Halloween 2010

The Bean tuckered out early, but she was dressed for the greedy lil' kids itching for their candy fix.

This is not a political statement my Alabama (Auburn) friends... it's just a sweatshirt.  ;0)

dragging

Getting up at 4 and spending a few hours in the early a.m. trying to sleep on the couch in between Bean pacie withdrawal (i.e., it falls out of her mouth and makes her whine)... is starting to really zombify me, just in time for Halloween.  Least the timing is right.  This past night we got up every hour for some crying and irritability.  I think I tried to bribe and reason with the Bean, it did not work.  Now that it's nearing working hours, she's settled down and chillin' on her bed. Go figure!

I'm too tired to think, so here are some photos.

Parenting 101

I've been getting feedback from different healthcare professionals & social workers about how impressed they are with me as a parent.  I can't help think that they must see some pretty crappy parents on their home visits.  I mentioned something about that to the most recent complimenter... and she agreed and elaborated on some of the poor parental conditions she's encountered.  So, although that should boost the ego, it doesn't really.  There are things I wish I had more time to work on with our Bean: bottling, sitting upright, tummy time, story-time.  There never seems to be enough hours in the day, even though our day starts at 4:30.
I met with the nurse today whom we might have come help us out, but she just took a job and is only available on Monday's and every other weekend.  I also spoke with the KP social worker and learned that because Andi isn't home-bound, we don't qualify for an in-home health nurse.  Another dead end.  Frustrating.  However, since the Bean has been coming off med's, we're considering lessening our medical requirements.  Pretty soon, we might have to start tapping the street people who sashay down the middle of the street with their shopping cart, swilling a beer.  I think the Bean could be a great influence on them, and hey, least it won't cost us the equivilent of a mortgage payment for them to help us out.  HHAHAA.. didn't I state in the previous paragraph, how I've received a few compliments about my parenting skills?!?  'y-e-a-h, whatevah!'

Tomorrow we have Early Intervention coming to meet us and assess services & therapies Andi will need to enroll in.  Between them and the conference call with the nutritionist, I hope to get some ideas on how we can make the bleachy-chemical-stench formula appeal moreso to the Bean, as she is no longer taking the bottle.  Feeding, balance & hearing... those are obstacles we know we still face. 

I called to have the provider come pick up all the O2 tanks today, including the atomic bomb.  They said they haven't received anything from the Dr., officially stating that they've removed the therapy.  Otherwise, they'd want me to sign a release.  The sarcastic beast inside of me was itching to get out...but, I shot our best Dr. an email and he's already confirmed he'd take care of it.  Yippie!  I've decided I'd better document the supply before it goes buh-bye!  ;0)

The Bean helped me shoot this picture (one-handed).

quick status update

pooped.

Party Tricks & Andi Bean Treats

We're teaching Andi Bean some new tricks 'round here.

snores, chores and big-time bores

Sleepy Bean -- Post Bath-Time

It was too dark in the room, so the shutter speed was insanely slow. 

I kinda like the look though.

The line down her chest is her heart surgery scar.  The two scars above her right arm are where drainage tubes came out.  The marks on the front of her right shoulder is where the central line was in.

All her battle wounds look amazing!

We received a few callbacks today.  There's a state agency that called me back, the 'Inclusive Child Care Program'.  It's a program for people who require a higher level of childcare, and if you qualify, they assist you with a portion of the cost.  Even if I lost my job, we still wouldn't qualify for assistance to help us pay for anything. I've renamed it, the 'Exclusive Child Care Program', as according to them, we're living in the lap of luxury. *insert sarcastic laughter here.*  I totally understand it, but another part of me is annoyed that none of the services in place, thus far, seem to be open and available to help us - because we make more money than deemed allowable. I'm thankful to be on this side of the fence, so I refuse to complain.  However, it's worth putting it out there, so people consider all levels of parenting we're experiencing.  Luckily, we have a great insurance program through my job.  Otherwise, we'd be financially ruined.  The cap on hospitalization stay alone was something that saved our finances.  Can you even imagine?  But don't get me wrong, we're still knee deep in expenses, between my c-section hospital stay and Andi's cap, we're out $3,200.  On top of that, there are all the labs, co-pays, med's, hearing aids, and now, the cost of getting someone here to help us.  If I were to go back to work in the office just two days a week, that would run us about $400. a week. So, although we don't qualify for any financial assistance to help us out, which -- again, I understand and am actually not complaining... I think it's important to point out the financial impact, and exclusivity of services out there to help people, some people.

