, as was our shopping experience at Safeway.  But in the end, it saved us lots of time and money being able to feed ourselves without much issue.  My oldest friend just happened to be in Phoenix for work, so we went out to dinner with her the first night we were there.  Super fun.  The next day, we met up with Cory's uncle and aunt.  We went on a sightseeing adventure with them up to Peyson, AZ to enjoy some cooler weather.  We all rode in their car and had a blast catching up and enjoying the sights.  It was a lot of fun, a lot of laughs.  We spent the entire day with them, it was a wonderful treat!  The next day, we left our hotel at 6 a.m. for my bucket list destination:  The Grand Canyon.  When I moved from Atlanta to Portland, on the drive over, we set off on a detour to see it, but never made it.  It's always bothered me that I hadn't seen it (as an adult) -- so we had to go!  It was a four-hour drive (to the south rim) and it was beautiful. 



We stayed for two hours, eating our picnic lunch, then fleeing for Sedona -- another destination we just had to see!  Loved Sedona and would love to spend a lot more time there.  Andi enjoyed the chocolate shop.

We had dinner there (pizza) and headed back to Scottsdale.  We drove on the edge and through some thunder storms.  The view was spectacular.  I don't remember what time we got back to the hotel, but it was a very long day. 

The next day we checked-out of our hotel and moved over to the Fairmont.  Luckily, a room was ready and they put us overlooking the golf course.  Apparently, this golf course is home to the Waste Management Golf Tournament.  I'm not familiar with it, but, given what I pay for garbage pick-up... I imagine it's a top-dollar event.

We did some sight-seeing in Old Scottsdale and had some pool time before it was time to make our grand debut at the conference reception!  Of course, I called in a "mingler", little did I know they'd have a bunch of food there and it would be massive.  I was surprised and a bit overwhelmed.  Andi wore her Tutu we picked up at the Mississippi Street Fair.  We knew it would be perfect to showcase her personality in a big room full of people.  It made quite the splash and many stopped to admire it. 
We left the party a bit early because we had already planned to go to dinner at some Mexican restaurant Daddy Bean likes in Old Scottsdale.  It was well, well worth it!!!  We feasted and then returned to the hotel to crash.
We were up early the next morning to get ready for our first official day of conference.  Breakfast was served as early as 7 a.m., and in true Miller fashion, we were there shortly after 7.  We wanted to make sure we had plenty of time to eat, get Andi to camp, and get back to our seats in time for the start.  Thank goodness the conference served pretty decent coffee, as that is one of my only complaints about traveling...finding good coffee.  So we sat down and ate, and finished as others had been coming in to eat as well.  Andi decided she wanted to walk around -- holding my hands (her current favorite method to get around).  She happened upon this table of three or four women and decided to climb up into a chair where she said chorus of "hi!"  repeatedly, a few "how are you?!" and then spontaneously broke out singing a lengthy version of 'Old MacDonald!'  They ladies just laughed and loved the entertainment.
We joked about putting out a can on the street and getting her performances to make us money, but right now, that's a little too Honey Boo-Boo for my liking. In any case, after a very long entertainment session and more walking around, we marched Andi down to camp.  While we attend conference sessions, Andi gets to go to camp.  there are two camps and it just depends on how much supervision your camper needs.  I signed Andi up for one, but with more discussion we switched her to the other.  After lunch, they switched her to the original camp with more one-on-one supervision - as Andi was scratching other kids and the babysitter.  Oops.  I think that has to do with over stimulation.  It's a problem and according to one of the sessions Daddy Bean attended, it's very much a trait of CHARGE.  In any case, the quieter camp worked much better for her and she was deemed an angel!  In the mid-afternoon, we took her out of camp to attend a balance-workshop with us.  It turned out to be lead by a lady whose session I attended earlier.  It was a bunch of tools (exercise balls, stepping stones, hula hoops to jump across) that kids with balance issues could do at home to work on improving their balance.  Honestly, we didn't get that much out of it, although if I can, I will try to get Andi on our exercise ball more often.  There were more stations of various things at this session, i.e. genetics and general information, but at this point we were all a little fried.  We went back to the room where Daddy Bean ended up taking Andi to have dinner with more local family!  I, however, had plans to meet up with other Mom's for drinks at the outdoor bar.  I'd been looking forward to hanging out with these incredible ladies more than anything!  I freshened up and went back to the ballroom for dinner.  One great feature of conference was that all our meals were included.  I can't even imagine the cost of feeding all these people, but considering how many were in attendance (950+), the food was really dang good and the people working to make it all happen did an amazing job.  I sat and talked to this wonderful couple from Utah throughout dinner.  I went on and on about the benefits of Blenderized Diet.  We sat and talked so long, we were some of the last few people to leave the ballroom. I totally lost track of time.  So, I went to the outdoor bar and ordered a drink.  It was a vodka drink with freshly mashed raspberries, some lime and ginger.  I told him to hold the ginger - because I don't tend to care for it.  I put up a $20. bill, and I kid you not... I got $3. and some change back.  YIKES!!!  As I sat there, I got sucked into conversation with a fellow patron of the bar.  This kept me longer from the group of ladies amassing at the big long couches near the bar.  When I finally was able to steal away, I walked up to the large group of women and loudly proclaimed in perfect Momma Bean form, "Ladies, I have arrived!"  It was a blur of conversations and an instant sense of hanging with people I've known for years.  All our kids have brought us together, and it was such a wonderful opportunity to spend time with these amazing Mom's. 
Sunday, I was dragging super-tired.  The ladies at the table the morning before asked me when Andi was going to come over and perform for them while I was getting us some coffee.  I held up the coffee mugs and said, 'after I get her some coffee first!'  We were all much less perky that second morning.  It was pretty evident.  Even Andi was wiped out and unusually quiet.  We ate and then scampered her off to camp.  We went to our individual seminars, again in a divide-and-conquer plan of attack.  On Sunday, I attended two seminars that really impacted me.  Bone Health and Endocrine Problems with CHARGE.  Those really affected me as it is frightening how many CHARGErs have osteoporosis and need hormones to help force puberty.  It was rather eye opening, educational, and a bit sad.
The whole day was exhausting.  So, between our last session and dinner we went to the pool for a bit.  There were several pools at this hotel.  One was a wonderful pool with two very large slides.  It also had a super shallow end where Andi could easily sit in the water, of course it was a struggle to get her to wear her hat.  After some pool time, we freshened up.  Daddy Bean went to join other Dads for a Dad's get-together at that same outdoor bar!  Andi and I dressed for dinner and met Daddy Bean there for a meal.  They had a festival going on called 'CHARGE-a-poloza'  They had a silent auction, prizes, games, face-painting & a DJ.  After we ate, Andi wanted to cut-up on the dance floor with the other kids. 

