4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, January 31, 2012

A Brand New Bean

The Hearing Aid is still winning the game.  Annoyed, but, too busy to stress about it.

While we just finished a feed, Andi practically insisted on eating and drinking.  She had a good tablespoon or so of hummus, which is rather thick and dry.  Then, she signed her newest sign, "drink".  It's not a perfect sign, but, I speak Bean.  So, I got her a little bit of soy milk and she drank it.  I told her it was milk, and then she started signing, 'milk' and then 'more milk'. 

I realized then and there, this is a brand new Bean.  I mean, she's never been this eager or excited about eating.  I guess no longer puking every other feed, makes eating orally a little more tolerable.  I like it.  I like it a lot.

Whoa!  Andi's requiring a diaper change.  Another perk of these blenderized feeds... more poop!

Monday, January 30, 2012


Sometimes, the responsibilities of having a kid with CHARGE Syndrome, is a bit much.  Although, medically, Andi is doing great, I'm currently playing a wicked game of hide-and-seek right now with her hearing aid.  The hearing aid is winning.  Now, although I have about a year's worth of papers to file, and I tend to leave "piles" around these past few years, I rarely, rarely, lose anything.  So, to have this hearing aid, her 2nd, go missing in our home, is rather weird.  Usually, she only wears it in the living room.  The last time she wore it, it was Saturday afternoon.  I brought her to the bathroom for her bath, and took her back to remove her hearing aid. Then carried her back to her bath.  Now, I can't locate the device anywhere.  I'm gauged my hand trying to shove it down the back of each couch cushion, in search of the device.  I've moved and cleared all the toys out from under then couches, TV stand, recliner.  I have picked up everything, sorted through everything, and still, the game continues.  Yet, I'm not amused.  There are four places I have put the hearing aid when not in use.  On the TV, on the ledge of the kitchen wall, on the table with the diapers, and on a TV tray that we leave on the couch.  Daddy Bean cleaned that up that tray prior to his parents coming to babysit.  Maybe he'll have a clue or two to share.  Daddy Bean is in the ATL this week for a training class. Hotlanta is enjoying mid-60's this week.  I seethe with jealousy.  But, in his absense, I vow to get my piles filed, organized, and maybe I'll even win the battle of hide-&-seek with this damn hearing aid.  Otherwise, I will have to tote myself into our next audiology appointment with my tail between my legs, and admit defeat.  But, if there's anything I've learned from my lil' CHARGER, it's to never give up. So, although responsibilities sometimes suck, we will march onward, upward and fight, fight, fight.  ..."Lil' battery sucking, earwax removing, piece of PLASTIC!!!!"

Thursday, January 26, 2012


Yesterday, we went to get weighed -- to check Andi's progress on the Blenderized Diet.  When the nurse saw it was us buzzing at the door, she said she'd go get Andi's favoritest nurse to weigh her.  One of the benefits of going to the Dr's office often, they know you and know you well. 

In any case, we cheered although Andi cried (fearful of the Dr's office now), as the scale showed her tipping 17 lbs, 1.5 oz's.  I think I did a big ol' happy dance too!  Progress.  On our way home, we stopped off at grocery store for some nasty flea shampoo for Maddux (uhm, ...y-e-a-h...), and some dark chocolate ice cream for Andi.  We were going to celebrate!   ...and we did!  She ate quite a bit of it, with glee!

Now, I've made two recipes using the ice cream, instead of soy milk.  You know how many calories is in just a half a cup of ice cream?  Yeah... you don't want to.  It's funny.  As I try to finally lose the last of the "baby weight" and reducing my own caloric intake, here I am obsessing about getting as many calories packed into the Bean.  It's a rather funny dynamic.  As long as we both see progress, no one will get hurt!  HA!

Tuesday, January 17, 2012

Big Girl, Big Temper

Three & a half full days puke free and counting!  I'm obsessed with calorie counts, figures and amounts.  I love it!  Now, we've just gotta pack on the poundage!!!  Let's hope!  I'm having trouble getting in a full 800 ml...  Our caloric goal for a day is 800-900 calories and our recipes are just over a 1 calorie per ml.  So, I figure if I get 800 in, we're closer to the high-end of the calories.  It's tough to get that fifth bolus in.  Will keep trying.

