Tuesday, April 28, 2009

A Boy, his Bear, Laughter, and Choices

I think Charlie has FINALLY caught on to the fact that, while he is an AWESOME big brother (more on that later), there are things he cannot do. For example, when Emma is crying, he cannot pick her up by himself and comfort her. This is difficult for my little man.

Enter Bear.

Bear is fed, comforted, put to sleep, read to, burped, etc, frequently by the Charles Monster

And it's hard to catch the sweetness of the spontaneity of this behavior on video, but today I did my best:

In his excitement to see the video, yes, he fell over. I asked, "Charlie, are you ok?"

He stood up and looked at me and said "Bear's ok, too"


Emma, meanwhile is practicing her various new skills. Her favorite this week is the various expressions of joy. We have the Giggle, the Chuckle, and, one time, only for Charlie, did we hear the Mommy Thought You Were Screaming Bloody Murder But Really You're Laughing Your Head Off laugh.

We all understand, however, that *I* have been unable to reproduce this laugh? She was sitting in her little seat on the floor one day and Charlie bent over to talk to her and I thought for sure he had accidentally leaned on something because of the sound she made but when I ran over to stop him, I realized that he had made her ALL OUT LAUGH. It brought me immense joy. And, yes, I'll admit it, a little bit of jealousy. But mostly joy :)


Lastly, I just want to publicly say that my Mom ROCKS! She took the kids by herself last weekend while Josh and I went to a Early Childhood Special Education conference/retreat at a local hotel. It was a great conference, put on by the county and ARC .... and did I mention the full night's sleep in a hotel? That was particularly great :)

I have admit there were a few mixed feelings meeting other parents of special needs kids, though. It was back to that whole "I don't think I signed up to join this club" feeling. Don't get me wrong, there were some great parents and great stories and it was mostly uplifting, but most of the parents we met were just far enough ahead of us in the process that it made us think more about what could be ahead for Emma. It was hard, too, because there were no other CdLS kids' families there. Many of them had kids on the autism spectrum or with cerebral palsy, so the issues were very different. I guess I just need to remember that taking one day at a time and seeing the joy over the worry is a CHOICE. It's a choice I make every day, and MOST days I make the right one :) Forgive me in advance if you happen to cross my path on a day when I've forgotten to make that choice :)

Anyway, that's about all I've got for today. Let's all thank God together for the BEAUTIFUL weather, shall we? :)

Thursday, April 23, 2009

three conversations with Charlie

1) Background info: Anything with a siren "helps people" in our way of thinking. Fire trucks help people be safe if there's a fire. Ambulances help people who get hurt or sick. Policemen help people ... ummm ... remember not to drive too fast? :)

driving down the highway, we see police cars with their lights on dealing with an accident with cars in the ditch:
C: Mommy, I see a siren!
Mommy: Oh, you're right, it's a police car. He's helping somebody who was in an accident. (i couldn't see that there were actually two cars in the ditch)
C: He's helping TWObuddies!

Get it? SOMEbody/TWObuddies? hee hee


2) Background info: I have a grandmother who lives in town. Her name (given by me 29 years ago) is Gommy. She's almost 90. She looks almost 90.

again, in the car:
C, pointing out the window: What's dat??
Mommy, taking a guess as she is trying to drive and there are MANY things out the window: is that a black car?
C: Who's dat driving da car?
Mommy, stealing enough of a glance to determine the sex of the individual driving: That's a lady driving the car.
C: Dat's Gommy!

Other than the fact that they were both probably over 85, the woman looked nothing like Gommy, but I still thought it was sweet that he thought of my grandmother.


3) Background info: if you've been reading lately you know that Charlie LOVES celebrating with Emma as she does things well. I encourage this, mostly because Charlie is really anxious for Emma to be involved with him (no, Charlie, she's STILL not big enough to be pushed around on your tractor!) and this is one way he can be involved with her.

Sitting in the kitchen, Emma is eating and I am giving her some paci time for oral stim during her feeding.

Mommy: Charlie, look how great Emma is doing with her paci today!
C: Did I like my paci when I was eating with a tube when I was tiny newborn Charlie?


