4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, January 23, 2013

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!"

Tuesday, January 22, 2013

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.

Saturday, January 19, 2013

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.

Thursday, January 17, 2013

Conjuring Some Good Vibes

As we get ready to have our swallow study tomorrow morning, can't help put it out there that we are needing some good vibes!  Hopefully, all goes swimmingly well.  I will pack a variety of foods, textures, items, all in the hope that Andi shows them what a big girl she is!

I received an email today from the Kaiser dietitian.  She asked how things were going.  I shared that Andi's been 100% orally fed for something like six weeks now.  She wrote back, "That is the best news I have had this week! You have done a great job with stopping the vomiting and getting Andi to eat!!"  So nice to have validation from a professional.  It's a good reminder how far we've come and how much being with Andi every day has helped propel her forward.

So, may the swallow study show that Andi has beat her feeding issues. Let us move forward so we can work on tackling the next hurdle. *good vibes! good vibes!! good vibes!!!*

Tuesday, January 15, 2013

CHARGE Syndrome Conference

On my WILD Friday night, I did a bit of research on what it would take for the three of us to fly to Phoenix this summer to attend the annual CHARGE Syndrome Conference.  It's being held in Scottsdale at the end of July.  I like it hot, but, that I imagine will be a glimpse of hell.  My research had me scratching my head and rubbing my butt... OUCH!  *expensive!*  On Southwest airline, it would be a little over $1000. for us to fly down there.  It will cost Daddy Bean and I $500. to attend conference ($250. per person, Andi is free), and the resort hotel - which looks pretty dang plush, is the cheapest aspect of the trip, surprisingly.  So, that would be our "vacation" for the year.  I really, really want to go though.  Not necessarily to learn more about CHARGE Syndrome, but to surround ourselves with "friends" we've made through the Facebook group.  Hanging out with some of these Moms, and getting to meet kids we've followed for over a year, would be the biggest joy I can think of.  These kids and families, inspire me.  They make me better, stronger, and without sounding too cheeseball, they make me feel whole.  We've all been through layers of trauma and PTSD, and for once, I would like to hang out with a fellow survivor and their little warriors!!!

Annoyed though, I shut down the airline site with the frustration of cost.  We're in major savings mode as our home needs a new roof BAD.  We have a lot of dry-rot causing sag, and at one point, a nice leak racing down the back of the house walls.  It was pretty bad.  We have lots of things to fix, and need to save the money to do so.  Therefore, a trip to Arizona was looking pretty low on the totum pole, especially at that price.

Then on Sunday, I had a thought of looking at what it would cost if we used this no-name airline a friend of mine just brought to my attention.  We would drive down to Eugene and fly out of the small regional airport, and fly into a small airport in Phoenix/Mesa.  In doing so, we found it to be half the price of the big airline.  I brought this to Daddy Bean's attention and he said two words, "book it!" 

Daddy Bean has family down there, and he used to live down there, so we're planning on making more of a trip out it, than just attending conference. One of my bucket list items is to see the Grand Canyon.  I've gotten a few hours away when I was driving from Atlanta to Portland, moving here 17 years ago.  But, I have never seen it.  Therefore, we're definitely going to do that! 

So, when it's hotter than hot in Arizona this summer, we will be there sightseeing and schmoozing!  Sounds like fun, no?!

Friday, January 11, 2013


We postponed our swallow study, at KAISER, to next Friday as we've all come down with the absolute worst case of stomach flu EVER.  I've never been so sick in all my life!  It's been a miserable week!  We finally seem to be on the road to recovery.  Finally. 

I weighed in a whole seven pounds less yesterday.  Although I would KILL to really lose seven pounds, it just shows how dehydrated and wrecked my system was.  My concern is lil' bit... she doesn't have any weight to lose. So, we've been trying small amounts of food and as much fluid as she'll take.  Last night, I resorted to putting water in her g-tube.  I put in 1 oz and then waited a few hours, then I put in one more ounce.  Soon after that, she got sick again.  Just goes to show that I need to trust her, she seems to know what she can handle.  Today is the first day she's been awake in several days.  She's watching her show and playing on the Ipad.  Since we've been locked up most of the week, we're running low on a few supplies, so we got a Papa Murphy's pizza for lunch.  Andi has enjoyed several bites with lots of water.  So, we seem to be on the path to recovery!

I hope so, it's been a very, very long week.

