Ding Dong, The G-Tube Is Gone!!!!

Yesterday, we awoke and raced around prepping for our big-time appointment.  I threw Andi, well, not really 'threw' her, into the tub for what I thought might be her last bath for awhile.  We got cleaned up and out the door.  We stopped at the grocery store to pick up some cake, a balloon and party-gifts for the Dr. & nurse.  We raced to our appointment and by this time, Andi was pretty upset.  She was whiny, clingy and crying.  She made me wonder if the previous nights' dinner was upsetting her tummy.  So, by the time we got checked in and awaiting our turn at suite 1, Andi was pretty agitated.  She had been crying, turning her cheeks & eyes red.  Maybe my enthusiasm was a bit too much for her, I don't know.  I tried my best to secure a great mood of celebration, but, that is not what we got, at all.

The nurse, whom we adore, is 36 weeks pregnant with her second child.  She has told us on numerous occasions that the one thing she was looking forward to all day was seeing Andi.  She is a huge fan of Andi Bean, and has even shown up with the pediatrician to see Andi off to one of her seven surgeries.  Although, I can't remember which one.  I think it was #5, which was sealing up the leaky g-tube, putting in a central line for TPN, blood draws and med's - while we waited a good week for the stomach to heal.  Andi fell asleep in her arms, which is how we saw her off to that surgery.  Precious. So, we brought her a really small baby gift.  She's having a boy, and so I found a dinosaur themed outfit, there's a dinosaur on the butt of the pants, and the onesie says, 'My Momma Rocks' or something like that.  That spoke to me, because she's been an amazing friend to Andi and me.  We also brought cupcakes.  They were ugly in a thick green frosting, but on top of each cupcake was a Mickey Mouse ring, which spoke to me.  Andi's becoming more fond of Mickey Mouse.  I figured the ring might be a good distraction.  So, Andi is crying for the nurse, although she'd take breaks from the wailing to entertain something the nurse had to say.  Then, the Dr. peeks in and says he'll be a minute.  "No problem!"  I go back to my constant in the pediatricians' office, calming a Bean.  We sing songs, quiz about anything, and even play a lame game of 'pretty baby in the mirror!'.  She likes to see herself in the mirror and sometimes, that really squashes a bad mood.  The pediatrician comes back in and makes a joke about me not wanting to take out the g-tube that day.  I don't even think I laughed at all, but was still in celebratory mode, despite Andi's bad mood.  He reminded me that I could have done this myself.  I agreed and said, 'yeah, but I wanted the hole symbolism of doing it here with you guys', as we were FINALLY closing a VERY long chapter.  It seemed only right to do it together with them.  I can't even count how many times I went to appointments just about the g-tube, whether it was the leak, the puking, the acid-burnt skin, etc.  It's been too many to count!  After he took out the g-tube, he put a little silver nitrate on the hole to help stimulate it to close.  Taking out a g-tube is nothing more than using a special syringe, attaching it to the balloon port, and drawing the water out of the balloon.  Then it slides out.  It's pretty dang simple, honestly.  It's gross, but it's simple. 

So, here's a before/after of the g-tube removal.  Again, Andi's only crying because she was in her pediatrician's office and she was probably pretty sick of my super-hyper, over-the-top enthusiasm cheering on this moment...

Now we just have to hope the hole closes up on its own.  We have six weeks to watch for that.  If it doesn't close, then they will have to go in and surgically close it.  Apparently, it's a pretty intricate surgery and will require a few nights stay in the hospital.  I interrupted him when he was telling me about it, because honestly, I thought I heard him say $1500., which is what I told him.  As he started to continue about the hospitalization, I repeated, 'all I can hear you say is $1500.'  This is said despite the fact that he didn't say anything about cost.  That's just what I heard.  I am probably a little too vocal about cost, but I don't care.

So far, we haven't really had much leakage, not like the first g-tube.  I have kept gauze on it and when I change it, the secretions are minimal.  The Dr. said I could give her a bath whenever.  He actually encouraged it saying that it would be good to help with healing. 

