lil' reminders

There are little reminders all around us to help us remember that our Bean is on her own path, taking the long way to get there, the scenic route.  Today, I went to put her in one of those standing activity gyms, as I was thinking, 'okay, she's over four months' (the age requirement on the box), and I really want to get her working on her balance, since we know she will have balance issues.  I put it on the shortest notch and still, our lil' Bean's feet are no where near the floor.  She's not yet big enough for that play-gym.  She's also not yet strong enough to hold herself up.  She's almost five months old, but because of all the things she's been through, it will take her longer to get there.  Honestly, this reminder depresses the hell out of me.  It's a glaring siren that not all is okay just yet, and we still have a long hard road ahead of us. Next week we have a bunch of specialists coming to meet the Bean, to evaluate what services or therapies she will require, so we can get moving forward with making that happen.  I spoke with a hearing specialist today and we touched base about getting the whole hearing aid process started.  If it wasn't such a task, I'd throw the Bean in the truck and take our paperwork down to the post-office.  It's just easier to wait until her Dad gets home and then run the mail over to the post-office while he watches her. Almost sounds lazy of me, but, for anyone who has had to haul a carseat and a diaper bag for a trip a mere mile away... it ain't really worth all that.  Throw in a good ol' O2 tank too... uh, no thanks... I'll wait.  We were out and about most of yesterday and the Bean did not sleep much yesterday.  Today, she's been sleeping most of the day.  I'm sure I will be so thankful of that at 3 a.m., when she decides it's time to get up and get going on her mirror gazing and "pacie" obsession. 

Tonight I really need to bring myself to get started organizing her medical binder.  The hospital or the March Of Dimes, provided us with a binder that we just 'fill-in' the information so that at a moments notice, anyone, any Dr. can pick up the binder and read about the Bean and all the fun she's been having.  I used to be a neat-freak... and this is one organizational ordeal I can't seem to get jump-started on... maybe it's a bit too overwhelming being there's nearly five months of hospital discharge summaries, copies of Dr's visits, lab results, and my personal favorite, medicial statments that aren't really bills, but a big ol', "look at what we're charging your insurance for your last stay with us."  Yikes-o-rama!! 

The Bean has awoken and wants to be held.  She's on the verge of falling back to sleep, reclining on Mom's arm, while I resort to one-handed typing!  Ooh, big bright blue eyes gaze up at me, nap-time is apparently over! I sit her upright on my lap and she watches me type, her hiccups almost keeping beat with the Bing Crosby song playing on the computer.  There are lil' reminders of what she's not yet ready for, but yet, so many other things we can do to get her there.  It's just a matter of keeping focused, being creative, and working toward making our lil' Bean a big ol' butterball of health & happiness.

Ginga Withdrawls

Ginga's on her way back home, and we're back on full-time duty.  The Bean went on a social visit today, and has been overstimulated and awake.  She's sleeping now, it's going to be a 3 a.m. morning, isn't it!?! (Ginga is silently laughing at us!)  It was a great day.  A couple diaper blowout's and one large projectile vomit an hour after eating... ah, tis the glamourous life.

We're missing Ginga.  It's been a nice break from the intense responsibility.  Tonight will be our first night with the Bean downstairs with us again.  Hopefully, the evening goes well.  She's tired and should sleep.  I know I'm ready to sleep - I'm pooped.

Andi has decided that she likes comments from her fans.  She wants to know you read about the thrills of her days.  If you have an itch to write her a note, please do so - as, she's a social lil' Bean... Considering her first four months, she itches like a methadone addict (ha-ha!) for interaction.  So, give her a shout out if you feel so inclined. 
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We want to send our well-wishes to Oskey's and Ayla's families.  Losing a loved-one is never easy, but I personally think losing a beloved pet is harder than anything.  We loved both pups and will forever hold them in our hearts. We'll never forget snow-shoeing with Ayla and camping with Oskey.  They will be missed.

On that note, Maddux is about 20 lbs overweight.  He's 94 lbs, which is probably his 2nd heaviest weight.  His first being 96 lbs, post-op.  Taking him to daycare is just too big of an ordeal, but, we're going to work on a new plan as that extra weight is not healthy for our Madder-Bean.

The Bean is awake and kicking up a storm in her Daddy's lap.  She's having some fun...

"Ginga's Gotcha!"

Until 7 a.m., "Ginga's Gotcha!"  Those are the sweetest words I have ever heard, as of 7:01, Momma's back on the clock...

I'm currently all dolled up in my Sunday best, and awaiting my hot date.  Sadly, it's not Nate McMillian, but luckily, Andi's Daddy still wants to dine with me!  Yippie!!!  I think we're dining high on the hog tonight, as it's Ginga's last night on duty.  "Oh, Bartender!!!!"

Seriously, the Bean full of snot.  To quote my own Mom, "it's snot funny!"  Yeah, she was funny like that.  The Bean has on her pink UGG boots.  A little much for an early fall day... but still, they match her zip-up... so, it's appropriate in that sense. 

We're listening to Ray Charles "Georgia On My Mind"... it goes nicely with a glass of red wine and a salty memory of a simplier time.  "Ginga" flies back that way tomorrow, and I wish we could go there for awhile and pretend things are easier.  "Soon" I keep hoping, we'll be medically cleared to travel.  We'll start with Cannon Beach, OR and graduate to Alabama.  I'm excited to show her the world.

