Sunday, November 29, 2009

Prayer Warriors!!!

We just got back from a WONDERFUL long weekend in Duluth with Josh's folks! I'm always so refreshed when I come back from "up north." I was saying to Josh yesterday that it's one of the few places where I can totally unplug and don't miss Facebook or Blogland or e-mail or any of that ... it's good stuff to have good family :)


Charlie requested to "just go to bed" at 6:00 tonight. He had a fever of over 102!

Emma is acting a little less sick (although both clearly have colds!), but she has a fever of 100.6 ...

So we're stuck in the house until Friday, when we have to go see our PWIL (hmmm, changing our Pediatrician Who I Love to an acronym doesn't really work well, does it?). She needs to sign off that Emma is healthy enough for surgery on the 9th.

So I'm praying for sanity for me and health for the kids!

Wednesday, November 25, 2009

Happy Thanksgiving, everyone!

My quirky little internet community is definitely on my list of things I'm thankful for this year!

God bless you!

Sunday, November 22, 2009

A deliberate, flagrant advertisement

for Tamara Fladung Photography.

Many of you know my dear friend Tamara and that she has taken pictures of my kids before. She has started a small photography business out of her home.

This woman has an incredible heart for children with special needs and she is an incredibly talented photographer.

If you don't have a child with special needs, imagine how hard it would be to take your child to a photographer and have then not respond when their name is called or not laugh at the typical attempts to produce a smile or just lose it entirely because the situation is too overwhelming for them. There are some beautiful children out there who are very difficult to capture at their best in a typical photographer setting.

Tam, however, let me hide underneath a backdrop during a photo shoot to bounce Emma on my knee to get her to laugh! She waited patiently until she found that Emma found the scarf Tam was wearing was hillarious and took it off and caught her attention with that! I ask you, would a department store photographer let you do that?

I really had not thought about how difficult a photo shoot would be for a special needs child, but she was so patient and took the time to make sure I was happy with the images of Emma that were captured.

Because, let's be honest, on any given day, any child may or may not smile for a camera. However, a typical baby still looks cute not smiling. But I feel like a not-smiling Emma looks more ... affected ... somehow.

So locals, if you know a family with a child with special needs, would you consider telling them about this sweet woman of God who will take the time to make a photo shoot a really positive experience for them?

And, of course, she doesn't just take photos of special needs children, she's done some amazing maternity shots and family pictures as well, as you can see on her photography blog.

But I have to believe that there are families out there for whom it would be an amazing blessing to learn about someone who will take the time to get pictures like this:

Saturday, November 21, 2009

Ups and downs

I'm stinkin proud of both my kids today, but I'm also intensely frustrated and I'm just going to go ahead and admit it!

First, Charlie
UP: He's figured out how to read short words! I'm so proud!! I can write CAT or DOG or DAD or PLOP in front of him, remind him to sound it out, and he can figure out which word it is! Go, Charlie!


FRUSTRATION: He's in a tough stage right now. I've heard it said, "terrific twos, terrible threes" and I think we're well on our way there. He's not quite 3 yet, but he's SO in that "not technically defiant but REALLY pushing the envelope" phase. If you ask him to go clear his place at the table, he will immediately start heading in that direction ... the slowest way possible (moonwalking backwards, anyone?)

So I'm just venting. It's been a little bit of a tough morning for me with the boy, but I AM incredibly proud of him 98% of the time

And now, Emma.

UP: She's figured out how to do something really exciting. She's been able to sit for awhile, and you've seen the videos of her version of getting around and figuring out how to get to standing, but until yesterday, she hasn't ever gotten INTO a sit by herself. She would be lying down and be able to get about half-way there, but ... hmmm ... how to describe this. Ok, if you were lying down on the floor and wanted to sit up, your hands would be involved in getting you there, right? Well, Emma's arms are shorter, so when she's all the way sitting, her hands don't reach the floor. So she'd get herself onto her hip in what I call the "senior portrait" pose, but then wouldn't be able to get all the way sitting up. Try it! It requires a LOT of abdominal strength no matter how you do it.

But when I went in to get her after her morning nap today, she was sitting up in her crib!