In any case, another place called me back and they too weren't able to help us.  What they did was something that didn't work for us, and honestly, I don't even remember what exactly... it's been a long day that started at 4 a.m. with a good ol' upchuck on my bed as I laid the Bean down with me - to try to stretch our sleeping schedule out a little bit longer.  By 4:10 we were upstairs getting clean, and my underexercised butt knocked a glass off the coffee table and into a lot of lovely pieces onto the rug.  Yippie, getting out the vacumme cleaner at 4 a.m. is always a treat!  After cleaning that up, I made some coffee while Andi entertained herself by staring at herself in the mirror... as she does every morning, and a good portion of that pot of coffee ended up spilled all over the kitchen counter.  It just was one of THOSE mornings!!! 

The audiology dept. at Doernbecher's called to schedule our appt. to get Andi her hearing aid fitting. 

-->  November 30th.  <--

Yes, November 30th.  That's HOW MANY weeks away?  I vocalized my disapproval, but they're booked up solid.  I put us on the cancelation list, and given our first two hearing tests happened rather quickly - due to cancelations, I'm hopeful we can get her in there lickity split.  I hope so as I'm honestly running out of patience.  Sorry, but when the ENT Dr. told me more than two months ago, 'the sooner we get her hearing, the sooner her brain can start processing sounds.'  I know everything will be fine, but I can't help being impatient to want everything to happen NOW, especially after all she's already been through.  Naturally, you want the best for your kids, and when you have a Bean... you're going to fight to give her everything and thensome, delivered on a silver platter.

So, it was a long, long, l-o-n-g, l-o-o-o-o-o-n-n-g day... the Bean snores and the dishwasher hums.  Andi is going to light up and smile big when she sees Daddy come home. She's very smitten with him, just like most girls are smitten with their Daddy's.  At least we have clean sheets onto which I will likely drool with exhaustion.

Temper Tantrums and Sleep Deprivation

I wonder what it's going to take to get some of the lame-o's to call me back.  Incessant calling like an overexcited teenager calling the cute boy of the week in the days before caller ID!?  I mean, it's ridiculous.  I shouldn't have to call you more than once and I shouldn't have to wait.  **stomping on ground like a two year old having a major tantrum!**  Some progress is made, yet more is still out of reach.  Sunday, we have a lady coming to the house to meet Andi and if all goes well, will likely be helping me out for a few hours a week.  I have no idea how long the home health nurse referral is going to take and how much that is going to cost me, so I figure I should have a few qualified people on board to help us out regardless of things in the works.

Getting used to the Bean not being tethered to the O2 tank is taking some time to get used to.  It's bizarre.  For so many months now, I have had to give thought to every time I've picked Andi up.  "where's the g-tube?", "is it plugged in?", "grab the tank" or "turn off the tank and disconnect, so we can plug her in downstairs".  I mean, there's always been something to consider. So, here she is no longer tied to the tank, and in the past few days she's wanted to be held a lot and at times, will not accept being put down -- that only made her more angry.  I had to give it actual thought as I was trying to fix dinner and deal with a meltdown at the same time... 'oh, yeah, I can actually take her into the kitchen with me now!'  It's been quite the joyous revelation.  Now if I could spend the time to figure out the Moby we bought so I can carry her around in that in the house.  The other carrier is great, but she 'cooks' in it, due to the newborn carrier inside the carrier... she gets really warm very quickly.  I consulted the manual and she needs that carrier until she can hold her own head.

