The CHARGE Mafia

It's been awhile since I've written. Sometimes, when shit happens - I need a place to park it.  I need to purge & process the emotions, the situation, the grief.  Our CHARGE Syndrome family has collectively come together in ways I hadn't seen before to rally around a family in distress.  Their son was recently rushed to the ER, and been in the hospital for a few days.  They did exploratory surgery and relieved pressure in his abdomen. The prognosis wasn't good.  He was fighting for his life.  The CHARGE family turned into The CHARGE Mafia before my eyes.  We all took pictures of our own CHARGErs holding 'Get Well' signs or iPad's lit up with encouraging sentiments.  The whole community turned into a protective circle of encouragement, energy, and prayers.  It was unprecedented.  Did you know that there's a 15-20% chance that a kid with CHARGE Syndrome will not survive to the age of 5.  That's around 1 in 6 kids.  1 in 6... how incredibly jacked up is that?!  I guess I live with blinders on most of my days, because I can't even grasp that.  I always heard and believed that if they made it through the first year - they'd be okay.  Revise that number Momma, the age is five, not one.  Andi's not even four years old yet. 

As for this family in distress, the Dr's went back in this morning and concluded that the damage to his organs is just too great.  He will not survive.  So here's this incredible family having to say goodbye to their 15 month old son. 

The CHARGE Mafia has started a collection or fundraiser to help this family.  While money doesn't help with grief, it does alleviate financial worry and strain at a time that no parent should have to endure. We're asking people contribute what they can, even $1. will help.   If you can donate, please go here:  http://www.youcaring.com/medical-fundraiser/connor/124026


And because I have no where else to park my own grief, worry, and overwhelming emotions - I have to say it here.  I absolutely HATE CHARGE Syndrome.  It breaks my heart to have these kids fight for their lives, harder than most of us fight for anything, and 1 in 6 don't make it.  1 in 6 lose the battle.  Yet, all of us, me included, waste our health.  We yell at our kids to be quiet.  We lose patience when something or someone isn't fast enough, or the way we want them.  If only we used that energy toward something positive, like supporting those fighting hard to live, fighting for health, fighting to survive.  Good God, stop abusing your own health.  Stop when you start to lose it, and reflect on others and what they might be going through before you utter anything negative.  And to my beloved brother whom my baby girl loves more than anything... stop smoking.  Stop using it as a crutch.  Stand on your own two feet, tall and proud... I love you, she loves you, and we need you here.  Be healthy and free of the negative shit that holds you back, holds you down.  Sorry to single you out, but damn-it... you're too important to us and I love you.  To the rest of you, you too have been challenged, find ways to improve all our lives.  Educate others about CHARGE Syndrome.  Remind others to cherish their health.  And as you go out your door, go through life with gentle hands, gentle eyes, and an open heart. 

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! 

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.

 

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!!

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.