Andi had what was deemed a 'breath-holding episode' the other night.  She scared the beegeezsus out of me.  She was laying on Daddy Bean, post-feed, and started hitting him in the face.  He held down her arms so she couldn't do that anymore.  There was a weird moment there, and I got up and took her out of his arms, as she was starting to turn grey.  I threw her up on my shoulder, where she farted and couple of times, and started smacking her back, 'breathe, baby! breathe!'  She stopped breathing.  We looked at her and her eyes were rolling back into her head.  Daddy grabbed the phone to dial 9-1-1.  I pounded on her back some more, trying to 'wake' her.  She went limp in my arms.  I freaked.  Daddy Bean freaked.  I threw her on the ground, well, not really 'threw' her - but I put her down to see what the hell....and she awoke and started breathing, crying.  I had Daddy Bean get her g-tube to hook up and vent.  I assumed it was something to do with reflux.  Once she awoke and stopped crying...she was fine.  Back to baseline.  We debated ER and paged her pediatrician.  When he didn't call back within a few minutes, we paged him again.  He called back instantly (totally his style)...and said I left off a number on the first page.  I didn't admit that my hands were shaking when I put the numbers in the first time.  We discussed what happened.  He told us about the breath-holding episodes that some kids do.  It can be brought on by pain or anger.  I was thinking maybe she encountered both.  We looked it up and concluded that is what happened.  We kept a very, very close eye on her for the rest of the night.  It was probably the 2nd scariest things I've encountered as far as Andi's health & well-being.  The 1st being the first time I pulled out the g-tube when the oxygen tank fell on the tube, three days after being released from the hospital from her heart surgery.  That was the worst. 

In addition to all this, she is now signing 'eat', and is eagerly eating orally things presented to her twice a day.  She has had applesauce and mashed cooked carrots.  Our feeding specialist wants her to get regular at eating 5-10 bites twice a day and then do another swallow study.  I will feed her orally whenever she wants, and don't want to limit it if she wants more... Her feeding clinic pediatrician once said he didn't see her doing well eating orally until we figured out how to stop the puking.  So, maybe now she can take off and eat like a big girl.  She can leave the big temper on the shelf though.  May we never experience one of those breath-holding episodes again!!!

Sunday, January 15, 2012

Blenderized Diet - Day #2

For the 2nd day in a row, Andi has been on blenderized diet. For the 2nd day in a row, she has not puked.

I am going to email her dietitian to see how I can increase calories moreso, without pouring a whole bottle of olive oil into her recipe.  Also, her Dad isn't excited about her having milk - so we're going to look into milk alternatives.  I've had some explosions, with the tube getting clogged or the pressure pushing open the medicine port.  Today's shower was due to me needing to wash chicken goo out of my hair.  Massive explosion that shot food across the room.  But, we're learning and getting better at it.  Now, if we could quickly fatten up the girl.  I can feel all her ribs and bones when I pick her up.  I'd like that to change quickly. 

Friday, January 13, 2012

Blenderized, Day 1 and The GI Specialist

Apparently, my "smart phone" is too smart for me, and receives voice mails without telling me.  Embarrassing enough, I received an email from the GI specialist, last night, informing me that the scheduler called me at 10:30 to schedule a last minute appointment at 10 a.m. or  2 p.m. the next day.  I wrote her back and took the 10 a.m., also leaving a voicemail message with the scheduler taking that 10 a.m. appointment.  Today, racing to get us out the door by 9:30, I made time to call the scheduler to confirm that we have that time slot, and she informed me that she called me Wednesday for the Thursday appointment at 10 a.m.  Today is Friday. 

To quote a one-word response my Dad and I use often, "WHATEVER!"

So, I don't understand my phone.  So what?  Don't call me. I hate the phone.  Email, now ... now, that I can handle!  HA!

So we raced up to OHSU today to see the GI specialist whom our pediatrician reached out to Monday to squeeze us in.  She made the time, having met Andi pre-G-Tube #2.  I informed her we were trying the Blenderized Diet, official day #1. Essentially, she said that the food in the B.D. is thicker, and thus, it's harder for Andi to puke it up...  she also said that if we feel that not having Omeprozole (Prilosec) was an issue, to restart it.  I'm giving that time.  Last night, I slept like a baby, as Andi didn't cough or have an issues through the night.  I was stoked.  Daddy Bean remembered last night differently, but, honestly, I've been living a life of light sleeping since pregnancy, I think I would wake if she fussed at all, like I have every single night.  So... we're watching her closely through the weekend.  The GI specialist, however, said to do the B.D. and reweigh in two weeks -- at our pediatrician's office.

Today, up at OHSU, Andi weighed 16 lbs, 12.1 oz's -- which is a full four oz's above where she was on Monday.  Usually, she weighs less at OHSU than she does at the pediatricians office. 