I've been trying to reintroduce the bottle to our Bean.  When she had her cold, I did not allow the bottle as it'd promote mucous. Well, since that cold, we've also changed her off the Neocate (amino acids) to all Alimentum (partial milk protein).  The new formula smells like bleach and chemicals.  I can't stand the smell of it!  Yes, I have a "bionic nose" but I can't imagine that nasty smelling junk tastes very good.  So far, the Bean hasn't shown any interest in the bottle, which is a major step backward.  I will keep trying, but today found her asleep most of the times I'd bottle feed her, like now.  The Bean has had a very restful day.  She's snoring and chilling out on her lil' bed on the couch.  I however, haven't had any shut-eye and hope that our schedules do not conflict tonight, otherwise, that could be nasty.  Daddy is on a work trip -- and left earlier than early this morning, so I'm flying solo... and Maddux doesn't seem very interested in babysitting, so, hopefully, she'll sleep for me tonight.  Puh-lease, Puh-lease, Puh-lease lil' Bean... help yo' overtired Momma out!  **fingers crossed**

Chatty Cathy video and the pretty sweater fashion show

Chatty Cathy in her crib today, under her mobile, and serenaded by Giraffee.

Prior to seeing Dr. C. - just before she got taken off her O2.

Beautiful knit sweater by "Tobe the magnificiant!"

Andi today!  Beautiful sweater sent by Linda O! 

Andi-Bean Land

Another busy, but semi-productive day in Andi Bean land.  First, we went for our formality appt. with the ENT Dr. to get her hearing aid referral. For us, a total waste of time and a stupid Oregon law, as all kids under 18 have to see an ENT Dr. and have to get that referral to get hearing aids.  But, once he met with us, we were in/out, and on our way back home for our next appt.  The community nurse from the county health dept. came by to meet us.  She evaluates us and acts as a sort of social worker that puts us in touch with different services from which we might benefit.  She gave me the number of two additional places to call, one of which, if we qualify, might be willing to help us pay for Andi's respite care.  It's yet another call, another waiting game of getting in the system, and another evalation, I'm sure. More hoops, but one that might be worth being a circus performer for, if we qualify.  We received a call back from Developmental Disabilities Service and have someone coming out at the end of November to evaluate us, our situation, and see if we qualify for assistance with her care.  This morning, we also ran into the pediatric social worker at Kaiser we met with yesterday, and she said a referral has been submitted for home health nurse.  I guess I'm awaiting another phone call.  The ENT Dr. said we will be referred back to OHSU for the hearing aid, which is different from where we were told we'd get the hearing aids from.  Is your head spinning?  I know mine is!?!  Trying to keep all these people, phone numbers, who does what, and who is helping us with what is a big ol' chore.  I need to spend a rainy Saturday afternoon organizing all this, in all my copious free time that is...  But, I think one way or other, help is soon on its way!  I still have about four people to call, including the friend of a friend recent graduate from OHSU...

The nurse today said we need to work on balancing Andi's time on each side.  Andi spends most of her time on her back or on her right side.  Because of the g-tube, where the stomach is and the direction it processes food, Andi spends a majority on time on her right side, especially when feeding.  When she lays on her left, the g-tube leaks moreso.  Leakage means less calories for the Bean.  Obviously, less calories means an underweight Bean.  So, we need to work on getting Andi to spend time on both sides -- so she doesn't favor one side over the other, and we need to work on getting her to spend time on her back - concentrating straight ahead of her, centering herself.  When I lay her in her crib - with the mobile above her head, she rolls to one side.  Oh yeah, she's starting to roll -- afterall, Butterball's roll.  So, we have some additional things to work on.  She also suggested I make sure that Andi is medically cleared for tummy time.  Considering her recovery from heart surgery, and the g-tube, she suggested I make sure it's okay that she starts working on it.  She's also not yet strong enough for the bumbo chair we bought, because she can't yet hold her head on her own.  So, I've sent her Dr. an email making sure tummy time is okay for the bean, and also get the ok for us to finally go to the beach.  I've been promising Andi a trip to the beach since her first surgery, and we haven't been out of town since early this year, so I think we're due for a road trip and a change of scenery. 

