Birthday Bash!

Andi's 1st Birthday was a great day for celebration!  The sun was out the majority of the day.  Then when I fired up the BBQ, the thunder and rain started.  Luckily, I rented a small tent and propane heater.  ...Portland weather... **editing commentary!**

Despite wanting to loudly celebrate the end of a very tough, but very successful year, we tried to keep the party rather small.  It was mostly family, and it was a huge success.

In addition to the weather snafu, the party was topped off with our 3 year old dishwasher crapping out.  JOY!  Hopefully they can get here soon to fix it, as hand washing dishes is not in my contract.  HAHAHA...

In any case, Andi seemed to have a great time and used her best manners!



Birthday Girl & Froggy!




Birthday Girl Sitting Pretty



Supermodel

Birthday pre-party!

Get a card, ...eat it!

Reading my birthday card!

Loving my card

Tastes like chicken!

Announcing Andi's Birthday to the neighborhood!

Birthday Party Outfit #1

Blowing Raspberries for the camera!

Birthday Princess!

Strength -vs- Weakness

Today is Andi's unkie's birthday, "Unkie Christian poo-poo head." (My brother and I are perpetually 12 and 15.  ....He's older, btw!)  My brother is one amazing supporter of the Bean.  Although everyone supports the Bean, he's taken it a step further.  When Andi was hospitalized, and on oxygen, I made a statement on this blog how people can honor Andi, support Andi, by taking better care of themselves.  Holding their own health as sacred, and something to treasure. Unkie Christian took that to heart, and quite smoking last October. With Andi and her struggles on his mind, he tackled his addiction.  That takes strength, determination and love.  Strength.  We all have it inside of us.  Trust me.

On the other side of the spectrum, I was informed that a co-worker from several years ago, took her life.  While I haven't actually spoken with her in a ridiculous amount of years, and I didn't know her as well as I would if we worked in the same office, the news of her death threw me against a wall.  This is a woman who was almost always upbeat.  Good energy.  A sort of hippie vibe to her, she was just a wonderful presence to be around.  I can't imagine what she was going through that she must have felt death was the only option for relief.  I don't want to impose my own opinions on her decision, especially without knowing her reasoning, but I can't help think that's the most incredibly selfish act anyone could ever do.  Consider it from where I've been this past year... I've been surrounded by sick kids in a children's hospital, surrounded by the worst of the worst.  I've heard kids scream in pain and horror.  Heard them cry for twenty minute stretches.  Yet, I've also seen the biggest smiles, loving and appreciating life, family, love.  So to come from that reality, and then hear of someone who felt so strongly that their obstacles weren't something they could deal with, let alone overcome... I just don't understand that. Again, I don't know her reasons, but I feel the world has lost a ray of sunshine, despite whatever, and I'm saddened that she felt that she needed to do what she did... sickened really.  Health, physical or mental, is something to treasure.  If you're not feeling good... go see a Dr., get checked.  If you're not satisfied, go see another Dr.   Actualize. Verbalize.  Do what you have to do!  Ask for help. Talk to friends. Reach out to whomever.  Find a safe place, a person you feel comfortable confiding in... and unload your burdens.  What is it that Oprah said the other day, (sorry, I'm still enthralled with her finale!),

"you're worthy because you are born and because you are here. Your being here, your being alive makes worthiness your birthright. You alone are enough." (Oprah, the finale)

The best I can do is remember her, and hope that I share with everyone else that I'm here if you need me.  Slap me upside the head. Reach out.  Please, I'll always give you an ear, a shoulder, a voice of strength.  We all have it within - and I hope to help everyone else find it.

Barbara, you will NEVER be forgotten!  Thank you for making such a lasting impression on my life. I aspire to have such great, fun-loving energy making others feel special -- like you did to me!  I appreciated knowing you.

Dancing Visions

"My great wish for all of you who have allowed me to honor my calling through this show is that you carry whatever you're supposed to be doing, carry that forward and don't waste any more time. Start embracing the life that is calling you and use your life to serve the world." (Oprah, the finale)

Inspirational words.  Especially for someone who never felt driven by a force or passion greater than me.  That driving passion that catapults you from bed every morning, excited by the prospect of making a difference, enlightening others, or even to just make money to give your family a better life. That, is something I've never really chased before.  But, that is about to end. Here I sit even more compelled to chase the visions dancing in my head. The time is now.