We also got a face-to-face meeting with our favoritest dietitian, Audrey.  We went over a spreadsheet about B.D. I found online and made my own.  She answered a bunch of questions I had about Andi and her needs, including full fat options and water requirements.  It was extremely informative and inspiring.  Audrey got to see Andi stick her finger in her nose, ...and walk. Her lastest achievement that I have yet to get on video.

Today is day one of the full recipes of B.D.  So far, I'm getting really into it.  I know once I get into a routine, it will be rather easy.

For her morning feeds, a recipe looked like this:
2 oz chicken (94 cal)
1/2 apple (32 cal)
1/2 banana (96 cal)
1/2 oatmeal - uncooked (150)
2 TB olive oil (240)
1 cup water
= 612 calories
we estimate it made 350 ml.
612/350 = 1.7 calories per ml

Her afternoon/evening feeds recipe looked like this:
2 oz  beef (130)
1/2 c carrot (35)
1/2 c broccoli (22)
2 TB olive oil (240)
1/2 t salt
1/2 c brown rice (108)
1/2 c whole milk (75)
1 cup water
= 610 calories
vol = 525
610/525 = 1.16 cal/per ml

However, on dinner, I had to add more water to thin it out more so.  So, it ended up less calories than that.  The bad news is I pushed too hard around 2 p.m., trying to "catch up" from being off schedule and she puked A LOT!!!   However, if I space out her meals to 60ml - 80 ml per hour or every hour+... she's keeping it down.  I watch her stomach expand as I plunge the 60ml into her belly.  A couple of tweaks, and I think we can get more bang for our buck.  Or more calories per feed.

Also, plunging in manual, we've gone from her being kept in her highchair for a 45 minute feed, plus 'rest' time of however long she'll tolerate it....to a 60ml feed of maybe five minutes.  So, we're minimizing her downtime spent feeding.  Although, when she's done feeding, I put her into one of her upright contraptions that keep her off her back. 

Anyone interesting in further pursuing the B.D., let me know and I'll email you the spreadsheet.  Information is power. This hasn't yet been deemed the answer, but Audrey said some of her kids truly thrive on B.D. and some don't.  She also said that if Andi wasn't tolerating it, we'd know rather quickly. Today's milk was the one thing I worried about, and so far... it has been a non-issue.  I guessed mixed into a nutritionally full blend... it's less likely to cause a problem, but still, we are trying to be tolerance cautious.  So based on what we've seen so far, she's doing really well.  Just need to make sure she's getting her full caloric needs for the day (800-900)...although, the more she keeps down, the further along we are already! 

Keeping hope alive that we're facing a change of luck!!! 
*please, please, please!*

Thursday, January 12, 2012

Blenderized Diet

So, we've started our initial introduction to the Blenderized Diet.  So far, Andi has been given a blend of chicken + sweet potato + olive oil.  All has been received not only quickly (I'm plunging the mixture in through a 60 ml syringe), but not a drop has come back up.  However, tomorrow, I plan to start a new concoction that will be more calorie conscious and have more variety.  One problem with the blenderized diet from what I've read, is that kiddos usually lose some weight to start, but Andi really doesn't have any to lose, so, I'm on it.   Call me Betty Child (Betty Crocker + Julia Child)... I'm on it and pumped to fatten my beanie!

I've given it some thought and have decided to try to use our food processor rather than our high end blender.  We'll see which one wins the meal-time chore.

I'm also making a grocery list of things to add, based on a great spreadsheet I found on one website.  Am pretty excited about the variety of options available, and hope that this works.  We're so overdue a big, big break!  Please, Please, Please, let this be the break we've been waiting for!!!

Monday, January 9, 2012

Lobbying For Skinny Minny

Andi went to see her pediatrician again this morning. He wanted to get her weight, so then he could start with that information and take it to a pile of people at the hospital, mainly GI, and get the process rolling quicker.  Having to wait until 2/24 is quite a long time for a kid fighting to put on the pounds.  Andi has actually lost weight since her last weigh-in, which was 12/15.  She's now 16 lbs, 8 oz's (she was 10 oz's).  So, we definitely have a problem.  She did not have a great feed day yesterday and she barfed up most of her breakfast.  Nervous about weighing?  I dunno, but, it wasn't fun. 