I'm particularly proud of this milestone because it's the first one that I feel like I "earned." We've been working with her OT on getting those muscles strong enough to do this, and she does NOT like the exercises! But I've been doing them and now she can do it! Go, Emma!


FRUSTRATION: I know all of us in the special needs' community come face-to-face with our children's differences unexpectedly some days. Yesterday was one of those times for me. A dear friend offered to take Emma's one-year portraits in her home yesterday, so I packed up her cutest clothes and was really excited.

This friend set up a backdrop and got the camera all ready and I sat a VERY cute-looking Emma down where she told me to and we started the photo shoot.

Like ANY photographer would, she called, "Emma! Look up here, sweetie!"

And I knew Emma wouldn't respond to that, so I had to say "She doesn't answer when her name is called."

I was SO thankful that I was with a dear friend who has a heart for special needs kiddos. She was so patient and took so much time figuring out how to get Emma's attention and make Emma smile and I think we got some cute shots (and I'm sure I'll do a different post later with those pics), but it made me think how awful it would have been had I just gotten her all dressed up and taken her to Sears to get cute little holiday pictures taken.

It was sad to have to be face-to-face with a very practical problem with Emma's cognitive delays. Peek-a-boo isn't entertaining yet, she doesn't giggle at a silly face like most kids. She's happy and social and smiles and giggles all the time, but not like a typical kid would, and not WHEN a typical kid would.

Sometimes I just forget that she's not normal ...

Friday, November 20, 2009

Hello, there!

My camera is, again, quite suddenly no longer on speaking terms with my computer. argh.

But I do have a quick video!

My father and his wife optimistically gave Emma a bib (amoung other things) for her birthday. Emma has taken it as a sign that it's time to really start eating :)

Chomp, chomp, baby girl!

We're all feeling much better, recovering from our colds and such.

Other than that, we're just truckin along ... trying to think of something profound to say ... hmm ... nope


Monday, November 16, 2009

Lots of little girl pictures

First, Emma really is a great sleeper, but if I put her down awake and can hear her having trouble falling asleep, I can be pretty confident that this is how I'll find her:

She gets stuck! And don't judge me for grabbing a camera. :) I did fix the situation right after I took the picture, I promise!

Now, back to B-day party day!
Seriously, could this child be any cuter?!?!?!

Please note the ADORABLE tights and shoes look ... this not-so-girly Mommy doesn't do this all that often ...

And as an aside, this was the other option for party attire:

My friend Melissa sent this up from one of those Southern States where little girls actually wear such things (I'm told) :) Just kidding! This adorable skirt WILL make an appearance at church as soon as Emma's petite little waist will keep it from falling off!

Grandma wanted a picture with just her and the birthday girl:

guess who? :) Charlie really was a very good big brother on party day ... considering he's 2 ...

Ahh, there, Grandma and the girl!

A friend of Josh's mom knitted mittens for Emma for her birthday:

It really is hard to convey how tiny those little hands really are! They are very soft and fluffy mittens, though, they'll work someday :)

Emma got lots of adorable clothes, some fun blocks and balls that she is really liking, and a Tickle-Me-Elmo doll that I have yet to get pictures of because every time we bring it out Charlie wants to be a little too helpful in "showing Emma how it works!" Seriously. That's what he says. Can I show her how it works ... ahhh, negotiation ... anyway, she gives it kisses and it's cute and I promise, Nana, I'll post pictures as soon as I get them

This is CHARLIE'S favorite of Emma's presents:

It's a Winnie-the-Pooh riding train with lots of buttons and lights and fun things to do.
Notice in the above picture he's helping her "hold it still" (with the additional help of Nana's foot...) while she plays with it. Yes, yes, Charlie, you're very helpful, don't let anyone tell you otherwise ...

Emma is doing a great job of learning cause and effect and she's enjoy this toy quite a bit. I think the fact that Charlie plays with it "with her" might be part of the appeal, as well :)

"Did you see that? I did it!"

And finally, Emma is enjoying her smallest (size-wise) present as well. Her aunt and uncle got her some clothes and this tiny little turtle. It's wonderful because Charlie doesn't care about it one bit! :)
Emma gives it kisses:

All together, now ... awwwwwwww

At Emma's 1 year well-child check-up today, she was 11 lbs, 13 oz and 25 inches long. Both of these are around the 75% for a child her age with CdLS, so she's doing great!