In two days, one hour and 28 minutes, my baby Bean will be one year old. One year.  It flew by in the blink of an eye. Her health is seemingly (knock-on-wood) stable, and the only major obstacle is her stupid g-tube.  She's making great progress on being able to hold her head and sitting up.  She's standing with a lot of assistance.  And, according to others, she seems bigger, longer, stronger, and even more engaged.  She's a little comic. A ham.  She's saying a few words now.  "Dad", "Dog" and one she performed this morning perfectly on cue, "Ginga!"  Ginga arrived late last night (Delta.com, ...we will have words!)  Andi has been in hog heaven, especially because her other Grandma, spent the entire afternoon with her yesterday as well. Having her grandma's around, the Bean seems to smile a bit bigger, more easily, and with more frequency.   She's happy.

In the past year and a half, I've had a few visions.  When I was pregnant, I once envisioned what Andi would look like.  I believe this was before one of our last 3D ultrasounds (we had 2D ultrasounds every three weeks from late January to late May.) My visual of the Bean prior to birth was pretty right on.  I thought her hair would be lighter, but in speaking with her Grandma yesterday and looking at the photos on the wall, her hair has lightened considerably over the past year.  The other vision I had somewhere in the course of the last year.  I don't remember if she was still in the hospital, or here at home with us. This vision was of Andi "running" around on the beach.  I say "running" because it was the clumsy running of a child rather new to walking --the stumbling, fumbling, falling-down learning process. I just know in the bottom of my heart that she will get there.  It might not be happening just yet, but, it will happen when she's ready.  I just have these visions of her dancing around on the beach, giggling. I have the biggest hopes, aspirations and dreams for our Bean as she approaches the 2nd year of life.  I hope it's full of love, strength, joy, learning, and growing.  More importantly, I hope it is full of dancing.  Dancing, laughing -- all while educating & inspiring others. My calling, or ours... the time is now.

Checklist

This week, I determined it was time for me to make a checklist.  There are so many different things for us to "work on," that only with a checklist can we try to work on all of it.  Sitting, tummy time, crawling position, standing, feeding, hearing aid, signing time, the list is about 15 different items.  It's a bit overwhelming.  Our OT said that Andi needs to start putting weight on her legs, otherwise, they might not grow right.  So, everyday we have our chores cut out for us.

I can't believe one week from today, Andi will be one year old.  She's the size of maybe a six month old.  I often have to remind myself of what all she's been through, and not get lost in the where she is -vs- where she should be.  Honestly, it's hard sometimes. I've been watching the final Oprah shows, and yesterday's show had one of Oprah's favorite guests of all time.  This lady on whom was on her way home when her car was struck by a teen drunk driver, and she was severely burned.  Her face and body melted. She has had over 120 surgeries.  Several years ago when she was on the show, she told Oprah that she only allowed herself to cry five minutes a day.  Five minutes a day to grieve her loss, her pain, her life. It was very moving, very inspirational.  It just goes back to when you start feeling bad about your lot, your situation, to remember that someone next door, or even down the street is probably fighting a battle much more difficult than you.  It helps to keep things in perspective, keep things positive.

So we move forward with a checklist of items to work on.  Keep things in focus and moving ahead. Marching onward with a checklist, and a good attitude.  Grateful.

First Haircut

Andi got her first haircut today.  It was rather minimal. Just a cleanup of the long -vs- the shorter hair.  The top has long curls, whereas the rest of it is straight.  It's rather interesting.  When she can actually sit on her own, we'll move into more of a styling.  But for now, she **sassy voice** got her hairs did!

Attitude Adjustment

That poor, foolish woman.  Calling up the pharmacy this morning, to place my bi-monthly reorder for Amoxicillian, some foolish, foolish woman made the error of giving ME attitude.  Me.  I'm in your pharmacy twice a month, at least.  You're giving ME attitude?  ...Really?  Yes, it's Monday...bah hum bug.  Yes, I did not sleep well.  Yes, she may not have been intending her tone, but, she made the unfortunate misstep of pissing me off.  The last person (or program) that did that, got a big ol' email telling them how they've insulted me. Slicing and dicing them back into submission... great therapy. 