She seemed to have a blast.  We left the festivities rather early that night.  In addition to the party going on at conference, the hotel had entertainment planned as well.  At one pool they had a "Glow-Party!" There were neon glow-in-the-dark hula hoops, a DJ and it was just a fun evening in the pool.  At the other pool, they were showing a movie.  People just stood or laid on a floaty in the pool and watched a movie on a huge screen behind the pool.  It was pretty dang awesome.  At 9 p.m., however, they interrupted the movie for the fireworks display over the lagoon. So, we stood in the pool and watched fireworks.  It was pretty spectacular!
For the last day of conference, a half-day, we didn't have any seminars, but various awards and a panel of young adults with CHARGE speak to the crowd.  The panel of young adults was very moving, very inspirational and very emotional.  These kids gave very honest, detailed summaries of their lives thus far.  The first "kid" to speak was funny.  I've since befriended him on Facebook because he is so incredibly wonderful.  He speaks four languages, has massive amounts of education and teaches rock climbing.  He had me laughing, had me crying, had me nodding my head in agreement.  The other kids were just as amazing, but the girls spoke of bullying they'd encountered during younger years and one admitted out lonely her life was and how hard she had it due to that.  As a parent, I'm already worried about how other kids will be to Andi.  I hope that Andi keeps her sense of humor and quick wit with her as she gets older, as I think that will help. But I fear if anyone were to speak ill to her or of her, that her Dad and I will end up in jail for harming that person, bad.  All these kids were amazing and it was wonderful to hear them speak.  When they were done and conference concluded, we switched gears and after lunch, quickly met families staying the night at the pool again.  We hung out down there for an hour or two.  Then we got cleaned up and met all the AZ family for one last dinner.  Andi really enjoyed meeting and hanging out with all the great-Aunts and great-uncle and second-cousins!  She took turns on each and every lap, enjoying the last of the time with them.
The next morning, we awoke at 4:30 and were out of the hotel at 5 for a drive back to Mesa to catch our flight home.  We flew back into Eugene and drove home to Portland.  Exhausted, we all were fried.
Along the way, there were two people that noticed Andi's heart surgery scar.  I conjured my reinvigorated purpose of educating others about CHARGE Syndrome, and told these people about CHARGE and Andi's level of affliction.  Although still tired from a whirlwind week, I have already begun outreach to other local CHARGE families, in attempt to organize a get-together with other families.  I have also decided to work hard on fundraising for CHARGE Syndrome.  On top of that, I still plan on finishing my book in all my copious free time! HAHHAHAHAA!!!  
Conference was very inspiring, a lot of fun to hang out with other families, and completely exhausting.  Now it's a time for action, and to take what I've learned and start educating others.

Monday, July 15, 2013

When PE meant 'Physical Education' and a Hot Glue Gun Was Just For Crafty People

Ah, a new set of 'PE Tubes' are being scheduled to be put in our Miss Andi Bean.  Yep, her second set.  Surgery #8.  It's the most common surgery performed, but, it's still a surgery, ..and anesthesia, ...and another hospital bill.  Just slap me with a hot glue gun to the eyeball, tongue, and in between toes.  We currently have it scheduled for 8/14, but I've since realized that date will not work because Daddy Bean will be in Atlanta for work.  He wants to be here.  He missed the last surgery due to work travel, and it really bothered him.  (He missed out on the horrid post-tonsillectomy breath, that still triggers the gag reflex just remembering it!) 

We have $936. left on our yearly deductible, plus a 20% co-pay for an overnight stay.  So, I'm waiting call back not only to reschedule, but to find out if they can give me an estimate of how much one night in the posh hipster kiddy hotel (why hey, yes, that is sarcasm) will run us.  ugh.

Today I was able to enjoy a few more phone calls about new insurance bills dating back to a service date of 2/16/12.  Yep, 1 year, five months ago.  Seriously.  See, last year, we had dual coverage, as we thought, hey... maybe that will help us save a few hundred bucks on all our co-pays and out-of-pocket's.  When you're chronically using your insurance, all that stuff really adds up!  So, we took on another insurance provider through Daddy Bean's work.  We thought we were being proactive, smart about expenses, and just plain good parents.  Yikes, Yikes, Yikes.  We were idiots.  It complicated everything and helped us, uhm, not at all.  In fact, it only made things more difficult. In any case, our main insurer paid the bill, then retracted their payment, now are submitting payment again, but still haven't sent it... it's one big giant cluster o' fun.  Absolutely ridiculous!  In the meantime, I get to make sure party A is talking to party B, and party C is kept in the loop.  Luckily for us Andi is no longer medically fragile.  If she was, I think phone calls like this would cause me to seriously snap, and I'd probably end up walking around with a hot glue gun ready to attack others' sensitive areas without notice.  I wish the insurance industry would really get their act together and not only make it cheaper for us to be covered, but simplify all this junk and not bother professional patients with any of this b.s.  The slogan would be a Nike-esque 'Just Do It... and don't bother me with the details.' 

This time next week, we'll be baking in Arizona.  I am concerned how Andi will do in the heat.  I know we'll run from air conditioned indoors to air conditioned car, but...    We've just emerged from being confined indoors due to the nine to ten months of rain we get here, and so now being confined indoors because it simply is way too hot to be outdoors is like being slapped in the face with a hot glue gun.  I am looking forward to getting out of town and meeting lots of people we consider friends, although we've never actually met.  It's going to be an overwhelming whirlwind of fun.  We're excited!!