So... we did labs (a BMP) because I said she seemed dry, and they came out okay.  So, least we know she isn't super dehydrated like she has been in the past.  I've since talked to our pediatrician and he's awaiting more call backs, but the GI specialist we've seen in the hospital- last g-tube, is aware of the problem, asked for a different lab, and is going to try to squeeze Andi in the next couple of days.  YEA!!!  It's pretty cool having a Dr. lobby for you, and "advocating" (most overused word in the medical community -- other than, 'it depends!') on behalf of your child.  It almost brings warm fuzzy feelings of content.  However, there still is a big problem with feeds/digestion.  I've taken to the Facebook page for Charge and have asked others what they've experienced.  Sounds like this is a pretty common problem.  Five of them suggest putting Andi on a blenderized diet -- (insert my old joke about throwing a Burgerville Tillamook Cheeseburger and a chocolate shake in a blender here...)  I will approach the feeding team about this, seriously.

Anyhow, my laptop is still rather angry with me.  I am backing up all my stuff to "the cloud" - as our last external hard-drive seemingly met its death when I dropped it...oops!  It works okay as long as you don't try to do too much at the same time.  However, I've noticed my keyboard is not real happy with the 'd', 'n' or 'm' -- and so if you are reading this and there's a letter missing... that's probably because the keyboard ain't cooperating.  It's annoying.  The IPAD keyboard ain't all that easy & quick to use, otherwise, I'd say ol' Dell can go to Hell... hahahahahhahahaahaha.  It's probably about five years old now, but, I'm trying to save it regardless.  I have to - I don't have the ca$hish to buy a new one.  So, I'm dumping everything on the cloud, and then we're going to get nitty gritty with the ol' Dell.  You know it's bad when I bring my massive laptop into the hospital and the surgery resident with absolutely NO personality, stops trying to fake being human, i.e. (head tilt to the side), 'how are you doing?', and instead interrupts himself, startled, and says, 'whoa! that laptop is massive!'  I secretly rolled up a special finger in his honor.  So, yeah, the beast might be old, but we can't quite put her out to pasture just yet!

So, hopefully soon we'll get further along in our quest to put some serious weight on Bean!  I

Friday, January 6, 2012

Ketchup with The Beanstalk

We've been lacking on the updates for a variety of reasons.  First of all, with our Christmas money, we bought Andi an IPad.  So, we've been a bit awe-struck over the shiny new toy, (...and Andi hasn't seen it much, yet!)  In addition to that, my laptop has been acting out like a two-year old.  It's angry for reasons we haven't quite figured out.  I suspect it's very angry and depressed that we not only bought a shiny new toy, but a Mac product at that...  We are planning to stage an intervention.  Yeah, okay... I don't get out much anymore!  Bad jokes should be overlooked.

Yesterday, we went to see Andi's team of Audiologists, for hearing testing.  Andi was tested both with and without her hearing aid.  She did really well.  ...and I quote, "I have chills" (seeing how well Andi was doing.)  It was such an improvement that they reprogrammed her hearing aid.  They sent us packing with the hearing aid in, and I kid you not, she left it in for just over an hour.  Prior to that, the longest she would leave it in was during a part of Yo Gabba Gabba episode.  She is watching an episode now with dinner and her hearing aid, and the music group just came on and she started clapping her hands and snapping her fingers in the air.  No joke.  The hearing aid is helping!  Yea! 

Late yesterday afternoon, we were called about a referral and to schedule a new patient appointment with pediatric GI.  We were referred to them by our pediatrician last year, but they pushed us to see feeding clinic first.  So, feeding clinic got us a new G-Tube.  And now that we're still having problems with g-tube feeds, GI is willing to see us finally.  So, I got us the first available appointment.  It's on February 24th or so... no joke, nearly two months away.  I let our pediatrician & feeding specialist know... We will be seeing the new dept. chair/head.  I've since bent our pediatricians eye (email) about how ridiculous it is that Andi, a 19 month kiddo that only weighs 16 lbs, isn't shuttled in to see them sooner than two months.  I'm sorry, but a 16 pound, 19 month old, should be alarming, shouldn't it?!  So, we're going back to see him on Tuesday and we're to suspend using Omeprozole (Prilosec).  GREAT ... cuz I just refilled that bottle on Tuesday!!!!  He says he has a plan and wants to do a PH study in a few weeks.  Yippie I wrote... I'm excited about trying to find out why she pukes twice a day, and yet, I'm very worried about incurring more medical bills.  I let my concerns be known.  Hopefully this doesn't cost us a ton, because a new year equates new deductibles and co-pays.  Urgh.  I just paid the hospital bills, don't want more of those, ...ya know?

In any case, Andi has lots of new tricks to show.  I just need to get some good video this weekend!