This morning we went to observe Andi's future preschool.  Andi is going to go to a hearing-impaired preschool when she turns three. We got to see how the kids come in on the bus, line up, march to class and the routine of their day.  It was really super cool and I'm anxious to get her started.  I know an environment like this is exactly what Andi needs to help her  take off.  We have our Early Intervention evaluation to come up with her game plan for ages 3-5.  So, it's likely Andi will go to preschool four days a week, from 8:30 - 11 a.m.  It might start right after her birthday, for two weeks, or we might have to wait until July.  I am hoping we can get those two extra weeks before they go on break, because I know Andi... she is going to grow leaps and bounds being surrounded by other kids, seeing what they do, and it will challenge her in ways I cannot.  I'm super thrilled at these new chapters lurking before us. Beyond thrilled!

Catching Up & Making Plans!

So much going on and no writing about it... uhmmm, that's lame!

First of all, we've started a new schedule in our household.  We, now including Andi, are all getting up by 6:30 a.m., trying to fix her daily fight against the nap.  It's seemingly working better, although not every day.  She goes down for a nap at 1 p.m.-ish, and then back down for the night at 8 p.m., if we're lucky.  I'm trying to create more structure and activities, but dang, some days I just stink at it.  Ideally, I'd be up in her face all the time engaging her in activities.  Playing with the play-dough, coloring, reading books.  More often than not, I fail.  It's my goal to work at that more so, and not have her just sit with the IPad while I get my work done. 

We went to PT yesterday, and that was great.  However, not because of the appointment, but the time we killed on campus prior to the appointment. I brought her walker with us and made use of the open space that we do not have at home.  I carried Andi and her walker across the parking lot.  From there, we stopped off at the mailbox to mail a few items that have been riding around in my truck for a week, because I can't seem to make a stop at our neighborhood post-office.  Then, I placed her in front of her walker and she made the long walk (maybe 75 yards, ...as I think it was a partial 9-iron shot, and that's how I gauge distance... my rusty golf game!) to the building of the day.  Then, once inside and on the correct floor, we walked the long hallways and to the play table, where we normally wait for our therapists.  We still had some extra time, so I encouraged her to walk with me down the hallway to and from the bathroom, which she did!  It was AWESOME!!!  It gave me confidence to take her "mall walking" whenever we can make it happen, so she can really stretch her legs and improve her strength and her own confidence to walk.  Now, it's just a matter of when!?  But, that's my new goal and I hope to "dazzle" our PT next month when we meet with her again.  Andi was tired during her PT appointment, but the therapist was impressed with her improved strength and determination.

Today, we went up to OHSU to meet with their Audiology team.  I think I saw Andi's first ENT surgeon walking through the waiting area, but wasn't positive it was him -- as usually, we saw him in scrubs and a hat.  I wasn't sure he'd remember us, although I've sent him cards with updates, and even brought him a banana bread two years ago.  He might not remember the cards, but the banana bread was received with much enthusiasm!  So, anyway, we were referred to see the OHSU Audiology people to start the process of getting Andi her very first hearing aid that we'll own.  I told them I was in no particular hurry to order it since I'm in dire need of a new roof, and the nice people at Columbia Regional said I could continue with the loaner awhile longer.  We agreed on early June.  We got a new ear mold done, ordered our color battery ("champagne") and her ear mold will be pink glitter.  For those of us that knew me two years and seven months ago, stop laughing... yes, "we" do pink now.  Whatevah!  After what we've been through, I realized that life NEEDS more color, and although I used to HATE, I mean, H-A-T-E the color pink and all it's "pretty girl" connotations, and how little girls have to wear pink and boys wear blue... well, all that anger and animosity has fallen away because, well, look at her and what she's tackled.  Yep, life needs more color.  After we returned home and into the second hour of Andi's refusal to take a nap (a fight to which she eventually succumbed), my phone rings and it's the Audiologist assistant calling to schedule our fitting and follow-up.  She said that it turns out that our out-of-pocket portion is only $200., and not $400., so we scheduled the fitting for April and the follow-up for May.  Thank goodness, yet again, for our good insurance! Although, I did receive my latest Kaiser bill wanting $550. for past services/co-pays.  Part of that bill is our co-pay on her T&A last year, and this years' out-of-pocket deductible fun.  Y-e-a-h.  So, win some, lose some, eh?

