4th Birthday Photo Session

4th Birthday Photo Session

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!'