HAPPY 4th BIRTHDAY Andi Bean!

Here's a video showcasing the past year!  Lots of amazing things happened this past year!  So proud of our super trooper!

https://www.youtube.com/watch?v=FJ9SPa-dtZ8&feature=youtu.be

6th Annual CHARGE It For CHARGE! (Andi Bean!)

We are participating in the 6th Annual CHARGE It For CHARGE fundraiser!  Andi Bean has her own site and our goal is pretty hefty.  So get out your wallet, dig deep, DONATE on behalf of Andi and her many friends who've endured massive amounts of crappy days.  EDUCATE others on behalf of the families that have had to endure the question, 'CHARGE Syndrome, what's that?!' from everybody, including medical professionals.  SHARE your knowledge of CHARGE Syndrome, Andi's story, the fundraiser page.  Help us improve things for the future families of CHARGE Syndrome. Help us end the question, "CHARGE Syndrome, what's that?!"

http://CSFsixthannual.kintera.org/andibean

Always A Reason To Party!

Started the process of recruiting models for the 2015 CHARGE Through The Year wall calendar.  In 24 hours, we have 60 CHARGERs signed up to possibly be featured.  Initially, I was thinking we'd do a draft party and have Andi Bean draw names out of a hat.  Who doesn't want a reason to have a party!?  But now there are so many candidates, I'm thinking of a much different design, which would include everyone!  Trouble now is finding a printer whose program will allow me to manipulate the design to have photos and copy wherever I want on the page.  Perhaps creating it in MS Publisher and uploading it...   we'll see, I have much work to do.

Tomorrow is the last day of school for Andi as a part-day preschooler.  Here's a photo of her this morning at 5:45! Only Andi is that chipper at this hour.

Gotta love that dainty hand action!

Six days until Andi's 4th birthday!  Stay tuned for her yearly birthday video!  Well, her second annual video... we were a little bit busy the first two years!  :)  Need to get a card in the mail to Dr. Langley, Andi's heart surgeon that really turned things around for her.  Every year for her birthday and Christmas, we usually send him an update.  Sometimes it doesn't happen in May, so we send it in September, when he did the surgery.  I want to send him a copy of the video if I can...

Uncle Chris is coming into town Sunday for a near week-long visit!  We're super excited to have him here. Poppa & Ginga are coming next week too!  Andi will be so happy.  I'll be sneaking off to New Orleans to have some fun!!! (...kidding... just kidding!)

Our neighborhood pool is apparently open.  Andi and I are debating going down there this afternoon to cool off.  Will be fun to get her in the pool regularly, although her skin won't like it.  She's had a bit of eczema going on at the wrists lately.  Good times! 

Lastly, we have a new family moving into the house across the street.  Now that I live in a grown-up house, in a grown-up neighborhood (so, it feels like to me!)... I did the 1950's neighborly thing (sort-of!)  I did what all housewives in the 1950's did... yep, I took them a Costco apple pie!  *HA!*  While I was putting the pie in a tote, I remembered how crazy it was the first few days of moving.  So I threw in some napkins, some plastic utensils, a roll of paper towels, and some cups.  None of the neighbors did anything like that for us... so, I did what my Ma taught me.  Treat others as you'd like to be treated!  Or my version, just make the rest of them look bad!  HAHHAHAHAA...

There's always a reason to party!

Deducing Deductibles

So the Hippotherapy lady got back to me today.  Once we meet our $5000. deductible, the insurance program will pay for all her therapy, even hippotherapy.  So basically, every year - after the Christmas holiday where much money is spent on gifts, and parties, entertaining... at the beginning of the year, us special needs parents are essentially to shit out a $5000. check so we won't be nickel, dimed, and medically billed to death.  To pay out of pocket, this therapy is $120. an hour.  So, let's break out the calculator.  If we just did hippotherapy, twice a month at $120. a session that equates $2880. for the year.  You add on the pediatrician appointments (cost unknown), speech therapy (haven't inquired yet), and all the other therapies Andi could easily use, SI (Sensory Integration), PT, music therapy... geez, we could easily fork out $5000. in all those services.  Instead, we choose to tackle a lot of the practices ourselves because really, who can afford all that?!  Keep in mind, I still only work PT and sorry, Cory isn't paid what he's worth.  If we had an extra $5000., yeah, I could see that the yearly deductible would be doable.  But no... we're still paying off last year's deductible to both the insurance provider and the hospital.  It's insane!  I often wonder if / how much further Andi would be along if we afforded her every therapy out there.  I mean, could she be running along side her peers now?  It's frightening to consider that everything you do or don't do for your child has an impact, some negative.  It's true whether they have special needs, or not.  But, for those that are special needs that are simply fighting harder to "catch up" to their peers, or learning to speak so they can talk to their parents... it's just a harder 'what-if' to swallow, worrying that you're stalling their progress.