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Tests, Tests, Tests ... results

Today was an incredibly long day.  First, we got word that we could come to our hearing appointment early.  Having to keep Andi awake all morning, so she'd sleep for her hearing test was going to be difficult, so we jumped at the opportunity for the earlier appointment.  The appointment, according to the scheduler, was only slotted for two hours max.  The first test lasted almost five hours... so I was surprised by the two-hour window.  Today, Ginga started with the Bean at 3:45 a.m., that's when the Bean decided she was ready to get up.  I took over at 5:30 or so, and the prep for our day of appt's started around 7:30 a.m.  You know, you have to get three different feeds ready, bring our med's, pack for several hours out on the town... it's quite the production to go anywhere.

The Bean was great staying awake, and we ended up at the hearing test for about four hours.  But, the data was collected.  Andi's hearing out of her left ear... shows 'severe' hearing loss, so she will likely never hear out of her left ear. However, her right ear is more promising and shows that with a hearing aid, she will most likely be able to hear speech sounds.  We've been referred to the next level, which will be appointments with Early Intervention, which will meet with us, do a mold of her ear, and fit her for a hearing aid.  Because babies grow so quickly, she will likely have to be refitted for her ear piece every few months. 

Andi's cold was very troublesome today.  Her nose was clogged and her cough a bit nasty.  During the hearing test, it was pretty disruptive, but after the test -- we raced home and got the suction machine, and that helped out incredibly.  By then is was almost 2:30, so we grabbed a bite to eat, then headed over to the clinic for labs, a prescription pick-up, and a meeting with her pediatrician.  Andi has not put on any weight in the past two weeks, she's 9 lbs 15 oz's, again (it was less last week at the cardiologists'), but her sodium level is better on her bloodwork.  We're going to go back in less than two weeks and check everything again.  If her weight doesn't increase at that point, then we're going to need to reevaluate her feeds with dietary/nutrition.  But, regardless, her Dr. likes the way she looks and thinks all is well.  He was concerned about her getting a cold, but thinks she has handled it rather well.  He's pleased.

Well geez, it's almost midnight... time for more med's.

Learning, Growing... Having Some Fun!

Andi Bean got a new toy today, an activity gym, to inspire her to learn, grow and maybe even have some 'tummy time' to strengthen her neck and arms.  She's been having some fun with it this past hour, and learning that by moving or pulling on some of the gadgets, it causes the music to come on and the turtle to light up.  She's having fun beating the crap out of the gismo hanging closest to her. It's fun to watch this...

I awoke this morning at 7 a.m. to my cell phone ringing.  It was Kaiser telling me that her eye Dr. appointment was canceled because the Dr. was "called into surgery."  We rescheduled for late November.  My response, 'seriously?'   That seems like forever, but, I'm not as concerned with her eye sight at this juncture.  Tomorrow is her hearing test, and that's a big one in my mind.  We have to keep her awake all morning, so that she'll sleep for her hearing test.  It's going to be an interesting day.

The Bean has since decided that she no longer wanted to lay by herself in the gym.  She's going through a phase where she has decided that she wants to be held a lot.  Don't know if it's Ginga's doing, or she's just decided that after four months in the hospital, she just doesn't want to be left alone anymore.  Whatever the Bean wants, she gets.  This will not always be the case, well, maybe...

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Learning to Ask For Help

Help has arrived in the form of the best wicked step-mother ever!  "Ginga" is here to save me for a week.  She's experiencing the multi-layered, round-the-clock responsibility that Andi's medicine and food schedule.  It's exhausting, and I think we owe her a trip to either a day spa or the looney bin to decompress when she escapes this nut-house.  It's been on my list of things to do, and I haven't yet allocated the time, but, I have a few places & people to call to see about getting us some help.  Some professional help.  Andi's current schedule is something we'd feel comfortable leaving with a trained nurse, instead of relying on friends and family.  It's a bit intense and if there was a problem... a nurse would know how to handle.  It's intimidating to any untrained professional.  Ginga is wearing herself out, mostly worrying about what med's when, when to add med's to the food, when to flush med's with water, etc.  It's overwhelming.  But, it's also clear that I can't continue to do this on my own every day.  I'm horrible asking for help, but in this case, I need to get over myself and ask for help this time.  I'm just lucky to have Ginga here to help support me this week. 

Andi's cardiologist said he wants Andi to "grow-out" of her need for her med's and oxygen.  It could be another six months, it could be weeks.  Remember "it depends" and "we shall see".  Tomorrow it's an eye exam, Thursday is her 2nd hearing test and a check-up with her pediatrician.  It's a busy week.  On top of that, the Bean and I have come down with her Daddy's cold despite our efforts to keep it away.

We're racing out the door to go to the Blazers first pre-season game.  Ginga is minding the Bean by herself,.  And we're supposed to go relax.  Oops, I'm late - I gotta bolt. 

Blazer Nerds, Party Of Three!?

This is the first Blazer Fan Fest in six years that we've missed. Six years.  Instead, we watch it on TV, party of three & a pup!  Andi snores, totally uninterested.  When Andi's Dad and I met, we were watching a basketball playoff game.  I was a Sacramento Kings fan, and he was a die-hard Blazer fan.  He converted me through exposure and we were dubbed 'Blazer Nerds' many years ago.  In fact, the way I told him that we were pregnant was to give him a gift of baby Blazer booties.  Sadly, I tried to deliver this gift at 5:30 in the morning... which did not occur, as he begged for more sleep.  But here we are, approaching Andi's first Blazer season.  I think it's time to shop for more gear! 



Dante Cunningham looks lean and mean... mark my words...this kid will be huge!
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"...and you're the sixth man, and this is OUR HOUSE!!!"  Ah, gives me chills.  And here it begins, "Blazer Nerds, party of three!"