Sunday, May 31, 2009

Shortest Not Me! Monday ever ...

cuz we're going off the grid for next week.

I can't even link back to MckMama yet as it's not technically Monday, but I thought I'd share this one confession anyway before shutting down for awhile:

I did NOT, this week, give my two-year-old bubble wrap to play with to buy me 10 minutes to shave my legs. This plan, therefore, did NOT backfire when said two-year-old walked into the bathroom and asked me where my pee-pee was ...

See you next week!

Wednesday, May 27, 2009

Don't worry

I've always secretly resented the "don't worry" verses in the Bible. Come on, don't you hate it when you're worrying about something and someone says "don't worry." Or, ladies, when you're crying and your husband says "don't be sad." Like now I'm worrying AND I'm wrong for doing it?!?

I read the Discipleship Journal, a Christian magazine with encouraging articles about various topics in the Christian walk. This month there was an article written in the 1600's about the Phil 4:6 verse that says "be anxious about nothing." great ...

But it was a fabulous article! It talked about how when we're surrounded by things that are wrong (illness, poverty, loneliness, whatever), it's natural and ok to want to have those things go away. However, our motivation and perspective is where we get into trouble. The point should be that God's will be done for His glory. So if I'm in a season of sickness and God has me there on purpose so that I can learn something about His character and therefore live a life more glorifying to Him, then I don't need to worry about the illness

Obviously I believe in medicine, I believe in seat belts, I believe in working hard, I won't have a laying-on-of-hands if the dishwasher breaks, I'll call the mechanic!

But the point is that if we have God's perspective instead of our own, it should make worry go away. If it's God's will for Emma to not talk, but I'm still worrying about it, am I worrying because it will make my life harder? Am I worrying for selfish motives? I think that's where the verses come from. It doesn't mean "don't worry about whether or not Emma will talk and don't get her speech therapy because if it's God's will, she'll talk" Obviously we will advocate for our little girl relentlessly. But it does mean that if I pray and bring my little girl's development before the Lord and then do everything in my power to nurture her God-given abilities, then I don't need to worry about the outcome, because if I've put it in God's hands then whatever happens HE will be glorified.

I loved one of our Pastor's advent sermons last year. He was talking about when the angel came to Mary and said (basically) "I know you are unmarried, but you're going to get knocked up anyway and it's going to upset your entire life, but it's for God's purposes" and Mary said, "Great! I'm totally on board with being used by God, no matter what it does to my reputation or my engagement or my future plans"

So the article encouraged me once again to try to be like Mary. To trust in the Lord and lean not on my own understanding. (Pr 3:5) God will work all things according to his purposes, and I need to have faith that his plan is GOOD. And that removes worry (for the 30 seconds before my very human brain forgets about it, anyway:))

And God is good! Emma reminds me of it everyday:

video

Translation: God is good. Did you hear it? :)

Tuesday, May 26, 2009

PS - Emma was there, too! :)

She was just inside rewarding the girls with some awesome belly laughs!

I know I've said before that I love how much kids love Emma, but I'm recently discovering that Emma also REALLY loves kids!

Monday, May 25, 2009

Pics

Ok, let me try and organize all of these pics!!

First, there is proof that Charlie is immune to sugar highs:





For those of you who didn't catch that last one, he's in the car on the way home from church, sleeping with a sucker in his mouth. I know, really safe, but oh so funny!





Ok, then Memorial Day. We did a father/son Twins game with tons of friends.


First it was gettin' all ready in the jersey that Grandma found, and his hat, and all duded up.





Ohhhh! there's a sticker under here!





Everything had to be just right....







Then it was carpooling to the light rail.



Then we were on the train. He was so overwhelmed by the whole thing.





Then we were at the game, havin' fun.









We even got up on the jumbo-tron! (trust me, it's us)



And then we headed back home on the train. For Charlie, it was two GREAT train rides interrupted by some fun eating.....there was a baseball game?)




