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!!!
*hopeful!*