Unringing the Bell

Just Living

I am having a few concerns about our current pediatrician's office. Nothing MAJOR, but, there have been a couple things that I am not happy about. They are not all in direct relation to the pedi- herself, but...anyway...

...after seeing how amazing the nurses at the hospital were yesterday I just KNOW there has got to be a better practice where I can bring the kids. I mean, we go to the doctor's office often enough that it really shouldn't be so unpleasant. I get that a lot of the unpleasantness is because of G's anxiety, but I have to just allow myself to admit--I was trying to be nice, understanding, docile--that the nurses (except one) at our pedi's office are just not nice, warm, inviting, helpful....they just aren't pleasant. And they don't try AT ALL with Georgia. We go in, they go out. As few words as possible. No smiles for Georgia. No "It's okay, sweeties."

Am I asking too much??? I mean, this is their JOB, right? To be good to kids? Why the hell would you go into pediatric nursing if you didn't like children?

That's not the point really. I guess I have no point. Except, I guess, to say that Georgia walked into that hospital TERRIFIED. The first hour we were there was AWFUL. It could have been worse, I could have been there alone, without Alex, and WITH Rainer or something (like most our pedi visits), but she was pretty darned scared.

Thankfully we got to be alone in a waiting room for awhile. With a tv. And on the tv was Sesame. That helped. But the nurse who came in to do her triage was just so patient and kind and she spent the time to "watch" Sesame, use the pressure cuff etc on me and Alex before using it on her, bring in a life specialist with a doll so Georgia could put the oxygen mask on her. Oh. All sorts of stuff.

By the time there was room for us in the main waiting area (with the toys and the other kids awaiting surgery in their hospital johnnies) Georgia was calm. Heck, she was enjoying herself. So many cool toys!

 
Even when it came time for Alex to walk her back to the OR and while they were putting the mask on her to administer the sleepy-time tea, Alex assures me that while Georgia was a tad tense, she didn't scream or cry. 'tis a Christmas miracle! 

Post surgery:

 

It took G a while to wake up from the anesthetic. After awhile we were sort of jostling her about, sitting her upright, trying to wake her up so we could go home--they would not discharge us until they saw that she was going to be ok. The pip ate TWO grape popsicles in her sleep! Finally the darndest thing woke her up--turning OUT the lights!

Today is day three post-surgery. G is feeling a little more pain in the past 24 hours (as evidenced by her mood) and she is extra sleepy (she took a morning AND an afternoon nap today which she NEVER does), but she is doing really well.

She's added a bunch of signs since I last listed them all, in the two days alone she has added "duck" and "ice cream". She is really quite proud of herself. She's also been telling us when she is tired by signing "sleep".

It's funny, I guess I was hoping for this miraculous change after surgery in her speech. We aren't going to have that, but I guess I am feeling more patient these days. Partly because she is signing more and because I can see this evidence--clear evidence--in her understanding lately, and partly because now that surgery is done I can stop waiting on a prayer.

Time to just live. Which is what we are doing. All of us, finally.

 

The Short Story

Just wanted to let you know we are home and all is going well!

Because of the anatomy and size of Georgia's ear canals they were unable to place tubes at this time. HOWEVER, they did not find ANY fluid in her ears and she passed her hearing test in both ears with perfect hearing! So that was a surprise! I guess I had my hopes up a little that this would help her in the speech department, but since she is hearing so well already I guess we just continue to be patient with that. Her signing has EXPLODED lately so we are on our way.

They also did not take out her tonsils!!! Her apnea was mild and when they went in they saw that her tonsils are very small so they did not remove them. Hopefully they won't grow over the next 5 years or so and cause a problem, but we agreed that since it is a harder surgery to recover from that there was no good reason to take them out now.

They DID take out her adenoids which apparently were HUGE! VERY HUGE! The doctor said he'd be surprised if she could sniff or blow her nose at all with the size they were. So, hopefully that will at least help with her chronic sinusitis and possibly her breath support (maybe this will help with speech, too).

And we ended up being allowed to go home today (we were going to stay over one night) with just Tylenol for pain! Georgia is doing very well right now. Hopefully she will continue to do well over the next few days and we'll be back to normal in no time. She was pretty stressed out when we first got there, but the nurses at Hopkins were amazing and after about an hour she did really well.

Thanks for thinking of us!

Will write more when I have more time/energy.

This time tomorrow...