Monday, January 7, 2013

Not Fun

Our swallow study has been on the schedule since November.  After which, we meet with the feeding clinic team to discuss results and formulate a game plan.  Our appointment was set for this Thursday.  This weekend, I received a letter from some paper pusher at Kaiser stating they did not approve the external referral, because they've determined they can do this in-house.  Wha.Wha.Wha.WHAT?!  We've done four or five swallow studies over the past two years, and all of a sudden you want to take it in-house?  My mind started flashing all sorts of reasons why this was a bad, bad idea.  Andi KNOWS the radiology people: Tom, Misty; the speech therapists: Nancy, Steve; and of course, our feeding clinic team:  Kristin, Audrey and Dr. Senn.  So, I'm percolating some really bad energy, rather pissed at this very sudden departure from who we have worked with these past two years. When it comes to a professional patient like Andi, who has more specialty appointments than any one person should, and on top of that is often unsure of new people, and sometimes the look of 'oh no, what does this person want to do to me!?'... to all of sudden go from people who she knows, and who know her, it's a really big deal to change away from that. 

To make a long story short, they are bringing us in-house on Friday to do the modified barium swallow on Friday morning - with our regular Kaiser speech therapist.  So, one of my concerns about having to start all over with someone new, whom Andi doesn't know - is resolved, as Andi know her well.  I am disappointed that we won't be seeing our friends up on the hill, but, I've brought them up to speed on all things Andi via email.

Last night, we awoke to Andi projectile puking in our bed. She's been sleeping in our bed for several weeks now, which is an issue we hope to fix soon, especially after last night.  I got her off her back, and into the bathroom where she puked a couple more times.  After she settled down, I brought her upstairs and changed her pajamas, then got her settled back into her bed downstairs. She went back to sleep and I hopped in the shower to get the puke out of my hair.  Daddy Bean changed our sheets, as they were pretty soiled.  Basically, it was a rather gross disruption in the night. She hasn't puked today, but whatever it is, has effected the other end.  So, I have her in her cozy pj's and napping.  I made her some homemade chicken noodle soup for when she wakes up, as I want to give her things that are easy to digest. She's been drinking lots of fluids, so hopefully whatever upset her stomach is being washed away.  I hope so, this kid can't afford any weight loss, and dehydration would derail our 100% orally fed/hydrated.

Friday, January 4, 2013

Ear Cleaning Deep Pockets

Yesterday, we went to see the audiologist team at Kaiser, and then the Kaiser ENT.  The audiologists did not test her hearing, instead, they determined that Andi's ears were wet and and contained a lot of "debris".  So, we met with the ENT and he suctioned her ears.   He then prescribed a round of ear drops that will hopefully help them dry and stay healthy.  He said that it appeared that the tube in her left ear is working itself out.  We'll have to keep tabs on that, and determine down the road if we'll need to put another one in.

In any case, they confirmed that our out-of-pocket is 20% of the purchase price of the hearing aid.  So, if it's a $2000. hearing aid, my portion is $400.  I started sweating.  Putting a $400. piece of breakable equipment on Andi everyday and sending her out into the world, i.e. pre-school in a few months... having to replace that if it gets broken?  lost? Scary.  I made it clear to them that we're in no hurry to get this going.  Seriously.  Aiding her ear will definitely be deep cleaning our pockets.

Thursday, January 3, 2013

A New Year!

It's a new year, and boy, how quickly things can change!  When the kid decides she wants to do something - she does.  Andi Bean, I'm pleased to report, is going on one month of being 100% orally fed.  Yes, you read that right... Andi is eating and drinking by mouth.  She was weighed Monday by her feeding specialist and she is maintaining her weight at 21.3 lbs.  Usually, when kids make the switch from g-tube or oral feeds, a weight loss usually occurs.  So far, we're doing great!  It's a lot of work, and it takes a lot of time, but ding-dang - we're hopeful to get that damn g-tube out of her!  We have one more big hurdle to cross, although her Kaiser feeding therapist was optimistic, we have our swallow study at the hospital in one week.  This will gauge how well she's doing coordinating the swallow, determine if there's aspiration of any kind, and if thin liquids (water) are now allowed.  After the swallow study, we will meet with our feeding clinic team to discuss the results and map out a game plan.  They essentially will determine if we're on the right path, proper pace, and if there's a g-tube free life out on the horizon.  I could try to bribe them with more cookies, but honestly, I would rather put my energy into pumping calories into the kid. I'm sure they'll also look at her weight, and will want to see her constantly gain weight on oral feeds before they'll do any sort of removal plan.  My hope is that the more she does eat by mouth, the better she does, and therefore, the quicker and more volume she'll ingest.

