4th Birthday Photo Session

4th Birthday Photo Session

Monday, February 28, 2011

A Breakthrough?

Yesterday, Andi spent the day with her Grandma and one of her aunts, while Daddy Bean and I went for a day of skiing -- our first full day off together.  While skiing wasn't a great idea for our colds, it was really good for all of us. One reason we don't get a lot of time-off is because of Andi's g-tube feeds.  Most people aren't comfortable with attaching/detaching the Mic-Key, or programming the pump, or dealing with the glorious stench of leaking Alimentum.  Because of this, it's quite an undertaking for anyone to watch her.  So, yesterday, we figured we'd just ask Grandma to work on her oral feeds, and not deal with feeding through the g-tube.  So, Andi went without her four daytime bolus feeds, and instead, plowed through almost of three containers of food we brought:  pears, green beans and bananas.  Apparently, she puked some bananas, but when we got home that evening, we promptly got out another container of food, and she plowed through most of it!  So, in the course of the day, she ate almost four containers of food.  Probably not enough calories, but... that's HUGE!  It just goes to show that the g-tube is preventing hunger, preventing the natural instinct to feed. Although it does have it's purpose, the g-tube is probably holding Andi back.

I've emailed Andi's pediatrician this update, and we have a late day appointment with him to check her weight.  This is to help us determine if the Reglan is useful or not.

We went out and bought Andi an actual high chair.  Our plan is to start creating the traditional dinnertime ritual, and other meals.  One thing I saw online, was letting the kids experience the food:  play with it, feel it, smell it... so we're going to try to start incorporating all that into her daily food experience.  All in attempt to help entice even more of a breakthrough.

Friday, February 25, 2011

The Standing Activity Circle Of Fun

We haven't done much work today, but, on a whim, we decided to try the standing activity circle of fun.  With some blankets wedged around to help stabilize her, Andi has enjoyed her new toy that has been sitting around collecting dust these past four months or more.  I think this new device, in conjunction with all the others, can only help strengthen her neck and stability -- getting her closer to sitting up on her own.

I shot some photos and couldn't decide which I liked the best -- so here are all my selections:

Thursday, February 24, 2011

Looking To Catch A Break & A Super Sad Farewell

After a restless night of getting up, turning off the home alarm, opening the back door, waiting and waiting, the tossing, turning, standing, shifting, and resitting briefly on the bed -- Andi and I took Maddux to the vet this morning.  Urinalysis showed white blood cells -- evidence of a bladder infection. So, lil' Madder Bean is on antibiotics.  Oh, and chubs magoo is 'overweight' at 99 lbs.  For a dog with horrid arthritis, extra weight is his worst enemy.  However, due to his arthritis, we have been limited to what type and how much exercise he can physically tolerate.  In a perfect world, we would have a heated salt-water pool for Mad to swim in ...chlorine pools suck -- they dry my skin and turn my hair green. In any case, the vet is supposed to call me when they have his blood work results in as well.  Hopefully everything there comes up clean.  My worst fear is Madder Bean getting ill.  I think that would definitely send me way over my tolerance limit, and I'd have to go postal.

So, last night, I was able to read a few blogs of parents who have successfully weened their children off the tube.  One was a g-tube, one a NG tube.  (NG = tube that goes up the nose and down to the stomach. Andi had one of those just prior to getting her g-tube.  Before that, she had an OG (mouth to stomach) tube because her nose was still healing from her choanal atresia surgeries.)  In any case, one family documented their daily experience at the feeding clinic in Austria.  Made me want to go there bad.  Although, I did the currency conversion and I think the trip would cost more than my car did.  Uhm, yeah... no thanks!  However, based on what this one family wrote, it honestly made me feel like we could successfully ween her ourselves.  It didn't seem that complicated, at all.  The hard part would be being patient with her, and waiting for her to get hungry enough to make it happen.  She likes to eat, she just doesn't eat enough....(keep in mind that she's got the g-tube feeding her four times a day for an hour each time, and then overnight for ten hours.)  This family had the g-tube, and the child did not eat at all.  So, we're one-up there. Instantly, they cut this kids feed schedule (same as ours) to one feed by g-tube during the day (when the kid was asleep) and cut it in half at night.  Get the kid to experience hunger.  Surround the kid with different foods and make it fun.  It was very descriptive and I intend to have Daddy Bean read it.  That just wasn't going to happen during the Blazer/Faker game -- and certainly not after when the stupid Faker's won when we should have...