In these hard times, customer service is more important than ever.  It's unfortunate that most companies, and their low morale employees, simply just don't get it.  Without taking care of your customers, they will take their business elsewhere.  If they can take the person out of the equation, they will, just so they don't have to deal with someone else's bad attitude.  If I could email in my bi-monthly reorder, or place my order online, I would.  It's one of my least favorite things to have to pick up the phone. When you do get me on the phone, you better treat me right.  I'm a mother couped up in the house too much, with a massive list of things to work on.  Don't tempt me, cuz it's almost a therapeutic sport to unleash the beast!

I haven't been sleeping well lately.  Last night, ideas of things I should be doing with Andi rolling around in my noggin'.  This is not me.  I usually sleep like a rock, well, except for puke-prevention patrol.  Stress.  I'm not a fan.  Luckily though, I can take it out on the deserving foolish people who cross me.  Although I am not confronting this current offender directly, I have the joy of sharing my experience with you, so maybe you'll think twice about how you talk to people today.  Putting a little thought into other people, maybe that's how we break the vicious cycle of negativity.  "WWOS?"   'What Would Oprah Say?'  WOW.  This confirms I've been watching way too much 'Behind The Scenes - Oprah' ... yes, wild Friday nights with the DVR!

So, Miss Pharmacy tech... I will leave it at this, borrowing a line from Ginga - and giving it the ol' Poppa B sarcastic twist... "O' Bless Her Heart!"  And maybe, just maybe, she'll have more fore-thought, realizing that she works in health care, and having no idea what the person on the other end of the line may or may not be going through, perhaps she shouldn't share your bad attitude with the customers.

Educator

Failed to share that our community health nurse has asked if I want to come **sassy voice ** 'edjumacate dem all about CHARGE Syndrome.  Apparently, the other nurses haven't heard or don't know much about CHARGE.  So, sometime in June, Andi and I will be enlightening our first group, officially.  Luckily for me, our CHN actually encourages my usual sense of humor ... bad jokes and filter less ways... which makes her July 1st retirement really chap my hide!!  :0)  We will miss her monthly visits, and the input she has toward Andi's progress.

I told her about my book idea, and that's what inspired her to invite me to talk.  Wowza.  I've only made time to write one page, so, I need to find a way to carve out a few hours a day for me to write.  But, they say that if it's important to you, you will make it happen.

I've been working on preparing for Andi's 1st birthday party at the end of May. We're going to have just a small party here at our house, but there's planning that needs to occur, as our house is small - and thus, the party will be outside.  Now, if we were living in say, California... a backyard party in May, no problem!  But, let's face it, this is drizzletown USA, and there's no telling what weather we're going to get that day...so therefore, we'll be renting a tent.  Under that tent, we need places for people to sit, so, we need to rent some tables and chairs.  No biggie...it's all good, but still... a lot of thought has to go into such a production.   Originally, I was planning on having the biggest party west of the Mississippi, to celebrate the end of a very difficult, yet wonderful, year.  But, things aren't as $imple as they used to be, so, therefore, all her Dr's & Nurses will simply get an update card in the mail - letting them know how she's doing. 

Andi's spending more time in her bumbo and high chair these days.  Since operation turbo flip -- pulling out her g-tube on her contour pillow, we're going to try to do her daytime bolus's upright in her high-chair.  It's too tough to sit next to her for a little more than an hour and try to keep her from trying to flip over, despite the tight seat-belt.  There are too many other things going on to be tied down to her every feed, so... it will help with the sitting upright, although it seems to put her g-tube in a more leaky position... so be it.

In any case, she's getting stronger.  Hopefully, she fattens up soon.

I'm having trouble getting the 30ml flush down in between feeds.  Because 1 oz is quite a bit of liquid to add to her full tummy, I'm trying to do the flush between feeds... which isn't always easy.  It means stopping her from her play-time to put the MIC-key back in and gravity in another 1 oz of pedialyte.  It's kind of a PITA, but, it has to be done.

The 33 calorie formula seems to be tolerated.  She had a great night last night, slept deep and hard, and then at 6 a.m., pukage.  As I vented, she got sick a few more times.  Big bummer, but... her daytime bolus has been sped up to 81/86.  So, I kicked in another 1 ml (which is nothing) to try to counter the stuff we don't keep, and sped her up so it's done in just about an hour.  Makes for more time to work and play... which she seems to enjoy.