And then we had 30 of our closest friends over for a BBQ!

Much running after who ever happened to have the ball








The crew - "watchful" parents



And we topped it all off with a popsicle!



What a great day!

Tuesday, May 19, 2009

Feeling better

Hopefully we're done with that stomach bug! Emma is showing no signs, Charlie is feeling better, and Mommy is obsessively wiping EVERYTHING down with Clorox wipes, so we *may* be in the clear health-wise for a little while.

Here's the Before ...

And After! If you're well enough to play in the dirt, you're well enough to sit next to your sister again, right?
Here, you sit on the couch together and smile!


Ummmm, I was kind of hoping for a cute picture of the two of you together ... ya know, for the grandparents or something?

I'm glad Emma was entertained ...

But in your efforts to snuggle her, PLEASE don't knock her over ....

oh, well, we'll try again tomorrow.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I've been meaning to try to catch this on video for awhile, but life got busy.

By the way, thanks for all your encouragement about Emma's hearing. I knew stuff like this was coming, it's just the first time someone has said "She should be doing this and she's not" about any of her developmental stuff. Coming to terms with the fact that there will be possible delays out there in the future is different than actually being confronted with a here and now issue. I know there will be more, but for now thanks for your encouragement and prayers to get us through this one.

Anyway:

I can't take all the credit for this song. My mom (Nana) started it. When Charlie is at her house and she snuggles him before his nap she sings "Jesus Loves Me." Apparently (I found out when Charlie started singing over lunch one day), she adds a verse at the end that says:

Thank you, God, for Charlie.

Thank you, God, for Charlie.

He is such a special boy

And he brings his Nana joy.

When he sang this one day, I figured we should probably encourage some other verses, so he and I made up the Emma verse together. (she is such a sweet sweet girl and she brings light into our world)

The Daddy verse is all him! (Charlie, I mean ... truly, he came up with this one all on his own)

video

(hmmmm, he was wearing that same shirt last time i posted videos ... he does have other clothes, i promise!!)

You really do bring light into Mommy's world, Josh (even if I show it by calling you to tell you that you put the wrong brand of diaper on Emma when you got up to change her in the middle of the night ... sorry) Thank you for being amazing, honey!

Monday, May 18, 2009

to quote a blogger friend...

AAARRRGGGGGGGGGGGGGGHHHHHHHHHH!

Charlie's puking again. It's actually not really the end of the world. If I only let him eat toast and drink pedialyte he doesn't puke, and he's actually quite snuggly.

But I am TERRIFIED of Emma getting a tummy bug. Would that mean puking? (like for real) Would that mean messing up her Nissen?

My IRL friends will be the first to tell you that I used to be the mom who didn't care about germs. I believe childhood bugs are what build our little ones' immune systems. But we all know Emma is a different story.

And of course I'm tired and probably over-emotional (no, DEFINITELY over-emotional ... i considered doing a Not Me!Monday post filled entirely with stupid, insensitive, junior-high-level-emotional things I've said to my husband this week, but then got overwhelmed and decided to write this uplifting post instead:)).

So anyway, Charlie is asleep and Emma is (Thank God!) at St. Mom's

Charlie wanted to snuggle her this morning and I told him no, so he went into her room and brought her a little brown bear to snuggle instead while she's at Nana's

I love my kids and would REALLY like it if they were healthy! If you think of it, could you pray for my family today? I am praying that Emma be protected from the germs!!

Friday, May 15, 2009

And there goes the roller coaster

ARGH!

Remember when Emma was in NICU and she failed her hearing test?

At the time they did a ABR, which means they stick brain-wave sensing electrodes on her head and pump sounds into her ears to see what her brain responds to. They said she had a mild hearing loss. Then they did something I don't really understand to test the sound that makes it into the ear when you bypass the outer ear. Her hearing was fine when they did that, so the audiologist there was optimistic that if we could get tubes in her ears to drain the fluid that's there from the cleft palate that her hearing would be good. (apologies to anyone who DOES understand this process, because I'm pretty sure it's clear at this point that I DON'T)

She was a month old at that point.