Another website I read last night was a professional site describing the characteristics associated with CHARGE Syndrome.  It was rather illuminating, although a little frightening about some of the difficulties she will face. I still haven't done a lot of research on CHARGE, but, was looking to see what I could find out there about the digestion issues.  I haven't got there yet in the booklet.

In any case, we did a lot of supported sitting up in the vet's office, and Andi seems to be picking up her head more to help herself roll over.  We haven't had the chance to work on food today, but, she did just take her Tylenol by mouth - instead of through the g-tube. I'm seriously hoping this cold miraculously stays out of Andi's lungs.  It's a nasty cold and it's attacking my lungs now.  Her Dad is actually ready to go to the Dr., and he hasn't been to the Dr. in so long that his Dr.'s office no longer exists.  So, hopefully we're spared the tenth level of hell and Andi's lungs are not involved this time.  That would be so nice, because I honestly don't know how she'll do with this deep hacking cough.  Maybe we can all finally catch a break!?
Lastly, we have to say a super sad farewell to our beloved Joel Przybilla & Dante Cunningham.  Two of my favorite Blazers were traded to Charlotte today. Joel is a fierce player who wouldn't take it from anyone; and Dante is fast, smart, and could help on both sides of the court. I still maintain that Dante will go far. It sounds like Joel might retire, which is probably incredibly tough for him since he just fought hard to come back from knee surgeries.  Oh, it's a sad, sad farewell today in Blazerland.

Wednesday, February 23, 2011

Energy Sucking Sickos

Since I moved to Portland in January 1996, I find I get sick a lot here.  Every month during the winter, and every other month in spring, and once during the summer.  Oh yeah, it's a real treat.  One Dr. I saw long ago, suggested perhaps I'm allergic to the mold here.  As much as it rains here, duh...mold.  So, here I am battling my second version of the cold in our house, and sadly, Andi is battling it too.  She's got a stuffy nose and it's apparent she doesn't feel well at all.  This morning, I awoke to her coughing, which turned into gagging, which turned into a river of Alimentum.  Great way to start the day.  Hey, at least she got a bath first thing! And yea, more laundry to do!

I just sent the one week verdict to her Dr. on the Reglan.  I don't think it's working.  She's still leaking, and now seems to be puking once a day.  However, the wound care nurse set us up with some product called stomahesive yesterday, and that seems to be working on absorbing the leak.  However, when I have to change it (every six or so hours), it hurts her when I have to pull it off.  It sticks to her skin, and there are parts of her skin around her tube that are still pretty raw.  Ouch!

I heard back from the Mom who took her kid to Austria for that no-tube clinic.  She gave me a few blogs and groups to read, so we'll do that in all our copious free time.  Probably during the Blazer game tonight...oops. 

In addition to all the fun we've been experiencing, Maddux wanted to go outside about four times throughout the night.  Acting weird.  I need to take him to the vet for a check-up.  It's supposed to snow here today &/or tomorrow, plus, I feel like crap - so he's gonna have to hold on a few days until I can get there.  His vet is near the office, so, it's a good drive away.  Ugh.

Lastly, the gas and power company were kind enough to send out summaries of how our usage compares to our power saving neighbors.  Apparently, we're going straight to hell with an 18% higher usage than any of our green neighbors with rainbows shooting over them in all their glory.  18%.  Yikes.  Wonder how much that would decrease if we weren't doing a gazillion loads of laundry everyday?!  Plus, we're home all day, everyday.  Their figure doesn't really factor that in.  However, it just irritated me that they pointed all that out.  I just have visions of John Candy in Planes, Trains, and Automobiles, where the people are yelling at them, 'you're going the wrong way!' and he ends up honking the horn, and sarcastically waving "Thanks!', as if to say exactly what I feel for that report.