(that's the sound of Mommy's jaw on the floor)

I think I responded something like this: "Remember when Emma was in the hospital because she had an owie on her tummy? That's why she has a tube. Not all babies have tubes. You didn't have an owie on your tummy, so you drank out of a bottle."

(I didnt' feel this was an appropriate time to discuss that he also breastfed. The conversation was already a little over my head ...)

Charlie moved on from this moment without skipping a beat, but it sort of left me wondering if we're doing this right. Do we need to sit him down and have a "Emma's different" conversation with him? I don't think so, but this journey didn't exactly come with a guidebook!!!!

I guess we're just going to answer the questions as they come ....

But it again emphasized something else to me. What exactly would we say? WE DON'T KNOW WHAT EMMA IS GOING TO BE CAPABLE OF! Even if we did sit Charlie down to explain CdLS, what would we tell him? "Emma may never ..." NO WAY!

And that was a happy thought :)

Tuesday, April 21, 2009

you asked for it, you got it!

Quick update: Emma had a pediatrician visit this morning. She's up to 8 lbs, 14 oz. Big girl!

And Dr. R was impressed with her development, too, with Emma sitting holding up her head and "talking" and giggling. Today she grabbed something from my mom and moved it from one hand to another. Seriously, why are these things so exciting to me? :)

Sorry, I've been a bad blogger. We were out of town this weekend visiting my WONDERFUL in-laws. And I TRIED to get Josh to take pictures of Charlie at his first baseball game with Daddy and Papa, but apparently it was not to be ... He had a great time, I promise.

And I suppose I should tell the Mickey button story, just for the sake of continuity :)

Emma's G-tube button has been doing just fine for the past several weeks, since the initial "no food is going in, it's all leaking out" panic subsided. About a week ago, however, one of her parents (not her dad) *may or may not* have caught her feeding tube on something when she (or he ... ok, i confess, i did it ... but don't tell anyone) went to pick Emma up. Emma was not pleased, but also not injured. However, her MICKEY button's balloon (for those without experience, it's inside her tummy and stays full of water to keep the button in the site. It's like the back of an earring.) was not staying inflated anymore, though, so we were back to Leakytown.

And for some reason, this issue didn't really become unmanageable until we were 3 hours away in Duluth!

So at 6 am on Saturday, after 2 nights in a row of Emma waking up soaked from head to toe, our GI doc said we need to change the button and if we weren't comfortable with doing it alone (you're kidding, right?) we should take Emma to the ER.

Praise God we had our spare button kit with us!

So after explaining to the ER doc what a MICKEY button was (he was going to send us to radiology to have them sedate her and remove it with a scope down her throat ... ) and how it worked, we observed our first button change. I think next time I can do it by myself like all the rest of you old hats at this, but I was glad to be in a hospital the first time just in case something went wrong.

So, anyway, we're back to being "Emma good." Actually, things are going pretty well! How 'bout a little praise and worship? :)

Here's hoping you are more amused than the other customers at LeeAnn Chin's were on Sunday night when he decided to burst into song ... but how do you try to silence something like that? :) Isn't there something about if you don't the rocks will sing?

Wednesday, April 15, 2009

Friday, April 10, 2009

Of mundane things like Crocs and sickness

Daddy came home on Wednesday night to find that his family was a little tired. We were all collapsed on the couch, in fact!

Charlie has been sick. Nothing too terrible, just enough to make Mommy's life harder. But I have to say, there is a definite silver lining to a sick child: LOTS OF SNUGGLES!

However, you can't just sit and snuggle with Mommy all day; Grandma and Papa gave us new Crocs! Even while sick a little dude can always enjoy a new pair of orange Crocs Boots! (don't let the expression on his face fool you: the pj's and crocs attire was completely his idea ... would i do that to my little dude?)

Ok, I'll admit it: we're a Crocs family! I swore I wouldn't fall into the addiction, but I've gone over to the Plastic Shoe Dark Side. We wear them inside especially: they make great slippers, and Charlie enjoys that he can get them on and off super easy.

*** content edited: Daddy vetoed the "nothin but Crocs and a diaper" pic that should be here ... it's cute, but I suppose, as usual, Daddy knows best***

And while we're already throwing fashion out the window in our orange plastic boots ...