Well, we are recieving services from the school district and we have a DHOH (deaf and hard of hearing) teacher on our team who recommended that we be set up with a sound field system to help her hearing until we can get the tubes in her ears. (basically a speaker by Emma and a microphone on me for talking to her when she's in her swing and I'm cooking or something)

In order to get this system from the district, Emma needed to be seen by the district audiologist.

The test they did was a little different. Emma and I were in a sound-absorbing room (creepy silent) with a speaker to our right and a speaker to our left. I sat in a chair with Emma on my lap facing a window where the aud. and the DHOH teacher sat and watched Emma's reaction to sounds. Obviously they wanted to see if she would turn her head in the direction of her name being called or whatever.

She didn't.

They called her name from the right. Nothing. They called her name from the left. Nothing. They played loud music. She sat there sucking her thumb. They blasted a siren at us after a period of silence to see if she would startle.

Nothing. And it was REALLY hard to watch.

So we have the sound field ... but do I have a deaf daughter?

I feel like I'm back to my pregnancy emotions. We knew something was wrong but we didn't know what and we didn't know if there was anything that could be done about it and we just had to wait. I think I could handle 'deaf' if someone could just tell me right now if that was the future for her or not.

There is still a possibility that this is from fluid and that the fluid has just congealed (for lack of a better word, i'm told) and made the sound more muffled ... but we don't see her ENT again until June because we're still waiting for her ears to get big enough to do anything about this, or to find out if there IS anything to be done.

What's hard is that I think she acts like she hears. She definitely doesn't turn to the sound of her name being called and that's developmentally concerning no matter what the reason, but, like, today Charlie was helping me play this game with her: she has this toy that plays music. I sat her facing me and Charlie held the toy behind either her right ear or her left ear and turned it on. She turned towards it. But could she sense her big brother (who she LOVES) was back there and she was looking for him?

All the professionals she sees are always talking about how social and interactive she is. She does "turn taking" with her little coos, she smiles and interacts and follows faces and looks for Mom. She gets concerned when I have to use my "discipline voice" with Charlie and happy when I sing, but is that her reacting to my body language?

I knew the next dip would come, and here I am, and it'll be ok, and even though I don't know the future, my Jesus is already there, so it WILL be ok

But that doesn't mean I'm not sad.

Tuesday, May 12, 2009

How we do some Emma stuff


[Heads up - this post is nothing but pictures of and talk about Gastrostomy tubes. Feel free to wait until something a little more fun comes along if this topic doesn't interest you :)]


The idea of doing this post came from the fact that I've been e-mailing with a new CdLS friend about G-tube cares and my e-mail is being silly about sending pictures.



But I'm excited to talk about what we do for a couple of reasons:



1) I love talking about my girl


2) I would LOVE to have a comment come back that says "Holy cow, you do THAT? We've found THIS is much easier" ... although I am finally feeling like we've kind of got things figured out.


3) I hope that this might inspire other CdLS bloggers to share some of their routines. How do you communicate with your non-verbal kiddos? What does family meal time look like? What exactly do you DO when Bailey walks on your roof? :)


And come on, you know you're curious even if your child doesn't have a G-tube. My baby has a clear plastic tail at all times, don't you wonder what's under there? :)


Well here we go! This is our general G-tube care routine:


If you ran into me at the grocery store, this is what Emma would look like, extension hanging out and all. Yes, we have the MicKey button (more later), so yes, we could walk around without the extension hanging out, but then I'd have to find a sterile place to put the extension back in to burp her if she gets fussy. This way, I just grab a bib or paper towel or whatever's handy and open the tube for a minute, let the gas out, close it, and move on with life.




[For those unaware; Emma's tummy was wrapped in such a way that she can't burp or throw up. But she still swallows air when she's fussy just like any typical child, and therefore fussiness leads to gassiness just like anyone else, so if she's fussy we need to burp her.]