Tuesday, July 9, 2013

Little Bumps o' Success!

Mentally getting ready for the CHARGE Syndrome conference coming up in two weeks.  Well, we leave on a Monday and return on a Monday - but that's because we're flying a no-name airline out of Eugene, OR and into a regional AZ airport.  Hey, it was considerable savings to us - so... we went for it.  The conference is really Friday - Sunday with what I call a "mingler" on Thursday night.  We've made this trip our big yearly 'vacation' and it has been grueling saving up for it after just paying off the stupid roof.  We've made some adjustments, but I think we're ready.

We just got the test results back from Andi's yearly ultrasound follow-up.  Last June, Andi had that "bladder deflux" procedure where they injected what became 'mounds' in her bladder to prevent the urine flowing upward (reflux) toward her kidneys.  The procedure worked.  The ultrasound showed that everything still looked great.  They want to do yearly urine tests and blood pressure, but if we continue to have no more UTI's, then we won't need to any more ultrasounds.  YEA!  Her Dr. said that if she's potty trained we can have her pee in a cup, otherwise, they will have to catheter her and she will not like it.  We haven't made much progress on the potty training.  She will sit on the potty but not "go!".  She will tell me "stinky" after she goes, but not before.  I haven't been super diligent in putting her in underwear and asking her every 20 minutes if she has to sit on the potty.  Who has time for that!?  Again, I maintain - there should be a potty training academy where you can send off your youngings in diapers, and they come home from camp in underwear, fully potty trained.  I know, I know... I can do g-tube switches, replacement, I can dose out med's including serious controlled substances, I can do TPN in a central line... but potty training seems a bit much!??!?!?  Yeah, okay.  Maybe it's just me being lazy and impatient.  I would like to forego the horrid expense of diapers though.  We got hooked on Pampers Swaddlers in the hospital and I can't seem to stop loving them.  They ain't cheap though!  Ugh!  So, potty training camp... surely someone offers it!?

This Friday, Andi goes to see the ENT Dr. again about the chronic ear infections. I think we're looking at getting a new set of tubes put in, but we'll see what he says.  Last audiology appt. they said the left ear looks very red.  Lately, I've been noticing her right (good) ear smelling like a dirty, wet belly button... so I can't imagine that's a good thing. 

Today, Andi started her summer session of preschool!  Today it was just her and her favorite classmate, Josiah.  I believe there will only be three of them this session, as the others seem to be taking the summer off.  Andi apparently is doing really well, although there was a little boy whose first day was today.  At the end of the school, I picked up Andi to find her and this new boy sitting for songs.  This little boy was so much more verbal than Andi.  It made me sad.  She's doing great, but to see another kid that is so much further ahead, is hard to swallow at times.  But, we'll keep plugging on and marching forward.  On another note, the teachers were all super stoked to see Andi walking in holding my hands this morning.  She is definitely getting stronger, even in these past three weeks.  She is eager to walk, most of the time.  Oh shoot, I just realized I haven't posted her video here! I have gotten so bad about regularly posting on her blog.  Here's evidence of our latest trick!  She's getting stronger everyday. 

Wednesday, July 3, 2013

Humbled Ramblings

There's much for us to be humbled by... as quite a few fellow CHARGErs are suffering recovery in a hospital.  All are fighting a serious recovery.  Each day lately, we've had a name on our 'begging for help' list.  See... I'm really NOT a religious person.  I am very conflicted on the whole 'higher power in the sky!" personna that I've been sold.  I don't necessarily believe in that.  I tread lightly though because I don't want to disrespect another's belief!  I encourage others faith... my theory is, 'whatever works for you!'... I do not judge nor discourage others......although many hold beliefs that are very different than mine.  That doesn't bother me.  I think the more energy, in any form, you can conjure for another, the better to receive.  For example, one of the first CHARGE kids I was ever witness to was Reuben.  Reuben just endured a simple 29th surgery that didn't go so simple, as his airway was compromised with a blockage and for five or six days, he was in ICU in critical condition.  This is the CHARGEr whom online blew me away and gave me so much hope, courage, and love.  Reuben has had a really rough go this week, but he was discharged today.  My heart is full of hope for a quick recovery, but these last few days have been grueling.  I have to keep in mind that several of our readers do not understand the extent of our experience, our reality.  It's our job to give a glimpse, so there's more understanding, more empathy, whether it is resolved out on the road letting someone in a daze drift into your lane without much thought, or whether its is someone at a party explaining their reality to you and you're overwhelmed by their situation.  (this has happened to me, often.)  It's all in all a reflection of the good in your heart.  If you have good in your heart, and you follow-through with that, then get your ass down to donate blood.  Get yourself involved with charities that actually benefit families like us (FYI - we've had NO help, other than a scholarship to attend the CHARGE onference!)    I'm sorry, but I haven't seen March Of Dimes around in my little world.  I haven't seen many charities, at all.  But then again, there are many that are worse off than me. 

In any case, we are humbled by those that are still struggling.  Although I am not religious, I actually prayed for Reuben and Kalob and send my good vibes to Kane and those other yougin's still struggling.  My heart, love and good vibes are being sent for each and every CHARGEr (and any kid) fighting the good fight, whether its a CHARGE affliction or any affliction.  There's nothing more worthwhile than a kid fighting any fight - whether it's a genetic condition, medical affliction or a bully.  We should all gather around and surround our young with love, strength, encouragement and faith - no matter the denomination.  They all need us, whether you know it or not.  And we're humbled by all of those that 'get it!'

