Clingy Bean

Beano hasn't been 100% lately.  It started with what seemed to be a tummy ache last week - which included the pukes, the runs, and whiney, clingy behavoir.  Then it turned into a cough and congestion with whiney, clingy behavoir.  I took her to the Dr. yesterday, just to have her checked-out because I worry when she has such a tough cough.  We did a chest x-ray, making her sit up in this plastic contraption trapping her arms above her head and squeezing her tight.  It looked most uncomfortable.  However, the x-rays showed that she didn't have pneumonia or anything requiring an antibiotic.  When he returned to review the x-rays, Andi was asleep on my shoulder (her favorite location lately), and he was able to see what I meant by 'labored breathing'.  Since I can remember, Andi breathes fast and seemingly labored when sleeping.  She sleeps hot, and I am guessing her little body is working hard, and thus, burning more calories when it is supposed to be 'at rest.'  This is an issue.  He listened to her and determined that the breathing noise was nasal, and we did a one-dose steroid to help with inflammation.  Then, he said I could get this nasal spray, but Kaiser pharmacy doesn't stock it - so I have to go elsewhere.  TREAT!

Andi hasn't wanted to be in her high chair at all, and is super fussy in it until I take her out and hold her.  Clingy Bean.  Lately, she has enjoyed sitting on the couch, instead of in her chair or laying on the floor.  She wants to be close.  So, as I try to type this update, my little lung-cheese filled Beano is sitting next to me, holding onto my sleeve or arm, watching Baby Signing Time for what feels like the millionth time.  Her cough is a bit rough right now.  We've been sleeping with the humidifier on, and that seemed to help.  For now, the humidifier is pumping and the clingy Bean is chillin'.  We'll forget about trying to get to the baby gym for socialization until this cough is long gone!  In the meantime, I try to savoir the clingy Bean time, knowing she will someday shun my sugar-filled affection. So, I sit here singing along in my head, 'strolling, strolling, strolling down the sidewalk...' and as I look down, the Bean has fallen asleep.  Rest little one, rest.

Feeding Clinic: Lighter, Dryer and Coughing...

Andi's pretty in touch with who in the room is a doctor, and she lets everyone know which one in the room she doesn't like.  It's kind of sad.  Understandable, but sad, as everytime she gets around a doctor, she gets very upset.  Today, we went to the feeding clinic at OHSU.  They weighed Andi, and she was down to 16 lbs, 11 oz's again.  However, it was deemed that she was probably a bit dehydrated based on the information gathered.  She has had a bit of a tummy bug the past few days, has thrown up a couple of times, dryer diapers, fingertip color slow to come back.  I suspected such, but didn't really think of it.  Don't know why I didn't think of that these past few days, as I could've countered it earlier.  So, today, she didn't do as great as I had hoped, but they concured she wasn't feeling well.  They decided they wanted to do a swallow study next, to see if they can push her a bit more. Sadly, they didn't get to see her eat like a champ, although she did eat and drink for them.

I mentioned to the Dr. that Andi still works hard breathing at night.  It's like her whole chest is hard at work.  It has been like that forever.  It was suggested that might be playing a role in her lack of weight gain, as she might be burning even more calories at night than thought.  So, we'll be following-up on that.  I also asked when we'd look at the bladder reflux again, to determine if and when she can get off the amoxicillian.  It was tucked in the back of my mind that bladder reflux might be something that she could outgrow.  She's been on a low-dose of amoxicillian since something odd like August 2010.  Getting off that would alleviate my need to go to the pharmacy every two weeks, which would be such a nice change!

Valentine Reflections!

Happy VD ...
..."Avoid The Clap!"  *hearing my Mom snicker!*

I hate Valentine's Day.  I see it as a Hallmark-contrived holiday to sell more junk.  However, there are many loves in my life - and I hope to show them each and every day.  Or at least, hope they know how I feel.  Without them, I don't think I could maintain the levels of sanity my life has required.  Without them, I think I'd fall apart.  Without them, well, I think I would shrivel up and remain in fetal position for long periods of time, if not forever.  Whoa, was that dramatic enough?  So, yeah, I have many I love. 

Cory, he makes our family work.  You are the hardest working, most thoughtful, considerate, insightful, dedicated, responsible sweetheart.  You push me to be better, and I don't envy your having to deal with my stubbornness.

Andi, who melts my heart everyday and fills it full of joy. 

Maddux, my first born, four-legged fur-baby!  The best 'dogga' in the whole wide world!

My Dad, my rock.  I think of you everyday, and miss you horribly.  Consult your calendar!!!

