Couch Potato Bean

My favorites from today's couch sitting photo shoot!

Smiles From The Bumbo Chair

The Bean was able to sit up straight on her own for the most part, and stayed in the bumbo seat for a few minutes.  We'll try again later today.

Pushing A Bean

We've set a plan in motion to tag-team and push the Bean harder.  First of all, we're starting to push her daytime feeds.  We've increased the daytime 1-hour bollus feeds, so we can decrease the night-time rate, and hopefully have less leakage.  So far, we've had some success.  In addition to that change, we're going to work on sitting up -- by doing it.  We're going to work harder on tummy time - either on the boppy, the wedge & boppy, the tummy-time mat or just reclined on a shoulder - which she really prefers.  Lastly, we're going to work more on feeding too, as soon as she can breathe well through her nose.

The cold is stirring in her lungs, as if her lungs are trying to clear themselves.  I hope so.  By holding her up on one of our shoulders, we think that should help her clean those lungs. 

Basically, we need to push her harder, engage and stimulate her as much as possible.  As much as we do work on, I just can't shake the feeling that we should be doing so much more. Why did I just have visions of Rick Moranis from the movie, Parenthood?  Yikes.

This minute, the Bean sleeps.  I guess that's allowed.

Friday Night Life Lessons

So, as I sit here for what seems like my billionth consecutive night couped up in the house, I can't help reflect.  Well, it's late for me on a Friday night, and I've been watching the OWN network... oh, and just for the record, I'm completely sober.  Although I'm completely contented and there's nowhere else I'd rather be, I can't help but sit here and be thankful for the many years I've had where I have just been completely stupid and carefree. My worries were few.  My responsibilities were minimal.  Life was simple.  I wouldn't say I was happier then though, I wasn't.  I was craving structure, craving a family, a home, someone to take care of and someone to always have my back.  I have that now, and although it's harder work than I've ever done -- I'm completely contented sitting here at home with my family.

Earlier tonight, Andi Bean was crying. She was uncomfortable and pushing away the pacie.  Next thing I usually try is to vent the g-tube, thinking maybe she has a ball of air in her tummy giving her grief.  When that didn't work, I was trying to 'doctor' the g-tube -- which means to dry it, powder it, coat it with the special lotion and somehow squeeze a split 2x2 gauze between the button and her skin.  That's very difficult to do when she's pitching a fit because she's basically tightening her stomach and leaving very little room to get the gauze under the button.  Plus, she's usually kicking me, flailing about, and  sometimes swinging at me.  Usually, when a baby cries the Mom instinctively knows to pick the baby up, and often times - that settles the baby.  With me, our situation is so different, that I'm usually trying different fixes before I even consider to pick up the Bean.  Tonight was a perfect example of that.  I tried my checklist of usual fixes, and then when none of them worked, I picked up the Bean and she settled right down.  It reminded me that although our situation is different, the Bean is still a baby - and maybe I should try treating her as such, instead of always trying to 'doctor' her like I do.

Life lessons on a Friday night.  Be stupid and carefree when you can, and love with your heart -- not always your mind.  How deep.  Yes, maybe a little less Oprah and a little more time out of the house.  Well, just as soon as I feel better!!!

for sale: g-tube, used

Anyone want to purchase a used g-tube?  We're pretty much hitting the wall on our love and severe hate relationship with the device.  Today, I shot a little bit of video of her g-tube, showing it leak, the redness and irritation. Sadly, we can't quite capture the smell for our scrapbook.

Andi and I worked on tummytime twice today, but the Bean was not having it at all.  I put her on her activity mat twice. Although she had fun reaching up playing with the toys dangling and kicking the piano at her feet, she would not roll over for me, at all.

She is rather whiney and really just wants to be held, which makes me think she still just doesn't feel well.

I wrote the letter.  Then, I went back and stripped it of all my anger, emotion and colorful descriptions of how nasty we've got it -- and there really isn't much left.  I seem to say the same thing over and over.  Maybe I'll mail it and maybe I'll just file it away.  It's really not that big of a deal, but it pissed me off.

I also put in her hearing aid today and we worked on the words, "No!", "No Touch!" and she even got the scoulding involving both her first name and middle name, which means 'you're in TROUBLE!'  It's going to take some time to learn this one though, as the temptation of yanking the dang thing out is apparently more enticing than a scoulding.  I hope when she's older she doesn't play the card, 'oopsie, I didn't hear you!'  Cuz that is something I would do. 

Love Those Cheeks!

The Bean and I still feel like doo-doo.  Although I'm still steamed over that stupid powder denial, I haven't wasted the energy to deal with it, as there are more important things to do.  We need to work on Bean's torticollis, as she tilts her head to the left.  It had been getting better, but looks like with the holiday's...perhaps we got a bit lax on the therapy - because these photos show it well.  Yes, no holiday's for us!

Here's a photo of the Bean in her new seat, reaching for her feet which she recently discovered.  This seat also serves as her feeding chair, as it has her upright and head supported.

 Here's the Bean with one of her new best friend's, Froggie.  Froggie has a pacifier coming out of his mouth - and gives her something soft to hold onto.

This was shot today, when we tried carrots for the first time.  The bib was a gift from Poppa B and Ginga, as they love those cheeks!