Hopefully, I'm making sense.  I'm completely distracted by Daddy Bean loudly singing (I'm downstairs, while they are upstairs!) 'The Alphabet Song' while pounding on Andi's piano.  It's completely adorable.  [Don't Tell On Me For Telling!!!]  It's my "night off!" and since I'm trying not to spend money, on a chronic diet, and am staying away from "The Jesus Juice"... wowza, I've sequestered myself downstairs for a few minutes "away!"  Tis the life, eh?  I'm sure many are jealous of this glamorous life!!!!   ...Seriously, I'm lucky I can sneak away... not everyone gets afforded that opportunity! *Thankful!*

Tomorrow, OT is coming to our house for our almost weekly appointment.  I hope to steal away some "mall walking" time and some pool time tomorrow.  It's tough to carve out hours for all this, but, if I can do at least one... I'll consider it a successful day.

Now we've moved onto a special rendition of "Hey Jude"... 'nah, nah, nah, nah, nah, nah, nah ... Hey Cub!'  ...LOL!!!

This evening we did a 'FaceTime' session with Poppa B & Ginga.  Andi took one look at my Dad, she said & signed "ice cream".  Totally cracks me up.  She has words that she associates with certain people.  With Poppa:  ice cream; Ginga: bubble bath.  I'll have to continue to think of what else she does.  If someone taught her something or did something with her a lot... that's their word.  It's pretty cute. 


Two weeks ago, we met our OT, and PT consult, at a place called Play Date PDX.  This place was a little kids paradise.  Jungle gym for toddlers, super fast slides, and all sorts of fun.  They serve food and even adult beverages there, so Real Housewives of Portland can go get their chardonnay on, while the kids try not to get bloody noses racing down the slide.  In any case, it was awesome.  Andi was hungry, as we'd just come from feeding/speech appointment.  So, I got her a plate of cheeseburger sliders, cucumber & hummus, and chocolate milk.  She did not like the sliders, but instead preferred the cucumber & hummus.  Yes Dad, your grand-daughter really likes hummus!  :)  I laughed and told the therapists, 'no wonder my kid won't put on weight... she prefers vegetables!'  Daddy Bean said she takes after him.  I helped her with those sliders... and wonder why I can't lose a pound!!!?!?  oops.  Anyhow, the place was super cool.  We hit it just as most people had left for nap-time. Now that we're trying to get on everyone else's schedule, that hour won't work for us either anymore, but, I really dug that it wasn't too crowded and thus, overwhelming for her on her first visit. The PT consult (a quarterly bonus from Early Intervention), hadn't seen Andi in quite awhile as she's been on maternity leave.  She was BLOWN AWAY by how much Andi has changed and grown.  She was seriously impressed.  It's SO nice to get geniuine feedback from professionals like that!

While I've hidden down here long enough.  I've rambled on and on... so, may I remember not to go so long without an update again.


13 days until the g-tube is removed!

PROcrastinating...

I just caught myself totally procrastinating my work project.  It was pathetic.  I uploaded a few titles, then shopped for flights on Hotwire - fantasizing about rescheduling our girl's weekend get-away (that the cheapo airline canceled all flights to our destination!)  Then I added one or two more, yawned, and then found myself distracted by something else.  I'm super duper tired and I find myself PRO-crastinating, cuz I'm a "pro" at it! 

Daddy Bean returns tonight from a two-night work trip.  Andi has been a bit of a handful, and I'm rather tired.  Luckily, she went down today for a nap on her own, so I'm thankful for a bit of reprieve from Mommyhood. 

I have SO much to do, and the yawns are pretty constant.  I think it's time to fire up a cup of coffee so I can better utilize my "quiet" time!



...29 more days!!!  YIPPIE!!!!

A Date Has Been Set

3/11/13, we are returning to Andi's pediatrician for the official g-tube removal.  We are going to pull it and he thinks it will close-up on its own.  There might be a bit of leakage, but... hopefully it will close up quickly.  Her weight is still pretty low, but, it will have been three months that she's been completely orally fed, and they feel that's enough time. However, if I really wanted it pulled today - he probably would've done it.  I was lavished with praise at how well she's doing, which was really cool to hear from a medical professional. 

Andi has her third sickness of the year.  Yeah, it's only February 11th.  She has another cold.  We think she keeps getting germs from the Kid's Club at the gym, or at the hearing impaired playgroup.  Those are the only two places I can think of where she is exposed to different things.  I use hand-sanitizer after each session, but obviously, it's not working for us.  We also are going to start forcing a nap during the day.  She's been in her bed for an hour, and is still having a party.  Now I will take her downstairs and cuddle her, which usually settles her into slumber.  It's just a PITA to do that, and it doesn't always work.  But, I have many, many hours of work to do and a personal To-Do list that is a mile long, and a sick kid - therefore, it must happen.