Monday, February 21, 2011

"Back To Life, Back To Reality"

Andi survived her first weekend ever without me, and Daddy Bean did great.  Although, when I returned, both were looking like neither of them felt very good.  But, the Bean had very big smiles for me, and was instantly cozy in my arms.  My girls weekend was a big treat.  College roommates, all with young children, stealing away for some R&R, laughs, and a bit of relief from the responsibilities of life. We went snowshoeing, something I haven't done in years.  Luckily, it was the perfect day for it.

(Trillium Lake - Mt. Hood)

I assumed I'd recoop on sleep, and get really rested while away, however, that was SO not the case.  Throughout the night, I assessed and reassessed my work with Andi, as I honestly did not sleep well without her.  I recommitted to more tummy time, more eager feeds, bumbo chair sitting, etc.  As much as I do, I don't feel I'm getting it done.  I've also asked my friends for help, something that does not come very naturally to me.  As my big sentence when I was young was, "I do it myself!"  So, I've asked them to come over when they can to help feed her, or sit her up... whatever, as I can't seem to allocate enough time to it myself.  So, today is day one, and we're just waiting for her to digest her last feed just a bit more, then we'll work on sitting up in the bumbo, and the last half hour before her next feed with be for tummy time on the wedge & boppy pillow.

The new med's don't seem to be drastically improving the leakage, but it is a little bit better.  We still have a few days to determine its effectiveness, but as of this minute, I'm tending to think there's more of a digestion problem.  It seems that the last ten minutes to an hour before her next feed, she seems to get some stomach ache or cramps of some sort.  I keep watching to see if this occurs every feed or not.  It's hard to say, as we have so many other things going on.  But, I'm trying to really take notice of when it happens.

Tomorrow we go to see the wound care nurse again, and honestly, the skin is still red and raw.  They might want to pouch the tube, I dunno.  All I can say is we can't continue to live like this, it's ridiculous.

It's time for us to go pick up MadderBean from his neighborhood doggie daycare.  He's grown neurotic, and we're hoping a day at daycare will help burn off all that bad energy.  He's acting funny at the sound of Andi crying, her hearing aid whistling, me raising my voice to tell Andi 'No!' (grabbing at her hearing aid, or at her button or Mic-Key), and will run outside and sit in the rain and cold, afraid to stay with us.  Yes, I've actually written Cesar Milan.  I know, I'm a dork.  But, Maddux is the best doggie in the world and I want him happy too. Aah, and so there it goes ... [sing along], 'Back to life, back to re-al-ity.'  (Snap).  Neverending.

Thursday, February 17, 2011

One Step Forward, One Step Back

Well, THAT was shortlived.  We've been sick these past few days, so again, we're confined indoors.  However, we've made some changes in regard to Andi's leaky g-tube.  I found a website the other day about this feeding clinic in Austria I'd heard about through our audiologist.  She has a patients Mom who was also done with the g-tube, and raised money to take her family to this clinic to work with her son.  I found the website and they have online "netcoaching" available.  That's something for us to consider down the road if we can't manage to get her feeding on our own.  So, I shared this link with our pediatrician, to further discuss at our appointment scheduled the next day. To make a long story short, the problem doesn't seem to be functionality with the device, but it would seem that her stomach is not clearing the food quickly enough.  As the more food we put down, the more she leaks.  Therefore, we're trying a new medicine, Reglan.  It helps push the food from her stomach into her small intestine quicker.  [sidenote: I really should have a white medical coat.]  The medicine takes about a week to really tell if it's working or not.  We started it Tuesday night, so, we shall see.  It seems to me that as of this morning, she doesn't seem to be leaking as much, but, we're also sick and not moving around much.  In addition to this new dope, her pediatrician has referred us to a GI Pediatrician at the hospital for "a fresh look."  He'd mentioned in conversation with Andi's Dad something about some kids whom have had heart surgery, sometimes have nerve damage in their stomach.  Although another aspect of CHARGE Syndrome though, can be digestion issues.  So, we'll see what we can figure, and hopefully this medicine will help fix the problem.  It would seem that if it does work, perhaps the Bean will finally start packing on some pounds, as she won't be losing so much in leakage.  And hey, if she could stop leaking the stomach acid that burns her skin, she'd probably hardly ever cry.  Lastly, the discussion has been started that down the road we might try to not feed her for 24-48 hours and then try to feed her.  Although, I think I think this place in Austria offers more support than just 'make her hungry and then feed.'  Will have to come to a decision down the road about participating in that and taking on that expense.  However, in the meantime, I've reached out to the local Mom who took her son there, and hope to get more information from her.  We'll see how it works out, but we're all in agreement that the tube needs to be phased out, quickly.