Also, I usually have Emma in onesies or outfits that button around the bottom so that her extension can come out of her clothes closer to her leg. If I have her in an outfit that buttons up the front, she's grabbing and pulling at that tube in no time.



Sorry, Emma, we're showin' some skin, here, girl! :)




The white rectangle and blue tab is a Flexitrak. It's a flexible band-aid type thing that we tape her extension to so if she (or her brother ... ahem) gets ahold of it, it won't pull on the actual G site.





What I like is that if the extension does need to come off (for baths or for her to practice rolling or whatever), the tape comes off the tube without having to come off Emma. So we could leave the Flexitrak on and use it again next time we feed her. (the blue tabs are not sticky, so you grab those for opening and closing)



She does sweat, however, so she needs a bath every night, and just like a bandaid is not so great after it's gotten wet, the trak needs to be changed every night, too. Luckily they come in adult sizes, so we cut each Trak into a couple of Emma size Traks ... and luckily they come from our pediatric supply company so insurance picks up the bill!









So here's what Emma looks like after her bath (not so happy!!). The Flexitrak comes off really easily and not painfully with baby soap, her extension has been rinsed with hot and cold water, and she is READY to be snuggled and PUT TO BED! (baths are REALLY not her favorite activity)

"Mommy! Put me to bed!!!"




Here's Emma the Tummy Sleeper out for the night. We won't start her nighttime feeding for another hour or so, but the extension needs to be available so we can start the feeding without disturbing the girl. This is the other reason I leave the extension on all the time; she still takes two naps a day and her schedule varies, so I'd like to always be able to feed her at her next every-3-hour feeding time whether she's awake or not.



And I'll admit we don't always use the burping tube. If she's been fussy and therefore has some gas but her stomach is not full I'll usually just open up the tube for a little while into a bib or whatever's available.



At around 9, we give her Zantac (through the tube, obviously) and start her feeding. We do the overnight 'drip' for 10 hours because someone told us that if we pack the formula in ice, you can get away with hanging a bag of formula for 5 hours or more. This means only one of us gets up in the middle of the night. (originally we were doing 12 hours and getting up every 4 hours ... we were tired)


My husband rocks! He gets up every other night!


Figuring out how to pack the bag in ice took some jerry-rigging, but here's what we've come up with:


The bowl is for catching the condensation drips. There are about 3 bags of (melted, at this point) ice in there. If you want more details about this particular routine, email me, it's tedious :) Let's just say we're buying stock in Ziploc :)

How long do you guys let your formula sit out overnight? (Cuz I'm assuming if you've stuck with me this long through a very boring post, your child has a similar routine!)

Staci will never ask me another question ever again! :)

Saturday, May 9, 2009

CdLS awareness day

Again, I'm a bad blogger :)

I'm on my way to yoga and I'll try to do this more justice another day as this is a very busy weekend, but in honor of CdLS awareness day, could you do me a favor? Click on either the CdLS link on the side under Emma's Story or click on one of Emma's friend's pages.

Why? CdLS is rare and thousands of children go undiagnosed. These kiddos have distinct facial features (click on Emma's friends and they'll look familiar! :)), so the goal of the day is to have more people be able to recognize the syndrome if it crossed their path.

Please go see the joy on Mason's face at At Day in My Life or cheer with Hope as she learns to wave or see how cute Vinny is without his NG tube at Mi4Boys or check out any of the CdLS bloggers!

they all did a better job at CdLS Awareness day than i did ... sorry :)

Monday, May 4, 2009

Sing along with Charlie

video

Charlie burst into the Copacabana once in the middle of a Dr's appointment for Emma ... I have yet to live it down with the nurses there.

video

"You're a mean one, Mr Grinch. You have termites in your smile. You have all the tender sweetness of a sea-sick crocodile, Mr Grinch."

video

This last one is prove that we are still doing praise and worship around here! :) The three of us actually had a dance party to this Newsboys song on the radio last Friday. I finally got Emma to laugh while spinning her around singing!