Oh, well, I still have control over ONE of them as far as the wardrobe goes:

"I am SO above all this nonsense"

"hmmmm, sun on my face, wind at my back .... maybe this isn't ALL bad ... but we'll see"

Thanks, Melissa, for this adorable sweater for the Emma Bear!

It's so nice to be re-acquainted with the outside and all it has to offer! It was a long winter ...

Happy Spring and HAPPY EASTER, everyone!

Wednesday, April 8, 2009

Quick thoughts - my prayer

Last night I was thinking about the emotional roller coaster we've ridden in the last year - thinking about how I'm sure it's not over.

And then I was thinking about the high I'm on right now that Emma's development is going so well.

Someone gave me some really good advice when Emma was born. I'm told (by nurses) that unless you've had a child in ICU you may not understand this - I know I didn't before Emma. This has been a set of emotions I never imagined possible.

(but then again I've never parented teenagers ... :) )

The advice was to RIDE the roller coaster. Let yourself all the way up to the top of the highs and hang on tight for the extent of the lows. You can't feel the highs without the lows, so hang on for the whole ride and let yourself really FEEL all of it.

The reason I'm thinking about this is I'm sort of at the point in our current high that I'm waiting for the bottom to drop out. And I'm hesitant to be on the high because that might make the low hurt more. Does that make sense?

So here's my prayer - I'm trying to trust that Jesus will be there. Yes, there WILL be another low. Maybe she'll get sick, maybe something in her development, maybe .... whatever. But I'm trying very hard to pray for God to enable me to see that safety net that IS there that is Christ Jesus. He's not going to let me fall farther than his hands are there to catch me.

So since HE'S already at the bottom of the next dip in this thrill ride, waiting to cushion the fall the way He always has, I'm going to savor the view at the top for a little while. He's here, too, right? Dancing right along with us as Emma does her next trick

Tuesday, April 7, 2009

Is it wrong that I'm a little obsessed? :)

I can't get over Emma's new tricks! I think for awhile I was falling into the mind game I've heard other CdLS families talk about that because they look like a newborn in size you assume they'll act like newborns. But she's so big girl!!!

Charlie, on the other hand, is feeling a little under-the-weather, which is partially due to not having had a full night's sleep since Mommy stupidly let him watch part of Aladdin at a friend's house this weekend and to say he was scared by the Cave of Wonders scene would be an understatement. Sorry, buddy, I was fooled into thinking that "Disney" meant "safe" ... won't make that mistake again!!!

Hopefully I'll be posting some new pics soon of how excited he is about his new Crocs! Thanks, Grandma and Papa!

Friday, April 3, 2009

No mother has ever been more proud!

She was just waiting for the right moment in the song :)

This was about the 10th time she successfully did this today, so she was pretty sick of the new trick, but showed off multiple times for Daddy when he got home.

Charlie and I danced around the room cheering the first time she did it :)

Lamest accountability plan ever

see, if i put it out into cyber space that i'm planning on doing something, i HAVE to do it, right? :)
2 goals:

1) with the GENEROUS financial support of my in-laws I'm back to doing yoga - which is sooooo good!!

2) I'm having trouble getting into the Word again. So at a friend's suggestion, here's what I'm trying: Pick your passage for the day (I'm using the Useful Breath daily reading plan) and open your Bible to that passage and leave it open in the kitchen all day. I'm trying to get it weaved into my day that God's word will speak to me IN MY REAL LIFE, WHERE I'M AT, with RELEVENCE. Plus, Charlie wanted to read a Bible story this morning when he saw ME reading it while he finished breakfast, so I'm hoping that this isn't a short cut and that the Lord will bless the effort.

So there it is, now I've said it out loud, that means I'll be forced to keep up on these things :)

And since she's so darn cute ... you know you need your Emma fix for the day! :)
Tam says she's channeling Cindy-Loo Who, here.

Whoa ... you mean that hand belongs to ME?

"I love you, Mommy!"
Can you just hear the little giggle? It makes my day!
Blessings to all! Have a great weekend!