The Bean ate about a half of a container of carrots, but then promptly got fussy.  I vented her g-tube twice, because she seems to swallow a lot of air in her eagerness to grub.  It took an awful long time for her to calm down.  After a short power nap, she regained the energy to fuss some more - so I determined we needed to skip a feed and let her tummy rest.  Due to all this fussiness, the area around her g-tube bled a bit, and is even more irritated and raw, as the stomach acid burns the skin. This ordeal really amplified my desire, in addition to Emily's urging, to respond to the powder denial with graphic pictures and an argument that should win me an award.  Part of me just wants to sass back and give 'em an good ol' 'oh-no-you-didn't', nuh-uh... and verbally bitch slap the idiots.  Yeah, I can hear my Dad now, urging me with his sarcastic one word, 'Chill!'  Enough said.

Well, it's nearing 8 o'clock, think it's time for us to wander down with a book and Froggie. We're pooped.

Whoa... Irritable!

Andi and I are sitting here both completely irritable.  Neither of us feel good and perhaps others should feel our wrath.  Today's mail contained a letter from our insurance company denying us something really petty, yet, I'm so irritable, I need to vent it out before I misplace my irritability.  We've been to the wound care nurse twice, and have another appointment in a few weeks.  (Each appointment has a $20. co-pay, btw.)  They've been helping us with the skin around Andi's g-tube which is horribly, ...guess what, YES... irritated!  It's broken down and they are helping devise concoctions to help remedy that issue.  When we were in the hospital and having the leakage problem and thus, the, yes again, irritation -- a nurse brought us some stoma powder to mix with a lotion and create a barrier.  The wound care nurses we've seen have simply changed the lotions, not the powder.  So, when I asked the wound care nurse about getting more powder I asked if our pediatrician had to order it, and she said she could order it.  So, today's mail contains a letter from some total nincompoop girl whose name is comprised of two first names, whatever!, and she's saying that the stupid stoma powder is not covered.  Let me make it clear, I am far from a cheap person.  I may like to shop at Marshall's, but I am not cheap.  I'd definitely choose to go to Ruth's Chris for a night out over the Outback anytime.  I'm sure the stupid powder is under $10., and that isn't much.  But we all know that Ms. Nincompoop two-first-names nimrod probably doesn't even know was a 'gastrostomy' is... So, I can easily buy the stupid powder from the people we get the feeding supplies from, and we use so little of it ("a dusting on the really, really red parts"), that it's nothing.  But on principle and high irritability I sit here totally annoyed that my supreme health coverage and my nearly multi-million (we may be over it by now?), doesn't qualify for a stupid powder that is prescribed remedy for a stupid 'gastrostomy' (she wrote it out all formal!) ... and is needed because the damn thing leaks so much it's ruining her skin.  Let alone something I've had to make two separate, almost three trips in just to have it tended to. This level of leakage was DEFINITELY not in the brochure.  She's on her fourth outfit as of 5 p.m, third blanket, and despite washing her clothes through the two-rinse cycle -- it often still comes out stinking like the contents of her stomach that leak.  I'm so sick of it I could scream.  I recently got a massage because my back locked up from Bean patrol and deChristmasing the house.  The therapist mentioned one of those clown bags that are weighted at the bottom that you could punch, kick, hit, body slam and it'd still come bouncing back upright.  I could use one of those now, but I seriously doubt that resolve any of this irritability.  No, I don't think it'd help as I glance at this letter again and read the first line, 'This document serves as notice of an adverse benefit determination.'  WTF is that?!  'adverse benefit determination.' I'm sure this is the start of their form letter, but as smart and 'professional' as they're trying to read, they sound pretty dumb to me.  Why don't you talk or write to me like I'm a person, instead of your lawyeristic sounding b.s. that you're trying to sell me.  Corporate America and I have never seen eye to eye, because I don't think you should talk to your customers, clients or anyone like that, 'adverse benefit determination'... come on!!!  Maybe studying journalism got me writing too plain, 'fourth grade reading level' is what I was taught.  But, regardless of my writing style, I think corporate America needs to get back to basics and start talking and listening to the end-consumer, cuz you really come off sounding like a jackass.  And, last I checked miss two-first-names lame-o, I have been married for five years, so that would make me a Mrs. instead of a Ms.  Get a clue missy, because I think I'm about to write you a big ol' sarcastic letter of bitchery in response.  I'm just too stuck in this irritability to shake it off.  **Ooh - insert the psycho laughter here!**  The letter actually has a paragraph on 'Important Information about Your Appeal Rights.'  It's a $10. powder, if that... do I really want to stand on principle tonight?  Probably not.

Lastly, let me just share this tidbit of b.s.,
"Thank you for giving us the opportunity to review your request.  We appreciate your membership and look forward to serving your future health care needs."
I coughed "b.s." throughout reading that standardized line of crap, did you?

I guess I'll go chug some more hot tea and pretend it's a mai-tai and try to find my happy place.  I'd really just like to curl into a ball and sleep for three days, but I don't think the Bean, her leaky g-tube's lameness, and life will allow me that luxury.  No, instead I'll finally get out of my pj's and head down to the ol' KP pharmacy where I spend an awful lot of time, and pick up another refill.  Oh yea!!!

Here's a NON POLITICAL photo to savor... a gift from my wicked step-sister & step-b-i-l, and Andi thought it needed more color.  Hey, I could have added the one where she's fussing to get out of that chair and not looking too happy!  HAHHAA...