Saturday, May 2, 2009

Emma laughs, Charlie picks dandelions, and Mommy attempts to explain the OT in the longest post ever!!!



Hmmm, where to begin?


First, the weather has been beautiful the past couple of days:









Apparently little boys collect Dandelions and put them in their dump trucks ... who knew? :)Daddy and Mommy did, however, receive their very first dandelion bouquet from the monster later that day. Is it sad that a little yellow weed brought a tear to my eye? :)







Next, Emma has really exploded in terms of playing with toys. Everything goes in her mouth, and she actually is starting to really enjoy some of her stuff!




Today, I had her hanging on to one toy with both hands, put a pillow behind her, and she didn't fall over when I let go of her and held only the toy! Pretty cool, huh? :)








[Before going on, you have to promise to IGNORE the background of these pictures. My house is an absolute disaster area! promise? ok]








I mentioned that Charlie makes Emma laugh like on one else can, right? I was finally able to get a camera during one of these play times today.



(I bet this one would be a really cute picture if I weren't trying to hold on to the moving targets while taking it!)

Charlie giving Emma repeated kisses gets the best smiles and giggles!


What? Can't hear the giggle? Well, just for you, because I love you, I even got a VIDEO :)

video

Not enough? I've got another one!

video

And finally, another Charlie tale:

We watched the Veggie Tales version of Joshua and the battle of Jericho today. It's good and silly and the Silly Song is very cute. I appreciate especially that the Jericho-dwellers are french and mock the Israelites Monty Python style and then throw purple slushies at them.

Anyway, Charlie was apparently confused on a couple points, as illustrated by the following conversation shared over a lego-building session following the movie:

"They knocked down their tower"

“God knocked down their tower because they were stopping the Israelites from getting to their home”
“They got messy”
“mmm-hmm”
“they gonna find a bathtub”

5 minutes later…

“They knocked down their tower”
“God knocked down their tower because they were stopping the Israelites from getting to their home”
“They gonna say ‘sorry’”
“No, remember the Jericho people were being mean to them”

(ummm, because if people are mean to you you're allowed to destroy their home? Come on, Becky, explain Old Testament to your two-year-old! You can do better than that!)


“They threw slushies at them”
“Yup, and they were stopping the Israelites from getting to their home”
“They got messy”
“Yup”
“with purple slushies”
“yup, but that part was just Veggie Tales being silly”
Pause
“They gonna take a bath”

30 seconds …

“They knocked down their tower”
“God knocked down their tower because they were stopping the Israelites from getting to their home”
“They gonna put it back up”
“No, God knocked it down because it was bad for it to be there” (Mommy’s losing theological ground on this one…)
“It fell down all by itself?”
“No, remember, God told them to play their horns and yell and HE would knock it down so the people could get into the Promised Land and they were good listeners and …”
“God knocked down their tower”
“yup”
“he gonna put it back up?”
“No, because the people there were mean” (Mommy is realizing SHE’S not totally clear about the theology and political justice of the story)
“They got purple messy”
“That was silly, wasn’t it?”

“They gonna take a bath”

By then it was naptime, so we went pee-pee on the potty and Charlie wanted to put the seat down when he was done and he pinched his finger in between the toilet and the seat … yes, I kissed the finger

I think my next answer (because it will come up again) is going to be that just like Mommy is allowed to say no to Charlie but Charlie is not allowed to say no to Mommy, God is allowed to knock down people's towers without saying He's sorry. Is that the right answer? Anyone?

Ok, fine, one more Charlie tale:

C: "I'm gonna drive when I get big"

Mom: "Really?"

C: "Yeah, I gonna take Daddy's keys and drive Daddy's car."

Mommy: "I see. Where are you going to go?"

C: "I drive to church."

Well, if he's stealing the car, I suppose at least he's taking it to church. :)