Linda, a.k.a. Ginga, the best present this family has ever received!  Consult your calendar too Ginga!!!

My brother, the funniest person I know, and yet has the most tender heart.

Michelle, my step-sister, who inspires me to do better, as she lights up every room she enters.

My bosses, Ken & Tom... 16 years and counting!  Notice you were stuck between family & friends, as you're the best of both!  ...Shea too!

My treasured friends:  Holly, Julio, Story, Amy, Brooke, Jason & Carrie, "Twinny!" and the countless others I fail to list.  You each bring such positive energy, enlightenment, or simple comic relief -- there have been so many good times, bad times, and the laughs in between!

Thank you all for helping me, encouraging me, championing me, kicking me in the butt, or simply being a part of it all.  I am better because of you and I love you all dearly!

There have been many troubling things going on around us, as friends have had some hard times.  From the loss of parents, loss of a child, to a premature birth - living in the NICU.  Having gone through hard times myself, I feel not only gratitude for those around us, but a level of empathy I didn't have prior to enduring it myself.  I haven't always known what to do, or how I can help, but have tried to think of what others did for us when we were down, and tried to live by that example.  I have come to believe that simply being there is the best thing you can do.  I know I was a zombie during our darkest days, but I can pretty much recall every single person who came up to the hospital to see Andi. That meant the world to me.  So, it is my hope that I can somehow be effective in helping others.

It is on this Hallmark-contrived holiday that I stop to reflect on what's important to me, those I love and cherish.  So, it is with my grateful heart that I hope that you all know how vital you are to me, and hope that I can be there for you, as you have been there for me.  Oops, I can't be there now, because someone just told me they were "all done!" with nap-time. 

Happy Valentine's Day!

A Crawling Bean!

Ladies and Gentlemen,
...she crawls!!!

Garbage Contents & Victory Dances!

It's taken me a few days to calm my ego, but, the hearing aid has been found!  (sing along) "whoop! whoop!  uh-huh, OOoh-y-e-a-h!!!"  I was pretty stoked, and pretty mortified at the same time.  In a conversation with Daddy Bean, it was suggested that perhaps the hearing aid was (gasp!) thrown away in the trash.  I gave it some thought knowing I would NEVER do that... but decided to sort the contents of the very full garbage bag on its way out to the garbage can.  A big ol' "what if?" rolling through my head.  It would be very foolish not to look.  So, I armed myself with some dish gloves, stiffled the gag, and transported the contents from one bag to another.  Hmmm... days old food scraps (sorry Portland, I'm just not feeling the whole forced composting thing...) [out-of-towners, don't even ask...], dirty diapers, and uhm, paper towels - because we are truly wasteful people and go through TONS of paper towels.  [I will plant a tree Portland, please don't protest outside my door!]  As I got down toward the bottom of the bag, thankful that my "bionic nose" is no longer super-human strong, I was shocked and amazed as I pulled out another wad of paper towel [eh-hum... s-o-r-r-y!!] I see the little beast flipping around as the contents around it shift.  I couldn't believe my eyes.  I called Daddy Bean back.  Although it was very late in Atlanta, I had to give him one less thing to worry about.  We both did a little victory dance! 

Yesterday, I took Andi to her hearing test.  I explained that she's been wearing her hearing aid for longer periods of time since they "turned it down."  They suggested putting the clip on it - so I can clip the hearing aid to her shirt.  I did that today, and she wore her hearing aid all morning long!  VICTORY!  As far as her testing, she did even better this time as far as the level of decibels she's responding to.  Wearing her hearing aid, she is responding to items just on the other side of 'normal' level - which is 'mild' hearing loss.  Amazing!!!  Did another little victory dance!

In emailing her feeding specialist, I've informed her how since Andi's stopped puking, she's more eager to eat orally.  Go figure!  Andi is eating & drinking at almost every feed.  She signs 'eat' and 'drink' and has been ingesting more and more by mouth.  Today for lunch, she had between 1/4 cup to 1/2 cup of lemon Haagen Daas.  I pulled the contents out to get the air out, and then put that and the blenderized meal in... so, she definitely got a lot of calories for lunch!  So, anyway, we're meeting with the feeding clinic team in two weeks, to see if she'd tolerate being pushed more before another swallow study.  That gives me two more weeks to really strengthen that swallow and coordination by the mere act of doing... *happy dance!*  It's time-consuming, but, our overall goal is to get her off the g-tube as soon as humanly possible - and this is the way that is going to happen.  Therefore, it's worth every minute!  Can't wait for the ultimate victory dance -- when she gets the dang thing removed for good!

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!

Responsibilities

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!!!!"