Wednesday, June 19, 2013

Ear Infection, Round 2

Andi thought it would be fun to get up early this morning.  She cried and cried.  Normally, we let her cry it out and she usually calms herself, rolls over and goes back to sleep.  This morning, the cries got progressively more demanding.  So, I came up to her room, grabbed her out of her crib, (which instantly stopped the crying), and brought her downstairs to the bed.  Normally, she'll curl up with me and go back to sleep.  This morning, she wasn't doing that, so up before the crow we were.  She asked for water and shunned her chocolate milk, which left me asking, "really?!"  Normally, I give her the Ipad when she wakes and that entertains her through the grumps of waking up.  Well, the Ipad battery is dead and the charger is over at Grandma & Grandpa's house, to which we have yet to retrieve it.  So, without that, I put on an episode of Yo Gabba Gabba!  As long as YGG is on, or a Signing Time video, she was fine.  But she was easily distracted and whiny, often climbing off the couch, crawling or cruising over to me, and then demanding to be held.  After I put her back for the umpteenth time, she pointed to her left ear and cried.  Uh-Oh.  It was just after seven, so I placed the call. 

The foolish woman on the phone said that I should just have the advice nurse call me, and they can redo her antibiotic prescription over the phone & that way I won't have to bring her in when she's not feeling well.  I said, 'well, I'll have to bring her in regardless to pick up the script. But, okay.'  So, an hour later I was contacted by a Ped's nurse who knew who were are!  I knew they wouldn't in any way shape or form send Andi packing with a script without seeing her.  Not my girl.  So, we were to be seen two hours later.  An hour after that call was made, Andi was acting like her usual self again.  I got us out the door, and over to see a different pediatrician as our usual Dr. is on vacation.  The nurse we saw totally knew us, as she'd seen us in the past.  She too knew that Andi is Chani's (our pediatrician's nurse) favorite, and promptly told us that she'll be back 7/1 from maternity leave.  The Dr. came in and quickly confirmed what I believed to be true...the ear infection is back (if it ever truly left) and we'd need to get on a different antibiotic.  The funny thing is, we knew this pediatrician too, as she once shadowed our cardiologist up at the hospital.  It cracks me up how small this world seems at times.  Both the nurse and Dr. were blown away at how well Andi is doing.  Again, the sentiment I hear from professionals is wonderful, although a bit concerning that they didn't expect her to do so well.  Anyhow, we stopped at the burrito stand down the street on the way home because we were starving, and I didn't want to get home and have to make lunch.  At home, I sat Andi in her high chair.  I cut up her bean &  rice burrito and gave her some chips.  When she finished, I was checking emails on the computer when I stopped what I was doing, hearing a familiar sound.  I turned around to find this:

Least I didn't have to fight her to take a nap today!  Sadly, this occurred before I was able to give her the first dose of antibiotic.  Oops. 

Monday, June 10, 2013

The BE Charmer (yes, BE!)

The past several Monday's, we've gone to the gym so I can attend the evening boot camp class.  Each time, Andi has to use her walker on the sidewalk, through the doors, and past the check-in to the Kid's Club - where she plays with all her friends.  Her 'friends' are the adult women working there.  She loves them all.  In any case, the past several Monday's we've attended class, we are greeted at the door by the very large man I wrote about awhile ago.  By very large man, this man is obese.  He's probably the largest person I've ever spoken to.  He's usually completed his workout and is waiting by the front door for a ride from someone.  I've noticed he seems to be waiting for Andi though, expecting her, hoping to see her.  When he gets a glimpse of her coming, he seems to hop up and throw open the door, and encourages her to come on in.  It usually surprises Andi.  Today, like clockwork, he threw open the door with an exuberant 'Hello there!'  Today, Andi gave him a big smile and said, 'hi!'   Again, this man stands at the door, holding it open for several minutes waiting for her, encouraging her, and wearing the biggest smile she encounters.  (This is all in the most non-creepy sense of the description.)

I got Andi checked in and then headed over to the bathroom.  After which, I headed to one machine, as I had a few extra minutes before class started. I sat down at the machine, to hear a PA announcement for me to return to Kid's Club.  I walk in, afraid she's already causing trouble, but am told that Andi just needed a diaper change.  I ran out to my car to get her diaper bag and when I returned the large man was still sitting by the door waiting for his ride.  He stopped me and asked (respectfully) why Andi needed the walker, noting that I'd already told him she has balance issues.  I told him she has CHARGE Syndrome, what it is, and what that has meant for her.  In my opinion, he was dumbfounded, impressed, and humbled all in one.  He went on to tell me that he was having a really bad day, but he saw Andi and she just made his day so much better.  He said that she really has touched him.  Knowing her story seemed to give him better perspective as well.  He acknowledged that what she's been through could make his bad day seem so petty.  I couldn't help smile and feel so totally impacted as well. She's helping others just by the mere fight and light within her.  She's a charmer.

At the end of pre-school today, Andi's teacher said she had another great day and that she was so smart.  She asked, 'do you know how smart she is?'  I just laughed, nodded and said 'yes!'  I told Andi's pediatrician about that later in the day and he said, 'was there ever any question?' and I said, 'no, but it's really nice to have others, especially professionals, notice and acknowledge what we already believe to be true.'

So, lastly, Andi went to see her pediatrician today.  Last Wednesday, we ended up at Urgent Care, as Andi pointed to her left (bad) ear and started crying.  It wasn't an 'I'm tired and grumpy cry!'  It was different, and different has always meant some sort of trouble.  It was deemed she had a bilateral ear infection, but that's not why we went to see her Dr. today.  Today was just her yearly 'wellness check' - standard operating procedure.  For people like us though, they see us more often and know us better than the S.O.P.  In fact, they give you a questionnaire to fill out prior to the appointment.  The first question asked if the child has had any surgeries or hospitalizations since the last appointment.  I asked the nurse, from this time last year or since two months ago when we were here last!?   See, we don't fit the usual mold.  In any case, Andi's weight is slowly creeping up, 23 lbs, 13 oz's.  She's 33" long, which is stagnated.  I pointed out that the 'R' is CHARGE stands for 'restriction of growth.'  I mentioned to him that apparently they sometimes give HGH to kids with CHARGE.  So, he put in a referral for us to go see Endocrinology, whom specialize in growth hormones, thyroid, reproductive hormones, & adrenal gland.  Hate to be taking on another specialist, but this is important.  We also got a referral to see the eye Dr. again - as she wanted to see Andi when she was three. I don't even remember when we saw her last, but imagine it was well before her first birthday.   Other than that, her pediatrician was really excited about Andi, especially how chatty she is now.  He said it nearly brings tears to his eyes to see her and how well she's doing.  Andi really does impact those around her, and it's amazing to witness. It's as if she's a BE Charmer.  Not a bee charmer, but a BE charmer - as she seems to make those around her want to BE better, BE more, BE healthier.  Yep, she's a BE charmer.