So, thirty days and I have one less thing that really keeps me in a state of worry, i.e. it getting pulled out or caught on something, or kids teasing her.  I still need to get her weight up, that's still lagging, but we're about to try this new high-calorie pudding recipe.  If it works, a 1/2 cup of it is around 550 calories, that's almost 1/2 her daily need.  So, we'll see if we can get this to help.  I bought the stuff at the high-end ($$$) market because it was convenient, and I wanted to get a build-your-own salad.  So, I bought the ingredients, I went for the "organic" crap and I think I bought the wrong type of gelatin.  We'll see.  Needless to say, I spent my whole week's grocery budget on this one trip.  Oops. 

Andi's vitals @ 32 months:

Height:  2' 9" (1.14%)
Weight:  21 lb, 2 oz (0.04%)  --> she did not eat much this morning prior to weigh-in
Head Circumference:  17.99"  (4.38%)

(sing-along)
It's nap-time
nap-time.
Time to force a nap...
Time to force a nap...

ugh.  Here we go, wish me luck!

Reality Checks and Random Thoughts...

This morning, my CHARGE Facebook family informed me that a two-month old CHARGEr passed away.  There have been quite a few deaths lately and it breaks my heart.  It's not that difficult for me to remember the "dark days" when we simply didn't know what we were dealing with, and at what level.  The days of "it depends..."  I honestly sat here as the tears fell down my face and onto my lap. The emotions conjured were such as if I knew the family.  I don't.  But, I've been through a similar fight and although my outcome has been different, I can't help grieve as every little CHARGEr is a piece of me.  He was a part of our group, our community.  I ache for the family. 

I'm not a religious person, so it feels a bit odd for me to offer prayers.  I usually 'send my best', 'all my good energy', 'my thoughts are with you'.  I haven't quite figured out what to say, although I know there's really no right answer - I just know it's important to say SOMETHING!  I never understood why we say, 'I'm so sorry for your loss.'  When really, when something like this happens, it's ALL of OUR loss.  It's our loss that we'll never see that kid blow the hair back on the Dr's and specialists.  We don't get to watch that kid overcome obstacles, hurdles, and defy the odds.  We don't get to watch him blossom, grow and develop on his timeline.  It's all of our loss.  On the other hand, I can't help grieve a grief so deep for the parents.  I think a lot of that stems from what we've been through and blood curdling cries I've heard come from deep in my soul.  The trauma is still there.  The PTSD lingers.  The ache so deep that it only surfaces when times are really hard, or emotions are stirred up.

It's tough.  It's really, really tough. 


On the other hand, choking down some of these copays is tough.  I went to PT today and they did ask me for $240., to which I replied, "I'm prepared to give you $20."   I'd rather pay $30. a co-pay then have to cough up so many out-of-pocket expenses at the beginning of the year.  I mean, that's insane that they think that's easy for us to do.  Luckily, they are willing to set-up a payment plan. Yet, I've gone from seeing PT twice a month to once a month.  I simply can't afford it.   I don't mean to whine about expenses as much as I do, but, it's part of our experience, our lives, and therefore, I think it's imperitive to include in the blog. 

On the note of PT, Andi didn't do as well as she has been on the standing/walking.  Since enduring stomach flu, she has seemingly lost a lot of her strength and control.  We are going to work on following-up on the Hippotherapy, as well as getting her back into the swimming pool down the street.  Hopefully, the water is warmer this time of year, and she has more fat cells to keep her warm.  (Last time her lips turned a shade of blue). 

We have someone coming Tuesday night to bid our new roof.  I hope this doesn't turn into what happened last time we had a bid.  It was like buying a used car.  Where you get the handwritten offer and it's slid across the table.  You review it, scratch it out and slide a revised offer on the table.  It's about as scummy as one can get, especially after you've divulged how buried in medical expenses you are... scummy!  We have a referral from our trusted friend, but I thought it might behouve us to get a few bids, and get an idea of what we're needing to save. Please, don't let this be a colossal waste of my time, again.  I will be very angry if it is.

My massage last night cost me $20. and although it was worth it, it wasn't anywhere near one my best massages.  Early in I had to ask the man if he was mad at me because his pressure was so much I thought I might end up with a broken rib or two.  Luckily I didn't talk much, so I was able to be quiet and try to appreciate it, but... it just wasn't that great.  Oh well, maybe if I plan ahead I can choose who I see and go get something totally therapeutic & rejuvenating.  I tried to schedule with my favorite, but she's too busy with other jobs like work and school... bah!!!!  "disappointed!"