Butterball ... and thensome!

Our butterball weighed in today at 10 POUNDS, 4.5 OUNCES!!!  Double digits, FINALLY!!!  :0)  She's now 24" long, and her head size increased too.  She's also been taken OFF her OXYGEN, and one of her diuretics!!!  "This is by far the best I've ever seen her." (Dr. C.)  Today has been the BEST day!  Dietary wants us to slowly increase her feeds too! 

Andi's cute face, just got 10x's cuter without that stupid oxygen cannula!

Tomorrow we have to go see a ENT Dr. to get the referral for the hearing aid.  I was told that the hearing aid costs $4000. and my portion of that is $800.  Not bad, considering, but still... OUCH!!!  I'll have to walk out back and yank a few more bills off the ol' money tree.  Yikes.  The community nurse from the county health dept. is coming to see us tomorrow too.  We're hoping she brings us news of help on the way... but, in the meantime, I have a name & number of a friend of a friend whom might entertain working for the Bean. 

Andi's Dad said it earlier, ...'now we can go to the beach!'... so I think in a few weeks we'll be spending the weekend at the beach. YIPPIE!  Just hope this string of good luck continues.  Oddly enough, the social worker at the Dr's office I met with, in conjunction with her Dr., told me I had a cricket on my back.  She flicked it off and I got to see she wasn't joking.  I made the joke about bringing my pets with me wherever I go, and am just hoping that in some culture, having a cricket on you is a sign of good luck.  We could use all the good luck we can muster, and will savior it with glee.

YIPPIE!!!
;0)

Simplifying The Complicated Life

Today I made great progress in my collection of places to call, although I sit here awaiting many call backs.  So far, no real progress has been made in my quest for help.  Next week, a social worker with Multnomah County Health Dept. is coming to meet Andi.  She's one person that gave me about six numbers to call.  It is my hope that her coming here will help me further in finding a solution for us. We're also seeing her pediatrician and the insurance company's social worker next week. The following week, Early Intervention is coming with about four specialists.  Between that and a few people I hope to hear back from, something has got to work out for us.  Hopefully soon we can get working on her hearing aid too.  Getting kinda tired of playing the waiting game and want to move forward.  It just seems that time is critical and sitting here doing nothing is not working for me.  I want more, and I want it quicker.

One place I called is a caregiver agency and the mostly work with the elderly, but do work with kids.  They aren't professional medically trained people, but 'take classes.'  She said they run about $18-20. a hour, whereas, according to this lady, a nurse would cost $50-60. an hour.  She gave me yet another number of a place to call to see if they could help with the cost.  Therefore, we will keep digging.  It must be said that all of this is INSANE!

While working, I've had the TV on in the background  The movie Three Men and A Baby was on earlier.  Now that I've experienced it myself, their first day with the baby and that whole first diaper scene cracked me up!!!  Especially when the diaper fell off and the baby pees.  Absolutely classic.

Tonight is family night.  I'm  making dinner, which is rather therapeutic to me.  Especially since I like to take a weight-watchers recipe and make it fatty.  Frankly, it's yummier that way!  *silently laughing, knowing Lisa will laugh out loud, although visions of my former trainer shaking his head in disapproval frightens me!*  We're going to watch a speck of TV and play Wii games... in addition to entertaining the Bean with books and her activity mat.  Wow, how life has changed for us.  But, I find myself looking forward to it with pride.  Our lives are complicated and stressful, so a simple night at home as a family is the best gift we can award ourselves.

Growing A Butter Bean

This first picture was shot within her first week here.  We were still at St. Vincent's - so it was within her first six days of life.  We didn't know she had choanal atresia and needed surgery on her nose to open it from blockage.  She was fed through an OG tube at that time and the scab under her nose was a burn from the oxygen tube.