...we'll have been at the hospital for an hour awaiting Georgia's tonsils/adenoids/tubes surgery. I just spoke the the office and they moved her surgery to 11:15am--originally 9:15am, then 12:15pm, but whatever, they have their reasons, right?? I just hope Georgia isn't sitting in a puddle of tears and anxiety.

I recently learned that if you are going to do surgery you ought to do it BEFORE the 4th of July weekend because AFTER the 4th of July all the interns are new. So we just squeaked it in, eh? Hopefully we'll be long gone before all the newbies descend on us like vultures circling for carcasses. LONG before.

We're staying overnight, but apparently it is up for debate whether or not this is necessary. Our doctor keeps all kids with DS overnight though and I'm not going to complain or worry about it. I am sort of a paranoid freak and I just like to be amidst the people who know what to do if she stops breathing or something. Having been there, it ain't fun. That was a TOTALLY different situation regarding too much morphine (and granted we were IN the hospital when it happened), but still. THEY knew what to do when it happened.

I digress.

I am a basket case already, awaiting the arrival of my dad and stepmom who are going to look after Rainer during the day tomorrow.

I just can't wait to be on the other side of surgery. (I can't believe I am uttering that phrase again.)

Soon enough we'll be thinking, "Ahhhh, this is the life...

Yesiree, Bob. THIS is the Life!"

Totally Awk*

One-sided conversation** which took place at Wal-Mart this morning. (And here I thought I could just bip in and buy diapers with nary a problem.) Please keep in mind that I was three people behind in line when this conversation began so there were plenty of spectators and it seemed to go on for.ev.er.

Cashier (eyeing Georgia and all but yelling): Hi sweetie! Hi girl!

I gotta' cousin with Down syndrome. She's a diva. She's a diva, don't let nobody tell you no different. I go over there to play with them and she's all hand on her hip, 'I wanna' play by myself!' She don't talk much, but she let's you know she want's to play by herself. She's a diva!

Hi, girl! Give me some sugar, there!

I go down the group home and I work with some them kids. So sad. But they so happy I go there. So glad I go spend time with them.

But my cousin, No sir! She's a diva!

This sort of thing goes on for a LONG time, no one else is saying anything. Occasionally one of the other customers gives her a half smile or nod. I just sort of...breathe.

Meanwhile Georgia bites my finger. It's a total accident and also my fault--I was trying to brush some cracker crumbs off Gs mouth by pushing them INTO her mouth and OOPS! Of course, I don't want all these people to think she just randomly bit me so I pry my finger out of her mouth with nary a whimper even though SHOOT! She was biting hard!

I don't go undetected. A tall man in the aisle over has been observing the whole thing. I avert my eyes.

This entire time the cashier is going on about her cousin and the people she works with. I am not exactly upset or anything, just feel put on the spot. Like a specatacle. Like Georgia is a spectacle. I mean, the woman is NICE enough and she DOES work with these people she keeps talking about. I mean, she just doesn't have any sense of decorum.

Anyway, finally it is our turn in line. There are plenty of people behind us...I don't know what she was saying up to this point because I was kind of glazed over, but then she starts talking TO Georgia. Georgia, unaware of what the lady is saying is giving big smiles. I am glad she is smiling and not having some kind of tantrum, but it also bugs me that she is being SO showy for this woman--usually lately she is shy.

Anyhow, the woman is saying...wait for it....

You normal! Right, girl? Give me some. Give me some sugar. You normal. You tell them. This could have happened to you! Right, girl. Are you a diva? Yeah! You are normal, right? This could have happend to you! You tell them, this could have happened to you! It could have happened to me!

You normal, girl! You normal!. You normal! You normal! You normal!

and so on....

And while the message, admittedly, was more or less, on par with what I'd like people to think...the delivery...well that had much to be desired. Or maybe not. I dunno. Maybe I prefer this kind of delivery if you are going to say ANYTHING. But you know, we're not freaks on parade.

*My sister and I often abreve words and this is a common phrase in our lexicon.
**Maybe one day these things will happen and I will not feel a compulsive urge to share them, but at the same time I hope they never become SO commonplace that I just plain old get used to them.

Proof of Laughter

A friend once told me she's never heard Georgia laugh. It's true that when we are out and about G is usually on a mission (a mission for fun) and she seldom vocalizes in front of non-family members. So, I had to post proof of her laughter. I LOVE her laugh. It's so real. And I love that it is her brother MAKING her laugh in this short little video.