We're trying to get her to say 'Mom'... she says 'da da' all the time...although, she doesn't really associate 'Dad' with 'da da' just yet.  But she does say 'hi!' and will wave.  I don't think I've posted video of that yet...will try to capture it, as it's pretty dang cute.

I'm pretty excited about talking to people and teaching them about CHARGE Syndrome.  It will be a great incentive to finally master my monolog.  I'm sure Andi will love seeing a bunch of new faces, and after a few minutes, she'll probably smile really big, say 'hi!' and give them all a wave, or ten.  Yeah, we're looking forward to educating others.

Reiterating A Point

Perfect example to reiterate my point.

Andi just flipped over on her contour pillow, underneath the seat belt during a feed, and yanked out her g-tube.  The entire thing popped out.

Daddy hadn't yet experienced that, so he reminded me of me on my first experience with it. I however, was totally calm and collected.  Asked for items to help me, and when I couldn't spit it out fast enough, ordered Daddy to sit down.  Spent 30 seconds saying, 'calm down.'  Reminded him that we have 5-6 hours before the hole will close up, and even still, she might need a few stitches to seal her up.  He settled and I went to work.

Wow.  It wasn't that bad, and I can't believe how at ease I was with it.  But then again, having seen it eleven or so times, ... I guess I should be a pro.

So now, I should have little fear with it.  Been there. Done that.

Feeding Clinic

I haven't posted lately because there really hasn't been anything to update. The entire month of April was spent working on getting Andi to tolerate her g-tube feeds.  Since fixing the leak, it was tough to get her to tolerate the volume being pushed on her.  We went from 85 ml/hr (with leak) to 90 ml/hr (no leak) with a lot of vomiting 3/4 of the way through.  So, we slowed it down and gave her more time to receive & process the volume.  She went to 45 ml/hr with a total of 90 ml. So she'd feed for two hours, with a one hour rest, then start feeding again.  Too much.  Throughout the month, it was puke prevention patrol every feed.  Venting when she got fussy, so we can remove the air and make more room for formula.  I worked very little on oral feeds, because besides not being hungry, I wanted to really concentrate on getting her feeds tolerated, sped up, increased.  We also went from 27 calorie formula, to a 30 calorie formula - by adding Polycose.  As of yesterday, she was tolerating a rate of 78/total volume 87.  So, she was really taking on more, leaking less, and puking less.

So, today, we went back up to the hospital where their feeding clinic is... and little Bean weighed in at around 13 lbs., 2.2 oz's.  Yep, if you recall, that's pretty much the same as where she was two weeks ago.  I think she's officially 26" too, as she was finally measured a different, more accurate way.  She seems bigger, heavier to us... but...!?  Her lyofoam (part of the g-tube gerry-rigging) slipped out last night, so she leaked through her bedding again.  I also stopped her nighttime feed at 3:30 a.m., as they wanted her to come to the early morning appointment hungry.  Plus, her skin is a bit dryer today, all point to the possibility of her being a bit dehydrated.

Meeting with a whole new team today, I had 11 months of Andi Bean living to regurgitate.  I felt partially like a recording, partially like an idiot, and partially like I came across like I think I know too much.  It's weird.  Here are these highly educated people, and they don't know us, they don't know Andi, and in the course of an hour or two - I have to get them up to speed on someone I've gotten to know these past eleven months, the first five of those she was pretty out of it with ill-health, dope, or hey, the fact that she's an infant?  I gave my speech, then new people emerge, and I gave it to them as well.  Some more detail, some editing.  It was a feeding clinic, so you have the pediatrician, the dietitian, the feeding specialist, and we had a nursing student.  My stance is the more people I have looking at Andi, the more input or ideas I can get on how to help her progress.

The dietitian increased us from 30 cal to 33 cal.  Our g-tube feeds are now 85 ml (4 x's a day), and 30 ml/300 ml total at night.  In addition to that, I need to give her 30 ml (1 ounce) of water or pedialyte 4 x's a day as well, to help with hydration.