For those that want to checkout the feeding clinic and their services:

Interesting read when you know our Bean, and the trials and tribulations of her g-tube.

Sunday, February 13, 2011

Saying Goodbye

Andi Bean's great-grandmother, whom she never met, was laid to rest yesterday.  It's more than unfortunate that Andi didn't get to meet her, it's sad.  It got me thinking about all the things we haven't done or don't yet feel comfortable doing, fear keeping us from living fuller, richer lives.  So, we've decided to change directions and start pushing ourselves.  It really started a week or two ago, going out for Indian food as a family.  It's a fairly nice place, and here everyone gave the baby-in-the-carseat an ol' 'uh-oh' double-take when we came in the door.  She was a peach and it all went off so smoothly, that it gave courage to do it again, and again. Yesterday, it was brunch with the girls, then shopping.  Andi experienced her first shoe department, wide-eyed and taking it all in.  Luckily, she was witnessing her auntie in action... a professional shopper.  It was glorious day, although she did not drink her mimosa!

So, in addition to saying a sad goodbye to Andi's great-grandma, we're saying goodbye to fear.  Fear has kept us locked up most of winter, trying to avoid germs and colds, although we spend more time at the Kaiser campus with a bunch of sick people, than we do anywhere else.  It's time to stop hiding from life,  time to grab onto it and chase it down.  Therefore, we will be rocking it around town, going just about whatever we want.  It's time to live and stop hiding.  It's time to say goodbye in more ways than one.  Well, maybe we'll start when the rain stops.

Wednesday, February 9, 2011

Swimming Lessons

Most days, we float around, go about our business and do our thang.  Some days though, we tread water.  We tread water in the deep end and sometimes struggle to keep our heads above the water line. Today was one of those days.  An early start.  One where you keep hitting the snooze button, hoping and aching for more rest.  Andi slept, but I had to get up.  To go anywhere, it's a mass production.  It takes a lot of thought, preparation, time.  By noon, I felt overwhelmed, exhausted and felt myself drowning. Sometimes, this life is much too hard.  The constant juggle.  The pressure for progress.  The hope for more. The desire for simplicity.  The wish for more time.

When I feel myself overcome by life, I've found what alleviates my mind, heals my soul, and relaxes my nerves.  What else, but some pure Bean love & laughter.  (the video didn't turn out...but she was laughing.)  It's like diving into the cool water on a hot summer day and spending the day floating on your back.  Floating with your ears submerged in the water, the world falls away and you're surrounded by peace and quiet.  Comforted by only the sound of your breathing.

Monday, February 7, 2011

A Blazer Bean, with a leaky g-tube [of course!]

Another day, another direction with the leaky g-tube.  We're going to try a g-tube that's a little bit longer.  The latest, greatest, just ain't so great.  It still leaks, still stinks, still enduces colorful monologs.  We're going to try to add "polycrack" (polycose) again to her feed.  It's a carbohydrate that makes her feed higher calorie.  We tried it pre-heart surgery, and her tummy revolted.  Maybe now it will be okay?!  We're going to fatten her feed, so we can reduce the volume.  Maybe then she won't blow her grub out her leaky g-tube.  Today we worked with a combo of neocate/rice cereal and carrots. It seems that carrots give her extra trouble, as we've had some seriously orange clothes where the g-tube leaks.

Tonight, we dressed Andi Bean for the Blazer game.  She was gifted some Blazer gear by friends, and I'm sure you're shocked to read that it is now being stripped off because the shirt is soaked.  **insert eye roll here.**  Hey, at least it's not orange!  YES, the power of positive thinking. HAHHAHAAHA!  In any case, here's a photo of our Blazer Bean.
I wish I could say she is sporting a lil' pot belly, but sadly, that is a washcloth over her button trying to absorb leakage. 

Saturday, February 5, 2011

A Beany Bear

Our Beany Bear was measured and weighed the other day.