In the course of the year, we'll probably spend $5000.00 on services.  I keep forgetting that I'm supposed to apply for SS today so I can get a fresh letter of denial.  What a joy this process will be, I'm sure you're jealous!  But, you do whatcha gotta do for the Bean... and for her, I would do anything!

Nine days until Andi's 4th Birthday!!! 

Summer Waiver

This week, like most weeks, has simply flown by.  Yesterday, I googled Hippotherapy services around us, and left message at a place not too far away.  Today, I received the call back.  In speaking with the therapist, she suggested we apply for the Katie Beckett Waiver which is available to us here in Georgia.  "uhm, the what?!" I think was my reply.  In Oregon, we didn't qualify for any sort of assistance because of our income level. While I understand that, I've never understood why a child with ongoing need for multiple therapies isn't given assistance -- that the parents should have to cough up the equivalent of a car payment just so their kid could go to therapy once a month.  Yeah, once a month.  The idea of getting help to send Andi to therapy more often just fills me full of joy!  I can only imagine how fast she'll blossom with additional hands-in to help!  So after I sent the Hippotherapist our insurance information, to see if we could bill the insurance company for their services, I googled the waiver.  I googled, and I googled, and I googled some more.  Basically, I have to jump through a series of flaming hoops, and it's an extremely complex process -- for example, applying again for SSI so I have a fresh rejection letter. (...cuz that makes sense!)  So, I'll talk it over with Daddy Bean and if he agrees, I'll tackle that project in all my copious free time!  (silently laughing because I'm sitting here laughing at the massive list of things I have to do and simply run out of time!) 

This week I tried to research a few options for summer programs that might help Andi.  The only seemingly affordable, appropriate one I found was a music camp.  Five weeks, one day a week for 45 whole minutes.  That ran about $20. a session.  Andi loves music, but she's very opinionated as to what she wants to hear and when. She'll meet someone and she'll start rattling off her list of favorites, "Billy Joel, Queen, Pet Shop Boys!" and the person receiving this list just looks at me to ask 'what is she saying?' Might be a good class, might not.

I found that Atlanta Speech School would be a great summer program.  It's speech, plus OT, and all those other things combined.  Oh, for only $10,000. or so.  (...coughing!) Oh, but 25% of the people there get some sort of financial aid.  (...laughing!)  I wish!!!  Even when I find FT employment and get us into a new routine that will include some after-school care of some sort... there's no way we could cough up that kind of additional coin.  I've got a 14 year old truck with 160,000 miles on it that wants some new part or he isn't going to play nice with others!  I have parts of that truck engine that are still factory parts that need to be swapped out.  But anyway... maybe down the road.  We all want what's best for our children.  We're both educated, working people and we want to give Andi Bean the best possible foot forward. She's already had an uphill climb, more so than most kids. She should be given every opportunity available to her!

Daddy Bean and I are in cahoots to hire us a babysitter tomorrow night.  We're talking about going out on a date night. I think what frightens me more than inviting a stranger into our home and hang out while our kid sleeps, is the realization that I'll really have to kick it into high gear to stay awake, and try to enjoy the break!  Our schedule has been so early every day that when 10 p.m. rolls around, I turn into a big ol' pumpkin. 

Andi's standing here at the desk and just saw her name. She said, 'Andi ... that's me!'  'yes, this is your blog!  This is all about you!'  Then she stood here for several minutes, probably trying to memorize all the different words before her.  She's so dang funny, and smart.

Today, I got on video her singing Queen's 'Don't Stop Me Now' with her headphones on.  I don't think she could hear herself well, because usually, she does better than this performance.  But it was pretty fun to watch her.

Andi has one week left of school. I've noticed being in this school, she's relying on signing again a lot.  I think it's because there is an interpreter in the classroom at all times.  I want her to keep up with her signing, but I also want her to focus on her enunciation, speech, sentence structure. I should probably structure her summer days to something similar to school.  Coloring-time, story-time, play-dough time, music.  Set her up with some sort of projects.  Only problem is her short attention span.  I have to strap a saddle to her and ride her like Seabiscuit to get her to stay on-task.  I think my list of things to do will only continue to grow!  Maybe I like Portland's sort of year-round school a bit more.  We shall see!

The Past, The Present, The Future!

I guess I'm vying to be "the problematic-parent from Portland" when it comes to Andi's school.  Today, I wrote an email asking the school to rethink the classroom that Andi's in, as it is WAY TOO SMALL to house a Bean.  With eight kids, a teacher, a teacher's aide, and a ASL interpreter.  11 people in such a small area is not okay.  Hopefully, they will hear my concerns and try to find something a little more spacious for them next year.  Andi only has another two weeks of school and then they're done for summer. Which reminds me I need to contact this program to see if they have any sort of summer camp that Andi could enroll in.  When summer break ends, and the new school year begins, Andi will be going from 6 a.m. (likely she's still be the first on the bus) and go until 2:30!  She'll likely still be last off the bus too, which would be around 3:30!  Yikes.  That's a very long day for a four-year-old.

