4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, October 23, 2012

The Other Side

This Friday when we attend the hearing-impaired play group at the preschool Andi might attend, we are supposed to meet a family whose 19-month old daughter also has CHARGE Syndrome.  In our 2 years and four months of living with a CHARGER, this will be the first CHARGE family we've actually met in person.  I'm excited to meet them, and honestly a bit nervous.  I don't socialize much anymore and sometimes feel I let the stupidest things fly out of my mouth.  Last Friday, I met another Mom whose son is also g-tube fed, and has trouble holding his head up...things we've been through with Andi, and I felt like I unleashed the verbal diarrhea of what we've been through.  It's almost like a verbal resume, 'look, here's a glimpse'.  It's awkward, and something that rolls off with very little effort.  I imagine after the horror of what Andi's had to overcome, I seem a bit brazen with my resume.  Luckily, those of us who have been through it, or something similar, it's received with a nod of recognition, empathy, understanding. It's what I imagine a survivor of Hurricane Katrina goes through when meeting a fellow survivor.  Interesting dynamics that bring people together.

Andi is finally wearing her hearing-aid full-time.  It's such an amazing change from having to hover over her for the full five minutes before she'd tear it out.  It's been such a nice change.  She's also walking eagerly with her non-medical walker. If only the room was bigger, she'd get more practice.  But, she's managed to walk one direction until she runs out of room, and sometimes she'll navigate herself to the other side and push herself back across the room.  It's pretty cool to watch.  Another thing Andi is doing is saying and signing, "A, B, C, D" and "1, 2, 3"  today we worked on "4, 5, 6" which is pretty fun.  She is such a little sponge, just eager for more.  It's such a nice change from where we were two years ago now... home, but on oxygen and just weened off Methadone and Ativan.  Getting to this side was hard, but, we're finally here.  And I'm excited to see what lies ahead.

Friday, October 19, 2012

Vacation Remembered

I haven't been writing much lately. I haven't felt much like writing, but outside of that we've either been busy or sick.  We're still fighting off the remnants of cold #847.  It's annoying.  I bought even more hand sanitizer, and am debating leaving the house each day with all of us outfitted with rubber gloves. 

Several weeks ago, we took our annual 'vacation' (vacation really meaning that Ginga watches Bean and we get a rare night off)  and hung out with friends and family in the south. 

In Montgomery, we got to sneak away from the Bean for some early morning golfing.  We don't get out to golf much anymore, so this is a rare treat.  We were able to squeeze in four rounds in our trip!!!

One afternoon, we took Andi to the Montgomery Zoo.  We were expecting it to be a fuddy-duddy, but were blown away by it instead.  Although the exhibits aren't as large and 'true to real life' as they could be, the closeness we were able to get to the animals was awesome.  We even got to feed the giraffe's - which was stellar.  (These shots are from my cell phone.)



It really was a cool experience, and got some better reviews than the Oregon Zoo - whom we frequent often.

One weekend, we drove to Atlanta to fly down to see our long, lost friend.  Meaning, we lost her to the lure of Florida sunshine.  Sadly, I don't think she's coming back to rainy-town, U.S.A.  It was so fun to spend a weekend with her!  The second cool fact of that trip was that another friend flew in to spend the weekend with us!  It was a mini-reunion and it was AWESOME!  We sang, 'reunited!' (Peaches & Herb)... we laughed, laughed, laughed... and had some serious fun! 

view from one lunch spot in Florida.

we went swimming at the pool!

The next week, Daddy Bean and I stole away for a few nights in New Orleans.  We absolutely love New Orleans, and have often said that if they had the infrastructure and services Andi needs... we'd consider relocating there.  It's just that magical.  This time, we did a City Tour, which was really cool.  We actually got a first-hand look at what the whole 'fishbowl' is... we got to see where the city sits 6 feet below sea level.  We also got to see the remnants of Hurricane Katrina, which was disturbing.  Seeing the visible water line was pretty humbling.  We got to see things that are just better seen in person, than seen on TV or even at the Katrina museum.  We also visited the National World War II Museum, which was really amazing.  I think the most impressive part of that was the number of veterans that were viewing the exhibit with us. The museum was a bit overwhelming, but we finished our tour with an interactive movie that is narrated by Tom Hanks.  It was pretty cool.  Then of course, there's the whole intoxication that is the French Quarter.  The energy, the vibe, the views, the music, the food... oh, the food.  I still dream about it.


And, one of Andi's souvenirs!

Our last night of freedom found us in Biloxi.  We treated ourselves to the Frank Sinatra Jr. concert at the IP.  It was amazing, so cool we felt it was a bucket list item that we checked off.  That good.

All in all, we all got sick, got better, and have since got sick again.  Good times.

As I look out the window at the rain coming down, and I'm about to fire-up yet another cup of tea (insert eye roll here)... I can't help look back at our 'vacation' and seriously click my cold feet under the table eagerly.  I repeat, 'there's no place like home, no place like home, no place like home'.

