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.

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:

http://youtu.be/F70U1YtoD3A

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.