Wednesday, February 27, 2013

here we go again

I hate it when they have to open her up.

This surgery may be an even dozen ... I've lost track of how many times we've done this ...

It does NOT get easier, waiting on this side of that operating room door.  It is a bit more challenging, though, when they have to actually make an opening in her little body.

Emma's ear drum reconstruction and mastoid bone cleaning is at the end of the week.  Because the Not a Tumor damaged her bones, her fabulous ENT cannot just do his work through her ear canal, as he would if he were working on ear tubes or something.  He'll actually make an incision behind her ear.  He assured me, however, that the scar would not be noticable behind her ear once it heals

which is a HUGE relief ... we wouldn't want to put her modeling career at risk ...
:)

Please pray for my girl this weekend?  Specifically, I am concerned about her pain management.  Her tummy is not quite back to normal yet with the heavy duty meds she's on to resolve our most recent adventure, so I'm praying that pain meds won't be problematic as she recovers.

Also, we would appreciate prayers for Charlie.  He is currently crying because I won't let him wear shorts out in the snow ... if you know Charlie, you know that is VERY unlike him ... he told me today he doesn't like it when Emma has to be in the hospital.  Please pray for some awesome Jesus peace to surround that little guy's heart?

Thank you, prayer warriors!

Monday, February 25, 2013

How?

Yesterday, I participated in an incredibly bizarre ritual.

I went to a place where a group of over 100 people stood in a room for a purpose.  I know many of them.  I know some of them very well.

If you were to have looked around the room, whether you knew it or not, you would see the following:

You would see a man standing alone because his wife has been too ill to join him.

You would see a woman standing on one leg because she lost the other in a car accident

You would see a a recovering alcoholic standing next to his wife who stood by him.

You would see a breast cancer survivor.

You would see people battling depression

You would see parents with children in heaven

You would see parents with children who suffer too much on earth.

You would see me.

And do you know what we did?  It's the strangest thing ...

We stood up, and together sang a song

How can I keep from singing your praise?

No, really!  We sing of amazing love and grace from a powerful God.

Isn't that weird? 

Seriously, forget the common-ness of that ritual.  Why on earth would a group of people, each bearing unique burdens from a sin-torn and trouble-filled world, why on earth would we gather and sing the praise of a God who ... well ... let's be honest ... He could fix it.  He could have stopped the car accident.  He could have saved the child.  He could have nudged that amino acid at just the right time and stopped the "mutation" in my daughter.

But He didn't.

And we stand and say How can I keep from singing your praise ...

I'm sure one would be tempted to suggest that, to participate in such a ritual, we let our mental faculties take a vacation for an hour or so every Sunday.  Let me assure you that we don't.  Yes, the pain in this world and the belief in a good, powerful God who has loving intentions toward me ... I'm not going to deny the cognitive dissonance set up by those two concepts ... and, if you're interested, I'd love a rigorous discussion regarding the theology and philosophy of my faith-based world view.

But that is NOT what struck me on Sunday.

What struck me on Sunday was the faith.  The crowd of witnesses I am blessed to stand with, some having as many reasons as Job to question God, but for some reason, we've decided to trust.  We've decided to believe.  We've decided to lean on God.

We've decided that, whether he removes the pain or not, he is God and he is good and he is worthy of our praise.

Faith

I understand that it looks foolish.  I promise you, it's not.

But I'm not sure where I would be without the other people I have in my life who stand next to me, encouraging me by their mere presence to hold to that foolish-looking faith.

Dear friends, let us hold unswervingly to the hope we profess, for he who promised is faithful.  And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another.  - Hebrews 10

I am so thankful and so encouraged by the witnesses I am blessed to stand next to in faith. 

Thursday, February 21, 2013

Back to ...

normal? :)

Actually, the Bear is bouncing back beautifully!

She's been back to school now for a couple of days and they say she's doing very well.  We even took her to feeding therapy yesterday and she finished a bowl of baby food!

It makes me feel so good to know that the skills she's gained recently have solidified enough that almost a week in the hospital doesn't derail her completely.  I'm so proud of how far she's come.

She's so strong.  It amazes me

I'm thankful.

We're looking toward next week, when her fabulous ENT will be reconstructing her ear drum.  This surgery will earn her another night's stay at Spa de Children's.  And she will still be on some pretty strong medicine for her tummy, so we're praying that she'll be healthy enough for this procedure.

Today, I'm just very glad to have a happy Bear home :)

Wednesday, February 13, 2013

Kitchen table

I think, for many families, the kitchen table is sort of the unsung heart of the home.