When I find a job, which is proving to not be a lot of fun, I am unsure how all this will get done.  How will we get her to appointments, and what do we do if we have another day where she needs to be picked up from school!?  I haven't encountered the work/home life balance fight... so I'm wondering how well *cough, cough*, okay, how poorly, I will handle it.  I'm having trouble figuring out what I want to do, and all these job titles make my eyes glaze over, annoyed.  It's going to be very difficult to find anything remotely half as decent as what I've been doing these past 18 years.  The other day I was remembering what it was like to go into the office everyday and work on different projects, with my heater cranking under my desk.  I loved my desk, my office.  I miss seeing everyone every day, and way back when, taking smoke breaks with my coworker and hearing his tales of growing up in the area.  It was fun, and I am starting to really miss it.  Since Andi was born, I haven't been able to think about me, my career, and what I want out of this life of mine.  It's all been about her.  Her needs, her appointments, her therapy, her well-being.  To switch to the land of 'ME!' is not only decadent, but scary and I guess, ultimately, one thing to celebrate.  I should be thankful we're in a place in her life where I can go and do for me... but being thankful doesn't make me any less frightened.  Wherever I land, I doubt it will have similar shoes as where I've been.  My bosses and coworkers have been my family, held me up so many times over the years, and I doubt I will find that level of comfort any where else.  I have to come to accept that.  But, as I move forward in my quest to find the next phase of my life, I can't help pause and mourn the life I will be leaving.  (uhm, ...if I ever find a job!)  But, right now, I'm savoring what I have, where I've been, and trying to stay hopeful about where I'm going.

Changing Plans

Today has not gone as planned, at all.  I awoke in a funk of haze.  After Andi got on the bus, I came into the office to get cracking on all things.  I sat here and just found myself unable to get going.  So, I put on my workout clothes, grabbed the dog, and headed outside.  We did a walk/run to the end of the neighborhood and back.  Pretty quick trip, but it got the blood pumping. Not long after my shower I got a call from Andi's teacher.  I said, 'uh oh!  what's wrong?'  Apparently, Andi puked on the bus this morning, and I needed to come get her.  She puked with an empty stomach.  That usually indicates a gas build-up and thus some reflux.  [I did feed her kielbasa and baked (farty) beans for dinner last night!]  I picked her up and she was rather quiet.  We drove back toward the house, with the plan to stop off at the new pediatrician's office.  They need a copy of Andi's 400-page medical file, which arrived yesterday!  So we navigated the campus, the parking lot, the various buildings.  She walked most of the way holding my hand.  She was still quiet and seemed very tired.  Hmmm, I thought... she must be exhausted from this week.  While we were out, we ran to Costco to restock our basics:  wine, wine, wine, oh, and a rotisserie chicken (of course!).  We got home and I fixed her a hot dog.  She ate, and I thought, hmm, she probably hasn't eaten all day.  When she gets to school, they have breakfast.  However, if she got sick on the bus, they probably didn't feed her.  She started to perk up, and I felt bad... she was hungry.  I checked her hearing aid and the battery was dead.  I felt bad about that too, but knew something else was amiss when she didn't sing along to her favorite songs in the car.  After lunch, I determined she still needed to lay down and try to nap.  That was 3.5 hours ago.  She is still sleeping.

Yep, something's up. 

She had a cold last week... wondering if it's trying to make a comeback!  Either way, I'm letting her sleep and sleep and sleep.  Poor Beano!

Meanwhile, the guys came to clean & service the hot tub!  This house came with an outdoor hot tub.  It's been neglected!  It needed a good scrubbing!  I was surprised how little they charged for that... but, it's all dialed in and warming up!  We can use it tonight if we want!  Yippie,

Earlier this week, these guys were here to install the pool table we bought last weekend.  Daddy Bean has always wanted a pool table, we had a little money left and the room... so we went for it!  Just for the record, we've played two sets of three games this week.  The winner of both of those sets is ...   ...yours truly!  My streak might not last, but least it's documented here for public consumption and record. 

Andi's awake finally.  Seemingly restored, and hungry.  She's sitting with her iPad on the couch watching Miley Cyrus videos.  I'm trying to figure out how to remedy (uhm, block) that.  Nothing like letting your near 4-year old watch Miley in her underwear swing back and forth on a ball.  I must be getting old, because my tolerance (uhm, appreciation is a stretch) for that shit is gone, gone, gone. 

So, today hasn't gone as planned.  Plans derail. Plans change. It's how you regroup and rebound from the obstacles that jump in your way.  On that note, Miley's gotta go!  Toddles.