Also, I feel like I scored some "Mommy instinct" points with myself in the last couple of weeks. When Emma has weight checks, I usually get out my calculator and figure out how many calories per kg she should be getting and adjust her feeds accordingly. However, Emma has not had a weight check in awhile. Last week, it seemed like she had gotten bigger and she didn't seem full at the end of a feeding, which is hard to tell because her appetite has NOTHING to do with when the pump stops. So last week, without my trusty calculator, I increased her bolus (daytime meals) feeds. Today, when we weighed her and calculated her calories, the adjustment I had already made was correct! This probably doesn't sound like an accomplishment and I'm not sure I'm explaining it well, but it felt REALLY good to me to know that I'm figuring out how to read her cues and feed her according to whether I think she's hungry and not so much dependent on a calculator. The scientist in me struggles with this a bit, but the Mommy instinct definitely got some positive reinforcement today :)

The other good news from Emma's appointment today is that her lungs do sound clear, despite a pretty good cold that appeared quite suddenly on Sunday. We're praying that not only does this cold not turn into anything more serious but that she gets healthy before her surgery in Dec. I really would hate to have to put that off, we may have to become hermits sometime soon to keep germs away from our little princess!
Other than that, life is good! God bless you!

Saturday, November 14, 2009

She ate Cake!!!

I'll post more birthday party pics later, but I just wanted to share that God answers prayers big and small. I have been praying for awhile that Emma would eat cake on her first birthday. It's a silly prayer, I know, and she didn't eat much, but for some reason it made me really happy to see her face smudged with icing today. :)

Blue icing, in case you were wondering, because Charlie informed the lady at the bakery that Emma's favorite color was blue ... I might have been crying a little bit at the time (can you tell this birthday is a little emotional for me???) so I was totally fine with Charlie telling the lady that the cake should say "Happy Birthday to Emma IN BLUE"

Thanks for all your comments and birthday wishes this week! Have a blessed rest of your weekend!

Thursday, November 12, 2009

A year ago today, a miracle occurred!

The miracle I’m talking about is NOT the fact that doctors said she’d be 3.5 pounds and she packed on a whole pound in those last couple of days in utero, although I do think God had something to do with that!

It’s also NOT the fact that I was to be induced but I went into labor naturally and had the EASIEST delivery on the planet, although I’m quite certain He also had something to do with that, too.

Also NOT the fact that all of our doctors and specialists we had met with to prepare for Emma’s birth just HAPPENED to be on-call that night so I got the comfort of familiar faces, although I truly believe God had something to do with that.

It’s NOT even the fact that, although she was prepped for heart surgery, she has, since birth, had normal echos with NOTHING WRONG with her heart, although I’m POSITIVE God had something to do with that as well!

Because I understand with her small head and arms it would be easy to measure wrong in utero, and I’m sure her size contributed to the easy labor and delivery, too, and I know that sometimes heart defects do resolve themselves.

But there’s a bigger miracle, more indeniable, impossible to explain away

The miracle is in the rest of us.

The miracle is in the deeper meaning we find in “I can do all things through Christ who gives me strength.”

The miracle is in the way the Body of Christ came around our family and supported us in incredible ways, and in the ways we so palpably felt those prayers.

The miracle is in the peace that passes understanding while difficult medical situations come up.

The miracle is in our marriage, which used to be “good enough,” but when stress arises, good enough isn’t good enough, and suddenly I see my relationship with my husband growing in ways it never would have had life stayed “normal.”

The miracle is in the level of dependence on my Heavenly Father that I never thought possible, knowing that we truly have NO IDEA what the future holds.

The miracle is in Charlie showing such care and love for his special baby sister.

The miracle is in watching other kids love on Emma.

The miracle is in the world that has opened up to me.

Thank you Jesus for Emma. Happy birthday, little girl! We love you!

Wednesday, November 11, 2009

A year ago

A year ago today I was fairly certain my lunch wasn't settling. I was having AWFUL cramps and indegestion. :)

At around 10:00 pm, Josh was finally able to convince me that cramps from gas don't reliably come every 10-12 minutes for more than an hour, so we called our OB.