Week 1




Almost 20 Weeks

 



Phone Calls Galore

Wonder why I never call you?  I hate the phone.  Being in customer service since I was 16, I burnt out on the phone long ago.  So, in between feeds, meds, diaper changes, calming, work, and critiquing Nate Burkus's outfit du jour, I am supposed to find time to call about eight different places to find out if they offer services that can help us.  We're trying to get into the system.  That's a major PITA.

The Bean is doing well.  I didn't give her any gas med's today and she was a lot less fussy today, surprisingly.  We also moved to twice a day doses of not only Ativan, but Methadone.  By this time next week, we'll be off those two controlled substances.  Today, we sat up on the couch (sitting in the crevasse), we had unproductive tummy time on the Boppy pillow, and we laid on the activity gym with the piano at her feet which she absolutely loved.  She actually cooed, attempted to laugh, and stared at her fur-brother with amazement.  My plan is to do this several times a day to build up her strength and stamina.

We have our work cut out for us.  Hopefully all my phone calls will enable us to find help to give me a break, maybe give me a bit of a life outside of being nurse Mom.  They keep throwing the words 'respite care' around and when I google that, I don't like what I read.  I will try to figure out what will work best for us, for the Bean.  It's going to take time to figure this out.  It's going to be a chore, but well worth the effort, if it produces results.

A Few October Photos

Hanging With Ginga!

I'm digging my new Peter Rabbit outfit from my great Uncle Pete & Nancy.  It's still a bit big, but I dig it.

Peter Rabbit booties

WHAZZUP!!

Working On A System

I'm avoiding my work project for a moment... so I can update the blog.  I actually googled 'bumbo seat' and think I have one that was passed-down to me, I just didn't know what it was.  I will try that and tummy time as well -- later today after this feed digests, but before the next one. I have to take the mic-e (the g-tube's actual tube) out, and so she'll almost have a flat tummy that won't mess her g-tube up moreso, I hope.  Thanks for the suggestions ladies!!!  ;0) 

This morning we dropped Maddux off at the daycare by my house.  I worry about his elbows, as they have him playing fetch all day.  His arthritis has been bothering him lately... time to step it up on his etodolac (anti-inflammatories).  Yes, the dog has med's too, yea!  Hopefully he's having lots of fun!  It's sunny out, so Andi and I are going to walk down there after 5 and go "pick him up".  Should be interesting.

This morning, we also had to run to the Kaiser pharmacy again because two of Andi's med's were needing to be filled.  I figured out a new method, throwing the smallest O2 tank in a small sports backpack, and straping her in her front-loaded carrier... threw the purse over a shoulder, and we took off... it worked out pretty well for the short trip.  Then I had to throw her back in the truck, well, not throw her, but delicately place her in her carseat...hahhaa... and then since we were out, we decided to hit up the grocery store for one small bag's worth of goods.  Again, I strapped the O2 tank on my back.  Strapped the Bean to the front.  Threw my super cute, but not very handy purse somewhat over my shoulder, and luckily had the forethought to grab a canvas bag to pack the groceries in, as our local store is only doing paper bags and they have no handles.  Talk about having your hands full... I would have to use a cart and ewh, I hate using the cart.

So, we did it.  We raced back home and got the bean's lunch going about a 1/2 hour late, and now that she has some food going into the belly, she's not so displeased with me.  Apparently, the Bean doesn't like to wait... hmmm... wonder where she got that from?!  HA!  These little trips will hopefully give me more confidence to do bigger trips, like tackling Costco.  Well, that might be a bit too ambitious, but least I know we can handle the pharmacy and the grocery store for a short period out.

Breaktime is over... must get back to the work project, especially now that the Bean is on her way back into another snorefest.  One thing she wouldn't let me enjoy early this morning.  *insert pouty face here.*  Maybe I should start going to bed at 7 p.m., so when she's ready to get up at 4, I can at least pry my eyes open.  Soon, we will be done with 2/3 of the midnight medicines.  Maybe then we can reconfigure the med schedule so I can snore for a few more hours disruption free.  Okay, less dreaming, more workie-work.  Yikes, I think I require more coffee first.

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. 
;0)

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.

;0)

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...

;0)

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!"