It's been a long time since I wrote last.  We have been rather blinded by the flash that was the holidaze fly by.  We made our usual containers of cookies and delivered them to the various Dr's, nurses and specialists that we have worked with over the years.  It was an obscene undertaking and I'm still sick of the thought of stupid cookies.  We had a helper here with us this year though, Flat Charlie.  Flat Charlie was here to help.  Flat Charlie has been marching all over the world to raise money and awareness for CHARGE Syndrome.  He's been everywhere from Canada to Australia.  It's a rather impressive passport. 
Meeting Charlie and reading about his travels!

Andi and Charlie meet.  Andi is actually saying, "Charlie" here.

First night sleepover

Hearing testing with Charlie

Hi from the dirty Willamette river.

Andi and Charlie on the swing!

Andi and Charlie on the swing

Making music with Charlie.

Play dough with Charlie at our hearing impaired play group.

Andi, Charlie & Santa

Andi, Charlie & Santa

Charlie and the cookie tins!

Charlie and the finished product.

Sightseeing with Charlie.

The entrance to Doernbecher's Children's Hospital where Andi used to live.

The view of downtown on our way off the hill where the hospital is...

So, we had a lot of fun showing Charlie around, and he was a great helper in the kitchen.  I added a rose we were given by the Royal Rosarians (the official welcomers to Portland).  It's on his right arm and almost appears like a tattoo - which is very Portland.  It was either that or some really large button earrings that are not conducive to future employment.

We also spent a few weeks in Alabama with Poppa, Ginga and Uncle Chris.  We had several additional pairs of hands helping the 'Feed A Bean' program.  Ginga was cooking up a storm, and Andi was eating everything offered to her.  It was amazing.  The weather would be warm and sunny one day, then rainy and cold the next.  Of course, as soon as we leave, the weather got back to warm and normal... WHATEVER.  We did endure a tornado warning on Christmas night, and spent a few minutes giggling about it in the bathroom with our beverages in hand.  We had a great time, although, Poppa and Ginga will probably think twice about okaying such a long stay in the future, as they are probably still recovering from our visit.  Andi's vocabulary has exploded as well, and I assume it's because of the additional people talking to her, as well as her desire to learn.  Last night, she helped me eat broccoli and chicken, and kept saying, 'broccoli' and 'hickin'.  She's singing songs, rather clearly, and is constantly looking to absorb more.  She sings, 'row, row, row your boat', 'twinkle, twinkle little star', 'abc song', 'happy birthday', and the most overheard, 'Signing Time with Alex & Leah'... It's been fun to have her work on her words, I just dread the day she starts talking back to me and the ever-dreadful stammering "NO!"  Hopefully, we'll be spared the little diva attitude.

Today, we're off to Kaiser for hearing testing and a consult with their ENT.  Although we've tested regularly at Columbia Regional, to get Kaiser to cover our hearing aid, we will need to go through the hoops at Kaiser and do it all over again.  Call me crazy, but redundancy annoys me.  Work in conjunction with whom you sourced us out to, trust them, and spare me the expense and time. It's a brand new year, and although most people are excited about that... I dread it.  A brand new year means new deductibles, more co-pays.  All those I had already satisfied early last year.  Now, I have to start over.  *insert major eye roll here.*  Perfect example, yesterday, we met with Andi's PT at Kaiser.  Normally, that appointment costs me a $20. copay.  Now that it's a new year and I have a $2000. out of pocket deductible, that same appointment they wanted $115. out of my pocket.  I gave them $40. and will conjure the balance out of my butt another day.  I understand that those of us who use medical support should pay for those services, but people like me who work with various therapies and have to jump through flaming hoops to get something covered, is really, really, really expensive.  I'll discontinue my rant there, as it's just going to get ugly.

What matters is that Andi is doing great.  No amount of money is worth more than that. 

With the new year ahead of us, we're hoping to get Andi involved with hippotherapy (horse therapy) - as the gait of a horse is similar to walking and often helps kids with balance issues. It's expensive, but, again... whatever is going to help Andi is worth it.  We also are going to contact this Chinese Herbalist whom has been recommended by another Mom to help with Andi's immune system.  Those are two things we're hoping to move forward with in the new year. 

May this year be filled with health, love and happiness for all, and may this be Andi's best year yet!!!