Wednesday, May 29, 2013

Andi Bean Turns 3!!!

Yesterday, Andi enjoyed her 3rd birthday!  The morning started with several helium balloons decorating our living room, presents galore on the floor, and some extra attention from her visiting uncle Chris.  We had a great day that included a trip to the local aquarium and dinner out on the town, where Andi ate like a champ.  It was a fun day full of laughter and moments of pausing to appreciate how far we've come in three years.

Over the past several weeks, I've worked on a Powerpoint presentation capturing a glimpse of the past three years in photos.  the slide show is set to music and it is, like life itself at time, extremely long.  Had I realized how difficult it would be to get it online, I would've chosen a different program.  Apparently, I have to convert it to a video file to get it up on You Tube, and then there's the whole size issue on top of that... basically, I'm sharing it through MailBigFile, which I renewed my subscription to - so if you haven't seen it and want to, shoot me a message with an email address, and I'll get an invitation to download it to you.  

Thursday, May 16, 2013


Andi's first week at preschool has been a tremendous success! 
The preschooler's breakfast of champions!

Preschool dancing with Bunny!

First ride to school!

Arriving in the classroom!

First day pick-up!

First day celebratory dinner:  Tom's Pizza, which she devoured.

"pizza! yum-yum-yum!!!"

She has seamlessly transitioned into the school, impressing the teachers and therapists.  Upon leaving school after her first day, we recorded this: 

So, her new words this week are "school", "backpack" and "Hi. How are you?!"  She's very friendly and outgoing, although not everyone understands her words.  She is very small compared to the other kids, but pretty happy and considerably well-adjusted.  Some of the other kids talk a lot, some don't talk at all.  They are all adorable in their own way.  One little boy actually dropped his teacher's hand and grabbed mine, as if to have me walk him out to the waiting bus. 

The teacher is pretty pleased with Andi's command of signs and words.  She said she has had a fairly easy time communicating with Andi, which is wonderful.  Andi's new PT is going to get her a different walker.  One that allows all four wheels to rotate, thus hopefully eliminating the steering problem we currently have.  As of now, someone needs to walk along side of her and correct the direction of the walker, as it pulls to the right.  The new walker will hopefully give her a little more independence. 

I'm trying to figure out where I can best spend my time while Andi is at school.  I've been trying to find a place I can set-up a mobile office, using their Wi-Fi.  I have tried two different Starbuck's and neither of those really worked for me.  Too small, too crowded, too loud, and dang it, their coffee just ain't all that great to me anymore.  Today, I left the overcrowded Starbuck's when there wasn't a place to sit and ended up sitting in my truck with my laptop & cell phone.  At one point, I look up and notice Andi's class moving outside to play with balls under this large canopy structure.  The teacher led the bunch, the speech therapist flanked the group carrying Andi's walker, and the teacher's aid, carried Andi.  I sat there and watched from the confines of my truck, and as I continued to watch, tears welled up in my eyes.  It was one of those times when I really noticed how "different" Andi is compared to other kids.  It broke my heart.  She was stood next to her walker and encouraged to join the activity of kicking the ball.  They seemingly worked to include her, but she was definitely an outsider, unable to run and chase the ball with the other kids.  I know being in school will help propel her forward faster than without. I'm thankful she's going where she is going, as I feel these teacher's are really well-equipped to deal with kids with multiple needs. I'm also glad that Andi really seems to like school!

Friday, May 10, 2013

A Brand New Chapter

This Monday, May 13, Andi will begin a brand new chapter that will continue for what we hope will be at least another twenty years, SCHOOL!!!  She will attend pre-school from 8:45 until almost 11 a.m., four days a week!  She is in a hearing-impaired pre-school where they will speak & sign, work on speech, learning, social skills, listening.  Our new OT and speech consult will happen during preschool hours.  I'm pretty excited for Andi because she will be exposed to so much more in the classroom, surrounded by teachers that can help her in ways I've probably never even thought of, and engaged by peers who will challenge her in every way possible.

I'm pretty thrilled this is happening just before her 3rd birthday and at this exact time.  I found out this week that our deductible went up from $500. to $2000. and so our therapy appointments will cost us around $150. each hour visit.  So, we're going to take a nice long break from both speech and physical therapy through our insurance provider.  There's no way I can afford to continue those therapies at this time.  For that kind of money, I think I'd rather pay for her to get hippotherapy.  That's just an insane amount of money they expect me to shell out each appointment.  Also, my deductible accrual seems to have reset based on the new contract.  I need to ask about that, because I know we'd met the $500. deductible - as it's a balance we're paying on as we can.  I have always said that if you use your insurance, you should pay for it, but given our situation, this seems seriously unfair.

In any case, a new chapter is about to begin and we're hopeful it will be the tool that sends Andi to learn, grow and develop even faster.  She is a little sponge, hungry to learn.  I'm excited to see watch her thrive!!!

