Pee Piles & Antibiotics = GOOD TIMES!

Potty Training ain't for wimps!  Today, we haven't had much luck either, but this afternoon... the pipe burst and the Bean pee'd all over the kitchen floor.  She looked down seemingly surprised by the puddle at or on her feet.  She'd pick up a foot and then try to move away from it, but find herself still submerged. We're working the potty training chart, earning a sticker for each attempt.  Sometimes, I just want to stick her in a diaper, close the office door and let her continue to listen to Pharrell over and over... (uhm, that's going on this minute!)

Two days ago, we met our new audiologist.  Liked her instantly on the phone, and just as well in person.  She tested Andi's hearing and came up with similar findings as the Portland Audiologists!  Yippie.  They even put in a new tube to fix the one Andi pulled out of her ear mold.  It's a bit long though and makes the actual aid fall off her ear.  Boo! ... but an easy fix.

Yesterday, I called to get Andi in to see her new pediatrician before the 6/23 'Wellness Check'.  Thus, also giving me an opportunity to pick-up her 400 page medical file they scanned into their system.  The retriever of that file said, 'whoa! that's a lot!'  I didn't have the nads to say, 'yeah, and that's just the Kaiser file, not the hospital file.'  I thought Andi had a nice case of pink eye caused by touching her eyes with dirty (poopy) hands.  Turns out the cold she's had for awhile is a bit of an infection, so she's now being treated with Amoxicillian for 10 days. The goop out of her eyes is considered mucous coming out from the sinuses.  I guess I should hand-back my white Dr's coat (that I bought at Marshall's) and hang up my fake stethoscope.  Time to stop self-diagnosing... ugh.  But hopefully, she'll be snot-free soon.

When we go back for that wellness check, the Dr. wants to spend a full 1/2 hour appointment.  Before that appointment, she said she will make time to read Andi's file, as I just gave her the highlights during yesterday's appointment. I need to have all my papers in a row for the Katie Beckett Waiver and she'll sign what I need her to.  All in all, felt good about about the initial meeting.



Yield!

Here's Andi's first car.  A convertible, of course!  Still working with the company to troubleshoot the lack of horn & engine noises.  Hope we can fix quickly, because I'm sure Andi will be all about tooting the horn like Max, a character in a book she likes!

Having A Ball!

 Andi took uncle down the street to Catch Air... a super fun place to play.  Andi's been doing some couch diving since, having discovered she likes the sensory input.

SuperCHARGEmodel!

Princess Andi!   

 

Doozy Of A Day

I'm not very proud of myself today. Some days this life is just hard.  Really, really hard.  Days like today, even reminding myself how far we've come and how lucky we are, didn't shut out the frustration, and anger.  It was difficult to be kind.  I am so disgusted with myself, and that's a hard thing to admit.  It's the 2nd week of Andi being out of school.  Her routine is gone.  Last week, uncle was here, and even Poppa & Ginga for a few days... last week was fun.  But here it is a new week, and it's just Andi and me, and Maddux the dog.  Let's not forget Maddux who is not as innocent as he seems in today's debacle.

Today started out innocent enough.  Daddy had to get up extremely early to head out of town for an overnighter at a different office.  I "slept in" ... until 6:15 when the princess decided it was high-time to get up and get started on our day.  Shortly after getting up, it started.  Potty training.  My game plan this time is to leave her bare-butt and "sit on the potty" every 20 minutes or so.  Every time she sat on the potty, she was given a sticker for her homemade (a.k.a. 'lame') potty chart.  If she went "pee pee" on the potty, she would be given five stickers.  If she dropped a stinky, (snickering because Daddy Bean would roll his eyes!), she would be given 10 stickers!  10 whole stickers!  Now, I'll have it be known that these are (insert sarcastic tone here) VERY impressive stickers.  The first sticker was a $.10 sticker from box I bought when I thought I'd actually do a yard sale in Portland.  The rest are a gift from once giving St. Jude's $20. a few years back.  There are soccer balls, footballs, butterflies, ducks, flowers... really super tiny ones...like three of them would equate one of my fingertips.  Whoop! Whoop!  Fancy!  Well, Andi got into it, and spent the majority of the day parading herself around the house butt-naked, and collecting a sticker every so often.  She never went potty, and she never had an accident (that I've found, anyway!)  She collected 12 stickers.  We resorted to a diaper twice, no, three times.  One when we went for a neighborhood walk to shake up our energy.  One after lunch when I know she normally drops it like it's hot... (bad use of lyrics, ...but I can hear a few people I know chuckling!) And lastly, when we ran up the street to Sweet Tomatoes for a to-go salad to turn my frown upside down! 