Height:  25" (2.90%)
Weight:  12 lb  11.5 oz  (0.12%)

She went in to see her pediatrican to get a smaller g-tube (12French) inserted.  He said he's seen some success getting the hole to close-up around the smaller button, although, no guarantees that will work for our leaky mess.  It's worth a shot...and better than the hands up in surrender we got from the surgeon.  So far, it's still pretty leaky, but... my hope is that the great g-tube God's smile down on us and caulk the damn thing already.

Saturday morning outfit #1... the Bean has a sleepy, 'I don't give a crap' attitude.  She's been upgraded to her six month outfits, which look super cozy having room to grow into them.  The 3-month outfits were getting a little short, as if she couldn't fully straighten her legs.  Now, she has plenty of room and thensome.  Perhaps that freedom will encourage growth?! Although she's still really underweight, she seems to be filling out moreso and as one of her many "auntie's" said, she seems to be growing into her head.  Apparently, her head was huge compared to her lil' body.

(cell phone photo)

We've discovered a few new things lately to make her laugh.  Grabbing onto her thighs, when she's in the mood, of course, sends her rolling with laughter.  It's pretty dang cute. We have much to work on, always.  Like I said to her Dr., life would seemingly be a whole lot easier if we didn't have a big ol' hole in her stomach.  He agreed.  We are so itching to stop using the g-tube and get her to feed using hunger as motivation to make it happen... but... she's not even 13 lbs at eight months... I guess we just have to keep shoving food at her in conjuction with plugging in the mic-E.  Joy...

On a happier note, we are prepping for our first plane trip early April. The Bean will be flying first class to Alabama (whereas we will likely be stowed in the luggage carrier)... and we'll get to spend some time with Poppa B and Ginga.  Andi will get to see the sunshine again! (...although the sun has been shining here a bit... it's ugly grey, grey, grey outside today!)  Although her unkie has already scored her with her first set of golf clubs, the Bean probably needs to be able to stand before using them.  She might get to play with a golf ball though, as it's too big for her dinky lil' mouth. We're dumping the Bean with her g-parents while we go frolick in New Orleans and at the beach.  It will be our first real trip since before we got pregnant. Well before we knew what a g-tube is, or choanal atresia or a/v canal, before we knew that babies can take viagra.  Oh yes... it will be a glorious glimpse of an easier time, when our hearts weren't as full as they are now.  Luckily, we recognize how completely smitten we are with what we have...not everyone has a Bean... let alone a Beany Bear.

Wednesday, February 2, 2011

video snippets

Today, instead of writing, we offer up videos.

Tuesday, February 1, 2011

Another Whinefest

My head hurts and this O'Doul's tonight just ain't cutting it.  Hell to the No!  I feel like all I do lately is complain.  What fun is that!?  Then, there's the obligatory, 'how are you?' questions I get when we go out, and I always wonder how the person would react if I really laid it out on exactly how I'm doing!  HA!

Andi has a new set of products to 'doctor' the skin surrounding the g-tube.  We'll go back in two weeks, and if this current concoction doesn't work, we're going to try something called 'pouching it'.  It's a pouch that we put over the button and that will catch all the leakage. However, after that appointment, at the suggestion of the people we spoke with today, we wrote our group of peeps we work with in regard to her feeds, and shared our milk volcano video.  We're going to try putting in a smaller button, as the way I understand it, there has been some success getting the hole to 'close up' around it.  Tonight, I left the Bean with her Daddy while I ran to the pharmacy to pick up this week's refill.  Apparently, while I was gone, her milk volcano exploded again.  I was asked if I've checked the water in the balloon, (there's a balloon on the inside of her stomach and it is inflated/deflated with water.  That's how it stays or is removed from her stomach.) and I replied that I wasn't really comfortable checking that.  I know exactly how to do it, but when you remove the water, the tube can be pulled out of her stomach and I really don't want to see or experience that again. 

I fed Andi some food earlier today and watched it pour out around the g-tube.  Videotaped that too, but ding-dang... it's time for some cute, playful stuff.  I'm sick of whining about this POS. 

The Beaner sleeps and I've noticed that her clothes are getting too short for her... ahhh...time to switch to the 6 months wardrobe!  YIPPIE! This whinefest is over.