Thursday, May 2, 2013

Yearly Cardiology Check-Up

So today was Andi's yearly cardiology check-up.  We headed up to OHSU for our Echo, and then we went onto meeting our cardiologist.  It was 9:30 in the morning when I shopping for parking, and all the places were taken, even my usual hidden gem of a parking area.  I had to get a slip and park in the main garage.  I asked if they were having a party and the parking attendant seemed equally surprised by the amount of traffic they were enduring.  As I drove to the overflow parking lot, I considered it a sign that our luck was changing, as I haven't parked in there since Andi was a fetus.  So we parked and I carried Andi, my backpack purse, the diaper bag, and her walker to the end of our level looking for the elevators.  As I almost got to the end, I saw a sign saying the elevators were behind me.  So we turned around.  We got to the elevators and I questioned my sanity, and strength.  We rode up with another family and they got off on four, I went up to seven.  I figured it was the 7th floor that had the bridge that walked over to the children's hospital.  We got off that floor and saw absolutely no signs, no directions, nothing.  So we got back on the elevator and went down to four.  That took us through a hot tunnel with signs to OHSU, but I really just wanted to go to the children's hospital.   I ended up getting back on the elevator and returned to the second floor.  At this point my arm was dead and I decided we must have her stroller. So, I got out her stroller and packed it full of all the crap I was carrying -- including folding up her walker and hanging it off the handles of the stroller.  I secured Andi into the stroller and we ended up walking out of that parking lot hell of confusion. By walking back to the end where I started and saw the exit as soon as I rounded the corner.  Ugh.  So, at this point I'm pretty worn out and very warm.  We have to navigate a very odd few things including getting some elevator doors nearly closing on the stroller, and one of the three most busiest elevators I've ever endured, but we made it. 

Our echo went swimmingly well, especially after I pulled out the phone for Andi pants to play with.  Once distracted by the app's on the phone, she was no longer interested in grabbing the ultrasound wand.  She did great and her tech, Randy was really impressed by Andi.  She's a charmer!

After the echo, we went down one floor to the clinics. We checked her in and I expanded her walker so she could walk around a bit.  She walked over and said "hi!" to the fish, and enjoyed the plethora of bubbles the volunteer was putting into the air around her.  After that, it was time for a much-needed snack.  We grubbed on some food and were ushered into a room shortly after.  We were weighed, measured and updated.  She weighed in 23 lbs, 2 oz's, but they always seem to have a lower weight than Kaiser!  I wasn't too sure about the accuracy of her height measurement, because I don't think she was at the top of the device.  Paperwork shows, 2' 9.07".  We finished with the PA and a few minutes later Dr Kelly appears.  He is very animated with her and she seems to like him.  He kept telling her what a big girl she was... at the end of the appointment, I mentioned 'do you remember how small she was?' and held out my hands to indicate how much she's grown.  I mean, she's still super small, but compared to even a year ago?!  She's grown a lot.  So basically, the echo showed she still has mild to moderate valve regurgitation, but it's more on the "mild" side than the "moderate" side.  Everything looks good and he's optimistic that she won't require any more surgery.  We're to continue with the Enalipril, which helps reduce pressure in the heart, to help ease it's work.  He increased the dosage based on her weight gain, and sent us off with a chorus of "See You Next Year!" 

After that appointment, we rode up two floors and landed at nine!  We walked the bridge into OHSU, went to get another "scooby snack" and marched through the busiest floor in OHSU's main hospital.  We walked across and down the hall and landed at the Physician's Pavilion, where we had our third appointment of the day, audiology.  This was Andi's follow-up appointment to getting her hearing aid.  She was pretty crabby at this point and wasn't even all that thrilled to see who she was pretty smitten with just two weeks prior.  We sat and ate another snack, then I had her use her walker to the children's area, where Andi made a friend who wore a cochlear implant.  He was much younger than Andi and almost as big as her.  It was neat to watch her interact or even study another kid, as I don't normally get to see that.  The kid  ended up totally falling off his chair and landing on a book.  He started crying hard.  His Mom tried to comfort him and Andi was so upset that he was upset, that she started crying.  It was pretty cute.  She was so charming apparently, that when the audiologist came to take us in for testing, the kid was crawling toward her and freaking out.  His Mom said he has some separation issues, but it was pretty sweet. 

Andi did really well on the minimal amount of hearing testing they could do.  Aided, with verbal commands, she blew them away and tested just below 'normal'.  They hadn't yet really seen that, so it was nice.  But, Andi was pretty worn out at this point, so she wouldn't sit still for much. 

We headed home and although she was exhausted, she still took awhile to get to sleep.  Now, two hours later, I'm having trouble stirring a Bean!

Tuesday, April 23, 2013

Promoting Health & Well-Being

Lately, I really feel myself becoming "one" with the whole 'hippie' mentality I've laughed at over the many years I've spent in Oregon.  Today, upon arriving early to the gym for my tri-weekly class I live for, I had Andi use her walker to 'walk' herself into the gym.  Destination walking seems to motivate her.  My plan initially was to have her use her walker to get in and out of the library to pick up a few Signing Time DVD's I have on hold. I should have known that something was amiss when I pulled up to the block and every spot on the block was available.  I pulled in regardless, hopped out to get her walker out of the back, and saw the sign indicating library hours.  Duh, they're closed.  So, we used her walker on the sidewalk to the gym.  It's an opportunity, and one the weather allowed. So, Andi walked into the gym today.  Once through the door, she was greeted with her usual chorus of "Andi!"  Sometimes I wonder if they know my name, but they all know Andi.  Andi got even more attention using her walker.  One man was sitting in a chair by the door.  He was well over 300, maybe even 400 pounds (I have no idea), but he commented on how cool her wheels were and said that he might be using one of those devices soon.  I just kind of nodded and concentrated on Andi, like I tend to do.  But once I got her settled, I was more dumbfounded and fired-up about what that man said.  Here's a man with what I ASSUME is a healthy body, just an unhealthy life.  But anyway, that's not for me to judge.  Hopefully seeing a kid struggle to walk will inspire others to get healthy, be well, and appreciate their health. 

I've been making Andi walk with her walker as much as possible.  She gets a lot of attention and praise, which only eggs her onward.  The more she does it, the stronger she'll get, and hopefully soon it will enable her to stand on her own. 