So, let me share the rest of the story... weird... we were just talking about Paul Harvey the other day!  With Andi out of school, I have to find ways to keep her occupied while I sit in my office and work.  If I'm not working, I'm "networking"... I'm looking for jobs, or checking in with Facebook, or working on the calendar, or trying to figure out how to make Twitter cool if you have nothing to sell, or simply trying to catch-up on balancing two checkbooks as we transition away from our Portland bank and switch to our new bank.  It's usually a full-day of office time for me.  I'm always online and I'm trying to get stuff done.  THAT says it right there.  I'm TRYING TO GET STUFF DONE!  So, let me refresh your mind.  Andi is home, not engaged in her Yo Gabba Gabba or iPad, or Barbie/Ken, her countless books, play-dough, toys, she's having none of that today.  With school, she's used to being engaged and here I am, totally unavailable.  I try to set her up at her table (next to my desk) with play-dough, but because I'm not sitting there like uncle Chris did last week, she keeps coming over, wanting up, interrupting me, or simply trying to get my attention.  She won't leave me alone no matter how many different activities I tried to set her up with... and therefore, she won't let the dog alone, because that's what she does... smoothers the dog.  It's really, really annoying, frustrating, and irritating. 

So, I start yelling.  I start time-out's. Double time out's.  Taking toys away.  Well after she colored the wall with a blue crayon, it was when she ripped out her hearing aid and separated the new mold from the tube, I snapped.  Yelling at her, I actually spanked her bare lil' butt.  Usually she laughs, but this time, she looked at me like 'Wow, I'm in trouble!'  Now, for those that don't really know me, I'm not beating my child, so please... back off.  I'm trying to discipline an incredibly smart, incredibly fearless (in certain regard), high pain tolerance Jekyll that just laughs at you when you try to correct behavior.  Like I said, I'm not proud of myself, at all.  I don't want Andi to grow up with someone yelling at her. I certainly don't want her thinking to hit is okay.  She really just wants someone to play with her. Someone to engage her.  Someone to teach her.  I feel so heartbroken. I wish I could have given her a sibling to help her, but after what we went through and my age, I just didn't think I could handle it.  I get so frustrated with her holding onto my legs while I'm in the kitchen trying to move around.  I get so irritated at going into a store, or anywhere, and having to hold her up or carry her... because her walking is so sloppy and slow.  She moves in a different rhythm and sometimes I don't want to take a half-hour in the store to grab four things because she wants to push the cart or hold my hand while I steer the cart with the other. 

I wish I didn't have to work, but I do.  I need to work more than I do so I can pay someone to take care of her, engage her, entertain her, teach her.  I need to get an identity of my own that isn't just "Andi's Mom".  I need to stretch myself, so I can be better for her.  But yeah, there are days like today, where despite all the obstacles she has overcome, it's still hard.  Andi's made me a better person, but she hasn't made me perfect.  Some days, I just lack patience. Today was one of those days.

I failed to include Maddux's part in my furor. The barking.  A neighbor three doors down farts, and Maddux feels the need to bark.  The neighbor comes home and he can see her in her driveway across the street, and he needs to bark.  Heaven forbid someone actually knocks on our door... It's totally annoying.

So, I'm putting the cap on this day and stepping away to zone out in front of the TV before I crash and try to refresh for a brand new day.  At dinner, I asked Andi for forgiveness for losing my temper.  She was quiet and soon-after was nodding off asleep in her high-chair.  I guess this day has been a doozy for both of us. 

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!