Building A Belly, Belly, Belly!

We've been building Bean's belly. It's been rather easy lately, as all she seems to want to do is play on the IPad and eat.  She's been eating rather healthy stuff too.  Honestly, I think what's really helping is the whole chocolate milk.  She drinks a lot of it, although she doesn't much care for plain milk.  I don't blame her, I can't stand plain milk either.  But, the calcium and calories are so vital.  Last night, we had rotisserie chicken and Andi could not get enough of it.  It was awesome!  Protein is vital too.  In any case, things are going really really well on the feeding. 

The walking hasn't been that great lately.  She has seemed a little more wobbly since she had that flu.  My guess is the ears are bugging her.  I think her left ear, where the tube is working itself out, has been giving her a bit of trouble.  It's just a guess.  We have both PT and OT tomorrow, so, maybe we can work on some new ideas for encouraging her to walk more.  I was called yesterday to "preregister" for the PT appointment.  She said the appointment could cost up to $240., I think I started hyperventilating.  She said I could take care of that cost over the phone.  I said 'no thanks!' I'm prepared to give them $20., and that's about it.  I think I'll work on paying down the deductible over the year.  They can kiss my ... grits.

Although I feel like I'm fighting a bit of a cold, (why yes, it was only two weeks ago that I had stomach flu!) I've made myself a massage appointment for tonight.  Daddy Bean is leaving early tomorrow for a few days in NJ for work.  So, he suggested I take my night off because it will be awhile until I can have another night off.  So, a prepaid one & a half hour massage it is!  Yippie! It's been so long since I've had one, I probably have about eight prepaid massages to use!  I will, eventually, with glee.

Acing The Test!

Andi not only knocked it out of the ballpark, she skipped her way around those bases.  Andi passed her swallow study with flying colors.  They said they couldn't see any problems of any kind.  Usually, when I leave an appointment or anywhere on the campus, I walk out with a heavy heart. I often feel beat up by all the appointments, and all the many things we're supposed to work on.  I wonder how to juggle all the many things, and divide my time so no one feels left out.  It's been taxing me with almost a sense of dread these past few years.  Yesterday, leaving the radiology clinic, I walked out with the biggest smile on my face.  I strolled Andi to the car basking in the bright, cold sunshine with an air of lightness - as I felt for the first time in years, free!

Getting Andi medically cleared to eventually get her g-tube out is probably the biggest obstacle we have had to face.  While her balance issues and walking are a problem, her g-tube has been the biggest hurdle for our sense of normalcy.  Only two people, other than me, would willingly feed Andi via g-tube, and one of those two lives clear across the continent. No one wanted to deal with it out of fear, and some even thought the blenderized food we'd send down was a big gross.  Maybe it was, but, that sustained and improved Andi's quality of life immensely.  So, us getting away from using the g-tube has opened us up to a whole new realm of normalcy.  Andi could go to daycare, preschool, stay the night at a friends house, without anyone having to tackle her feeding.  Here she is at 31 months, almost 32, and we no longer dependent on the g-tube.  This is a massive victory! 

The plan now is for Andi to show she can consistently gain weight on oral feeds, and possibly get the g-tube removed in April.  I can't think of a better gift, than for that thing to be gone by her 3rd birthday.  What a treat!  I am anxious for it to be gone.  I believe it will take a surgery to take out the g-tube, and sew up the two holes (stomach, abdomen).  I'm not positive about that, but I kind of hope they do.  The other method of just taking it out and covering it up sounds a bit nasty, and the risk of infection is greater.  If they do a surgery though, maybe by then we'll know if her left ear tube needs to be replaced or not.  They seem to think it's slipping out, and they aren't sure if she still needs it. 

So, even this morning as I sit here, I still feel a sense of accomplishment and relief.  I'm so excited to have good news to report for a change.  I feel it has been a long time coming.  There has been much sadness, frustration, fear, and anger over the past two and half years of life on a g-tube.  I'm so thankful to finally be on the other side of it.  I just want to throw a party and celebrate.  I guess we'll combine the g-tube removal party with Andi's 3rd birthday party and make it even more spectacular than the previous two.  Yeah, we definitely need to celebrate!  We are grateful.