We had one of the other pediatrician's look at her left (unaided) ear, as when they looked at her ear on Friday - when she got her new hearing aid, they said that ear was "VERY red".  Our usual Dr. is on rotation at the hospital this week, so we saw someone else we've seen a few times when we lived up at the hospital.  This guy is really nice, and did well with Andi.  He said the ear looked okay, but that the ear tube is just sitting there and should probably be pulled out by an ENT.  He gave it one try to get it out, and couldn't.  So, we are going back again on Friday to have an ENT remove it.  So, that's $20. today, $20. Thursday for PT, $20. Friday, plus I paid $30. for our minimum payment on our balance.  YIKES!  That's an expensive week.  Luckily, weeks like these are fewer now, but they still slash a big hole in my wallet.  It could be worse.... I'll just leave it at that!  :) 

So, Miss Andi is charging forward hopefully promoting health and well-being to all she encounters.  She certainly does catch the eyes of many, and is a rather big flirt.  She also has GAINED weight!  She weighed in today at 23 lbs, 5 oz's... so we're FINALLY out of the 22 lb, where we seemed stuck for SO long!   YEA!

Thursday, April 18, 2013

Keeping Up With A Bean

Keeping up with a Bean, as well as this blog, is proving to be rather difficult.  So much going on, and not enough hours in the day! 

First of all, the roof is done!!!  They only found $1100. of dry-rot to be replaced, so...  well, at least it's done, and they're giving us 90 days to finish paying for it!  YEA! 

It seems like we've had a lot of appointments lately!  I'm not sure if that's really true, but it seems like we have.  This week we had the team from Portland Public Schools come evaluate Andi to transition her from the 0-3 year Early Intervention program to the 3-5 year program.  As she's about to start pre-school, we need to line-up services she'll need and update her IFSP.  We have the BIG transition meeting on May 8th, which will have a lot of people come together to make sure that "all T's are crossed and all i's dotted" and Andi will have everything she needs to access, succeed and thrive in pre-school.  It has been said that after the paperwork is wrapped up from that meeting, Andi can start school even before her 3rd birthday!  So, it is looking like she will start pre-school in mid-MAY!  I'm so excited because everyone agrees with me, she will THRIVE in school.  It will help her to see what other kids are doing, and might even encourage her to figure out walking quicker.  I have a good feeling about it!  The weird thing about all this, is after this transition meeting, we will basically be "released" by our 0-3 year old team - which means the people we've worked with since 10/10, will no longer be ours.  So, our OT, Kajsa (kay-sah) whom Andi absolutely adores and can actually pronounce her name really well, will no longer be our weekly visitor.  We seriously started working with Kajsa a month after Andi was released from the hospital from heart surgery, she was maybe five months old.  Kajsa is seven months pregnant, so hopefully we'll get to spend some time with them this summer as "friends" instead of 'therapist'.  But still... that part of this moving onward will likely be hard on us.  These people come into our homes for an hour and see the good, the bad, the struggles, frustration, whining, worry, hardship, stress, fear, happiness, milestones, joy, humor, and share all of it as a part of the family.  The expression of the 90's, "it takes a village to raise a kid"... well, these people are our village, more so than even our own extended family.  These people have helped us shape, mold, stretch, grow, aid, teach and strengthen our Bean.  It's going to be hard to let them go from our lives.  I actually believe we'll keep up with them, but, it won't be as often as we've been seeing them. 

Anyhow, tangent....  whoa!  I guess I have some feelings about moving onward and upward!  HA! 

Tomorrow, we have our twice-monthly hearing impaired playgroup.  This is held at the school where Andi will be going for pre-school!  It's an opportunity for not only the kids to get together and realize 'they're not so different afterall' (anyone else singing a part of the song from 'Signing Time'?!?) but a place where parents can interact with other hearing impaired parents, and the teachers!  There's one Mom there with three boys.  The youngest is hearing impaired.  All her boys are adorable and Andi likes to flirt with the oldest!  She's someone I would hope to arrange play dates with down the road.  I find that my social skills are extremely rusty in these instances though and I'm rather embarrassed by my shyness at times.  I'm horrible about asking about others' kids and how other people are doing... I mainly speak when spoken to - which is rather shy of me.  Maybe just by writing that here, maybe - just maybe, I'll do better tomorrow!   

Anyhow, tomorrow afternoon we go up the hill to the hospital for Andi's 1st very-own hearing aid!!!  Yes, we will finally give-up the lender hearing aid from Columbia Regional.  We probably have to return our Signing Time videos we borrowed from the too.  Oops.  Luckily, we're getting them from the library now too.

And on that note, our exciting news is that Andi has taken the first steps toward potty-training!!!  We've been watching the Potty Time (Signing Time) video for weeks, introduced the potty chair, and even read a Potty book we borrowed from the library.  The stage has been set.  So yesterday, I got her to sit on the potty for two hours.  Two hours she sat there while we had Potty Time playing, toys to entertain, and a very full bladder.  It took two hours but she finally went.  The potty started talking to her (because it electronically registers that we've got a pay-day) and so we sang "celebrate" and made a big deal about it.  She said "bye-bye potty" and we moved on with our day.  Later that day she said "more potty" so we tried again, nothing.  Then when Kajsa was here for our weekly session, Andi decided again to strip off her pants and diaper and "more potty".  She likes to do the yoga pose 'downward dog' a lot from the potty.  That basically shoots her bare butt in the air with her poop chute exposed for all to see.  It's pretty funny if you're not disgusted with butt- chat like Daddy Bean is.  (HAHAHAHAHA!)  In any case, she did that several times yesterday, only to pop off the potty and "PP" on the rug.  She doesn't yet have the body-awareness, but, she'll get there!!!! 

On that note, I think I'll leave you all with the visual of naked baby downward dog pose.  Cuz if you're going to keep up with a Bean, well, that's our latest!

Saturday, March 30, 2013


Not only does the g-tube NOT leak, but it's seemingly completely healed.  Andi is doing great!  She is plugging along, learning new words every single day.  She's learning them quicker and repeating them even more often.  She's starting to really put words together too.  'Hi Dad! How are you?'  "Where's Ashley?" (her favorite gal at Kid's Camp @ the gym.)  So, things are going really well.  We're trying to work on walking.  Yesterday we walked down the street to say "hi" to the trees.  Yes, we're destination walkers.  Gotta have a goal to strive for.  She walked halfway there with her walker, and the rest of the way holding onto my hands.  I figure whatever way we get there, the more she does it, the stronger she'll get.  I haven't noticed huge changes, but I did see something new yesterday.  I sat her on one of her three riding toy and we saw her actually proper herself forward using her feet.  I know that sounds pretty inconsequential, but actually, that's a pretty big deal.  She's getting stronger.