Boo.  It didn't work.

Thursday, October 18, 2012

Walking Bean

Andi made a major stride yesterday, and now she's doing it rather often.  Pretty cool milestone!

Friday, October 12, 2012

Turning Points

I hate to jinx it, but I think Andi has made a couple significant turning points.  First of all, Andi has been wearing her hearing aid all day long.  She has even been to kid's club with it in, twice. If it comes out, she whines and gets mad - demanding it gets put back in. She's eager to say new words every day!  She's like a little sponge just trying to gain more knowledge.

Our second turning point is oral feeds.  We left her feeding specialist earlier this week with the goal of getting Andi to take two feeds by mouth, rather than through the g-tube.  The past two days she's eaten just about everything offered her.  My only fear is that I don't know how many calories she is getting with my doctored mashed sweet potato or mashed potatoes, with all the additions I throw in to make it taste good.  Last night, she was having some cream of potato soup late in the evening.  She was extremely tired, and instead of swallowing it, she accidentally inhaled it.  It so went "down the wrong pipe"...she coughed and coughed and coughed.  I felt bad for her, but find that when she gets that tired, she doesn't fare as well.  She tends to fall over and smack her head when she's super tired.

It is my goal to get up in the middle of the night and give Andi an additional g-tube feed.  It's my "goal"... so far, I haven't been able to wake up.  I'll keep trying though.  She weighed in at the feeding specialists office at 21 lbs.  Slowly, but surely, we're gaining weight.

Tuesday, October 9, 2012

Humbling The Whiner Within

Been away from the blog for awhile. We spent two weeks in the SE, visiting family and friends.  Daddy Bean and I also stole away to New Orleans for two nights, and a night in Biloxi - where we saw Frank Sinatra Jr.  It was most precious time away from the Bean, which is so ridiculously rare.  Unfortunately, we were both fighting colds... so, it wasn't quite as fun as it should've been.  I also found that despite being sans-Bean, we still spoke of her often.  Often quoting Yo Gabba Gabba lines from the show.  For example, there's a store in New Orleans called 'Razzle Dazzle!' - so of course, Daddy Bean says 'Razzle Dazzle' in his best Muno voice... as that is something he says often.  We giggled.  We haven't been giggling much lately, so it was definitely a refreshing change.  We've decided that if they'll have us, two weeks with Poppa B and Ginga is really better for us, for Andi.  She gets more time to know them and enjoy them.  It's so far to go for a short period of time.  Luckily, we can work wherever there's Internet connection, so, that enables us to go and do just like we are usually stuck here at home. 

Andi has been busy working on her feeding, OT/PT - balance/walking issues.  She's coming along well and we've been given homework by our therapists.  Currently, she's on her 3rd hour of keeping her hearing aid in.  I'm about to take it out only because I need to get her down for a nap.  She's still not keen on nap-time, but, she'll be more than a handful for Daddy Bean tonight if I don't get her rested.  I can deal with nap-less Bean, but, he's not a fan.

I seem to keep getting big fatty bills from the hospital.  I'm already on a payment plan for one from last year.  Luckily, they let us pay it over a year, interest free.  However, I just got another one, and I'm about to puke.  I seriously don't understand how someone with double insurance is stuck with these large bills.  You'd think that we'd taken the necessary steps to alleviate us from the financial burden of a "special needs" child, but, apparently... it just isn't so.  I'm sitting on three bills from the hospital now and need to find my level head and strong stomach to call and find out WTF!!!   A lot of medical billing is incorrect, but... we haven't really found that to be true. In any case, it's stressful.  I feel like an old fart saying I remember easier times when we had money in the bank, room on our credit cards, and an easy, breezy light lifestyle.  Seriously, I miss that feeling.  Instead, we have the polar opposite and it's choking.  No one seems to really talk about the financial strain of having a kid with special needs.  You add the vast array of therapy's and medical procedures needed by a kiddo with CHARGE Syndrome... and wowza... it's a whirlwind of hardship. Yet, we'd pay every penny and then some to make sure Andi has the best possible foot forward.  It's just overwhelming at times to really express the high's, low's and all the levels in between. We're in a unique spot because we make too much money to qualify for assistance, yet, we still have the same bills as we did before Andi, then all the medical bills/copays, and it just makes for additional stress -- as if Andi's well-being and development isn't stressful enough.  Ah, the joys of parenthood!  I didn't read this one in the brochure though!!!  Enough venting.  It doesn't actually make me feel any relief, just makes me feel like a big ol' whiner.  I have so much to be thankful for...there are kids in the PICU/NICU struggling.  I read about them everyday and it keeps my gratitude in check, humbles me with my superficial worries, and reminds me to savior the many positives we have surrounding us.  Complaining about money woes will always be something all of us do, it's natural.  However, in the big swing of things, the bigger picture, our woes are nothing when we have health.  Therefore, I bow in respect. I choose to send my best positive vibes out to the world, my thoughts to those kids who are still fighting the medical fight and the biggest hugs to their family. I understand.