I was in the bathroom, Josh was on speakerphone with the doctor. Somewhere in the following conversation, a boldness I had not previously experienced in myself was born. I remember it distinctly:

Dr B: How far apart are the contractions?

Josh: Every 10-12 minutes.

Dr B: Well, we usually don't have patients come in until their contractions are closer to 5 minutes apart ...

Me, from the bathroom: I'm ready, I want to come in NOW.

Never before had I contradicted a doctor. I had no idea at the time, but God had just birthed in me a bravery and boldness I will use more than I ever imagined.

But it was only Wednesday! We were supposed to have a baby on Friday!

I had no idea how much 'supposed to' had already been thrown out the window.

Tuesday, November 10, 2009

A year ago

A year ago today we were filling out paperwork for the imminent arrival of our little girl. There were questions the whole family had already discussed: "Who may we have permission to release information to while you are in Labor and Delivery Recovery and your child is in NICU?" The grandparents and aunts and uncles were prepared for Charlie care and coming to see Emma.

But there was a section of this paperwork I never filled out:

Who would you like to be permitted to enter the room should it become clear that your child will not survive?

Would you like a nurse present at the time of passing?

Do you have a name chosen for your child? May we use it after death?

It'd like to say that because of my deep faith I just knew that God would take care of Emma and we wouldn't need to have answered those questions. Yes, I had prayed, and yes, I was filled with God's peace about the situation, but let's not over-spiritualize the fear related to this paperwork.

It was Tuesday, we were going to be induced on Friday, and I just couldn't bring myself to answer those questions.

Sunday, November 8, 2009

A year ago ...

A year ago today I had a high-level ultrasound on my little unborn daughter. They determined that she was not thriving; she had stopped growing due to an issue with our umbilical cord and would be born weighing approximately 3.5 lbs. We were prepared for two different heart surgeries for multiple heart defects and a surgery to correct a diaphragmatic hernia, not to mention a very long NICU stay. An ENT would be on call in case her small jaw caused breathing problems. Our neonatal consult left words ringing in our ears; should she make it through "a rocky start," "her cognitive future is ... murky"

That was Monday, they would induce on Friday. I was 35 weeks pregnant.

Thursday, November 5, 2009

I must admit ...

as frustrating as it is that some days Emma eats and some days she won't ...

it's a lot less messy when she doesn't! :)

Sunday, November 1, 2009

Halloween fun! :)

The world needs a hero ... I AM THAT HERO! They call me ... LARRY BOY!
Grandma and Papa came down from Duluth and a wonderful time was had by all at our church's Pumpkin Patch Carnival.

Charlie was Larry Boy, Emma was an adorable pumpkin princess ... and Mommy ... well, Mommy was ...


And Daddy has a sense of humor as well :)

The carnival was lots of fun. Lots of silly games to be played and candy to be won.

Even Emma got in on the "pick a pumpkin" game.

"Oooh, what's in there?"

"Wait! Why are you taking me away from the shiny, plastic, clearly chew-able pumpkins???"

This was fun; there was a booth where kids made ink thumbprints and one of the high schoolers volunteering at the carnival (I use the word "volunteer" lightly, they were paid handsomely in candy!) drew pictures arount the thumbprints.
The flower is Emma's. I heard the girl bragging later that she got to do Emma's thumbprint. I LOVE how much Emma is loved at our church!!

And what carnival is complete without giant inflatable bouncy things? There was the traditional bouncing castle, of course, but more interesting is this caterpillar. I couldn't get the whole thing in the camera; it take up most of the gym. You enter the caterpillar at his mouth and climb through slides and climbing walls and such, and then you exit ... at the ... um ... end of the caterpillar. Am I the only one immature enough to giggle at that?

Charlie enjoyed it the second, third, fourth, and fifth times he went through ...

The first time, however, he was a little unsure about going into this big thing by himself. Mommy, of course, was brave enough to join him.
The inside was, indeed, fun.
But I had a little trouble exiting the caterpilar ...
I had to try more than once because I almost lost my pants.
And then I couldn't stop laughing long enough to muster the strength to stand up!

The things we do for our kids, amen? :)

Hope you all had a happy Halloween!