The feeding specialist liked Andi's work with her spoon, drinking from the cup and with a straw.  It was when Andi got a chunk of solid (cheese puff) in the back of her throat she started to choke, gag and gag, then puked.  Her g-tube stuffing got wet from the liquid she drank.  Yes, it's a massive eye roll going on over here. They've ordered a swallow study to determine if the thin liquids are a problem for her, as she coughs a bit. She also is supposed to only use the straw until the swallow study, because her head placement is protected, whereas, when she drinks from her nosy-cup, she tilts her head too far back, and opens herself up to the liquid "going down the wrong pipe!" and thus, coughing.  So, I've been given a laundry list of things we can work on.  The swallow study should be in two weeks, and then she wants to see me back in four weeks.  One thing I appreciated that the feeding specialist asked me is what my goal is for Andi.  I really dug her opening up that door, because I like to make it clear to everyone and their brother that the g-tube is complete failure for us, and we want it gone as soon as possible.

The pediatrician looked Andi over as well.  She was pretty pooped by then, and she really objected to his man-handling. He said a few things that were new and helpful.  First of all, his mention of the GJ was immediately shot down.  I think I actually dropped a few inappropriate words in my several monologues, nothing too lewd, but, the GJ is just not a viable option for a little girl whom I'm already having trouble keeping still during a regular g-tube feed.  Despite a seat belt, she tries to roll over on her contour pillow, even flipping over, plugged into her feed.  Or worse, grabbing onto the tubing, as she's becoming more and more aware of it.  A GJ tube, if yanked, would require an x-ray to check positioning, and I just have to put my foot down here and say no!  The g-tube was supposed to be the perfect option for us, and that is a complete failure that has cost me countless hours of appointments, gazillion loads of laundry, and the piles of insurance co-pays... oh, hell no to upgrading to the GJ.  No. 

Ooh - so, I totally went off on a tangent.  Shocker.  I am trying to recall what interesting tidbits he had to offer.  He had said that he had worked with a few CHARGE kids before, and that lack of growth was a genetic factor of CHARGE ('G' in CHARGE.)  I asked about the growth hormones that I read about on some website, and he said that the growth hormones would only make her grow a couple of inches in height, maybe fill out a little bit, but it would also increase her caloric needs and they usually don't give them to kids under two.  Ah, the other interesting contribution was about Andi and her nasal suction machine. When he was handling her and she got pissed, I took her and put her up on my shoulder. I noticed that she was sounding snotty and mentioned it.  He said, 'yeah, she's about to leave a bit of it on your shoulder.'  I laid her down and got out the dreadful bulb syringe, and held back her arms with one hand, tried to hold her face still with that same hand, and then used the nasty bulb syringe to retrieve the green snot out her nostril.  He saw our fight and in discussion, I mentioned that I have a nasal suction machine at home, and it's just as big of a fight to get to use it.  He said he had a kid with some sort of nose problem and he just would spray the nose with saline and then put his kid on his stomach and hope that he sneezed it out.  The fight with the nose, or anything with the face, can cause more trouble by creating an oral aversion.  Their instinct can become to protect the face, whether it's food or suction, or whatever...it's something that we have to be really conscious of... ['Joy!  I'll add it to the list!']  But seriously, that was something I may have heard before, but didn't really hear it. 

The feeding specialist said by looking at Andi today, her feeding, her physicality, that although she is eleven months old, she is around a 5 - 6 month old.  We have some serious catching up to do.

I'm rather surprised by the lack of weight gain.  I'm wondering if some of that was dehydration.  Looking across the room with her snoozing during her afternoon bolus, I see a little girl on a pillow.  She's no longer a little girl though.  She's grown so big, only having six inches until she fills the entire contour pillow.  Growth has been slow, but if I think back to where she was just a few months ago, it amazes me to see how far she has come.

It'd be even more amazing, I'm sure, had she been getting full feeds all along.  I can't even imagine how much stronger she'd be, if she had full nutrition.  It makes me mad to go to that dark area of 'what if's' and 'wtf's' and so I don't normally allow myself there.  It doesn't do Andi any good.  It does however make me stronger when it's time to say 'no!' to something a Dr. suggests, standing firm in my decision.  They may be more educated than I, but, I know my little girl and I live this life 24 hours a day, whereas, they just get a glimpse of her in the course of an hour or two. 

All that being said, I strongly believe that kids are resilient, and she will go through spurts of growth.  Andi's going to be great, super strong, and will advance faster than they say she will.  The Dr. said that depending on how the swallow study goes, he believes that Andi might be able to get off the g-tube within six months.  As Dr. Mom, given a normal swallow study, my goal is to cut that timeline considerably.