She had a cold a week or two ago, but that has finally gone.  Today, is by far the nicest weather day we've had since last summer.  I got the lawn mowed and some trimming done while Andi naps.  I would be out there now doing a bit more, but that requires some items from the garage.  And... well, when I went out there last time, I saw what I thought was a mouse.  Upon discussing it and it's size, we've determined that it was a rat.  It's just walking around my horribly cluttered garage, like a scene out of Hoarders or such.  I'm so completely grossed out, I probably won't be going in there to clean it out anytime soon.  Ewh! 

We've signed the contract to have our new roof, insulation & gutters done.  There are a lot of repairs to be done to the wood supports.  It's gonna hurt the finances bad, but, it HAS to be done.  Hoping it is smooth sailing with no hidden surprises.  Otherwise, I think I'll implode.  So, here's hoping that all goes without a hitch!  We could use just a little more good luck!  :)

Ooh, lil' bit is waking from her nap!  Time to go enjoy the sunshine!

Tuesday, March 12, 2013

Ding Dong, The G-Tube Is Gone!!!!

Yesterday, we awoke and raced around prepping for our big-time appointment.  I threw Andi, well, not really 'threw' her, into the tub for what I thought might be her last bath for awhile.  We got cleaned up and out the door.  We stopped at the grocery store to pick up some cake, a balloon and party-gifts for the Dr. & nurse.  We raced to our appointment and by this time, Andi was pretty upset.  She was whiny, clingy and crying.  She made me wonder if the previous nights' dinner was upsetting her tummy.  So, by the time we got checked in and awaiting our turn at suite 1, Andi was pretty agitated.  She had been crying, turning her cheeks & eyes red.  Maybe my enthusiasm was a bit too much for her, I don't know.  I tried my best to secure a great mood of celebration, but, that is not what we got, at all.

The nurse, whom we adore, is 36 weeks pregnant with her second child.  She has told us on numerous occasions that the one thing she was looking forward to all day was seeing Andi.  She is a huge fan of Andi Bean, and has even shown up with the pediatrician to see Andi off to one of her seven surgeries.  Although, I can't remember which one.  I think it was #5, which was sealing up the leaky g-tube, putting in a central line for TPN, blood draws and med's - while we waited a good week for the stomach to heal.  Andi fell asleep in her arms, which is how we saw her off to that surgery.  Precious. So, we brought her a really small baby gift.  She's having a boy, and so I found a dinosaur themed outfit, there's a dinosaur on the butt of the pants, and the onesie says, 'My Momma Rocks' or something like that.  That spoke to me, because she's been an amazing friend to Andi and me.  We also brought cupcakes.  They were ugly in a thick green frosting, but on top of each cupcake was a Mickey Mouse ring, which spoke to me.  Andi's becoming more fond of Mickey Mouse.  I figured the ring might be a good distraction.  So, Andi is crying for the nurse, although she'd take breaks from the wailing to entertain something the nurse had to say.  Then, the Dr. peeks in and says he'll be a minute.  "No problem!"  I go back to my constant in the pediatricians' office, calming a Bean.  We sing songs, quiz about anything, and even play a lame game of 'pretty baby in the mirror!'.  She likes to see herself in the mirror and sometimes, that really squashes a bad mood.  The pediatrician comes back in and makes a joke about me not wanting to take out the g-tube that day.  I don't even think I laughed at all, but was still in celebratory mode, despite Andi's bad mood.  He reminded me that I could have done this myself.  I agreed and said, 'yeah, but I wanted the hole symbolism of doing it here with you guys', as we were FINALLY closing a VERY long chapter.  It seemed only right to do it together with them.  I can't even count how many times I went to appointments just about the g-tube, whether it was the leak, the puking, the acid-burnt skin, etc.  It's been too many to count!  After he took out the g-tube, he put a little silver nitrate on the hole to help stimulate it to close.  Taking out a g-tube is nothing more than using a special syringe, attaching it to the balloon port, and drawing the water out of the balloon.  Then it slides out.  It's pretty dang simple, honestly.  It's gross, but it's simple. 

So, here's a before/after of the g-tube removal.  Again, Andi's only crying because she was in her pediatrician's office and she was probably pretty sick of my super-hyper, over-the-top enthusiasm cheering on this moment...

Now we just have to hope the hole closes up on its own.  We have six weeks to watch for that.  If it doesn't close, then they will have to go in and surgically close it.  Apparently, it's a pretty intricate surgery and will require a few nights stay in the hospital.  I interrupted him when he was telling me about it, because honestly, I thought I heard him say $1500., which is what I told him.  As he started to continue about the hospitalization, I repeated, 'all I can hear you say is $1500.'  This is said despite the fact that he didn't say anything about cost.  That's just what I heard.  I am probably a little too vocal about cost, but I don't care.

So far, we haven't really had much leakage, not like the first g-tube.  I have kept gauze on it and when I change it, the secretions are minimal.  The Dr. said I could give her a bath whenever.  He actually encouraged it saying that it would be good to help with healing. 

This morning we went to observe Andi's future preschool.  Andi is going to go to a hearing-impaired preschool when she turns three. We got to see how the kids come in on the bus, line up, march to class and the routine of their day.  It was really super cool and I'm anxious to get her started.  I know an environment like this is exactly what Andi needs to help her  take off.  We have our Early Intervention evaluation to come up with her game plan for ages 3-5.  So, it's likely Andi will go to preschool four days a week, from 8:30 - 11 a.m.  It might start right after her birthday, for two weeks, or we might have to wait until July.  I am hoping we can get those two extra weeks before they go on break, because I know Andi... she is going to grow leaps and bounds being surrounded by other kids, seeing what they do, and it will challenge her in ways I cannot.  I'm super thrilled at these new chapters lurking before us. Beyond thrilled!