It's usually sort of cleared off.  Except for the "to do" stack in the corner.  And the mac 'n cheese smeared at Charlie's place.  It's not formal, but it's ours.

Growing up, I remember doing homework at our kitchen table.  My brothers do, too.  That same table still stands in the same kitchen.  The words "Pakistan" and "Afghanistan" are accidentally carved into it's surface by a brother working way too diligently on (or pressing too hard because he was angry that he had to do his) geography homework. 

It's where life happens

Baseball strategy is explained and pumpkins are carved

And at most meal times, it's unceremonious.  Without trumpeting the event, family meals happen around the table and everyone just sort of settles into the warmth of belonging.

I haven't sat at mine in almost a week.

But that's ok. 

Our kitchen table this week is in Emma's hospital room.

You know how they say that Home is where the heart is?

Tonight, all four of us will eat together and then clear off the table for Charlie to do his homework while Josh and I discuss the day's events.  Yes, this will happen in Emma's hospital room.

But that's this week's kitchen table

Tuesday, February 12, 2013

Hospital

Emma is very sick and has been in the hospital since Saturday.

The details are GI related and can be shortened as follows: THIS SUCKS

Emma's tummy just doesn't want to play anymore.  We have medicine.  We are SLOWLY getting it moving again.  But she's been IV dependent for several days now.

Charlie has been very well cared for by people who love him, and he's been able to visit his Sweetie Worm, but tonight was rough.  He misses us.

We needed family time, so we had a family dinner in Emma's hospital room.  Because that's what you do.

When it was time to leave, he cried and wouldn't stop hugging me.

OUCH, my heart hurts.

The Lord is close to the broken hearted and saves those who are crushed in spirit - Ps 34:18


Friday, February 8, 2013

Can I play, too, Big Brother?

Charlie was playing with his animals in his room (I love this stage of boy-hood where he can hold his own with the big kids chasing a soccer ball, but still loves his Suppy Puppy)

Emma walked up to his bed and patted her chest and reached her arms up to him.

He pulled her up onto his bed.

He didn't know I was watching from the hallway :)

A few minutes later, he called, "Mommy, come see how giggly Emma is today!"









It's too bad you can't see Charlie in those last two pictures, Emma is laying down, looking up at him as he's about to tickle her.

(no, i don't have any update about her pain.  she was up for a little bit last night, but it was better.  i have a feeling this is going to be a longer experiment.  so thanks for those of you who asked ... i'll say she's "good enough" :) for now)

I am so thankful for the love my two kids have for each other.




Thursday, February 7, 2013

Lunch time!

Well, I tried an experiment last night.  Yesterday, I didn't let the Bear eat any real food by mouth.  She was tube-fed all her calories ... and she was TICKED about it!  She did NOT understand why I wouldn't feed her at lunch time and insisted that perhaps the food I was preparing for myself was hers ... and then I needed a shower and a change of clothes ...

ahem :)

But, the experiment yielded interesting results.  She slept all night without waking up sad. 

Everyone, all together now, "YAY!"
and then, "Oh ... "

As my husband pointed out this morning, it's just one more data point.  It still does not prove or disprove that the pain at night isn't new molars coming in.

But it's not a super exciting data point.

So my next experiment will be to SLOWLY re-introduce foods and see if Emma's tummy is upset.

Today, we tried baby oatmeal with her usually tube-fed formula.  Yes, I offered Emma food mixed with her icky-smelling vanilla flavored formula.

She loved it.  She was SO excited that she got to eat again!
And that, at least, makes me very happy.

it's about time, mom! put down that camera and give me that bowl!

seriously?!  i get to lick the bowl?!?!

THANKS, MOM!

I LOVE an empty bowl :)

So now we'll see how tonight goes. 
I lead an incredibly glamorous life

And I am thankful

As a side note, Charlie had a pretty exciting lunch today, too.  He "wasn't hungry" when I decided to sit down to feed Emma.  Then, 10 minutes later, he was "very hungry."

So I told him to make himself lunch :)

I sat and fed Emma and offered advice and answered questions, but my son used the microwave all by himself and made his very first easy mac n cheese lunch today!  Round out the meal with applesauce and carrots and I was feeling pretty triumphant!

He was very proud.

Seriously.  I love these kids.  We are so so blessed

Tuesday, February 5, 2013

Non-verbal, but not like a baby

One of the hardest things to describe to others is the concept that my daughter is "non-verbal."

Emma doesn't talk.  Yes, she says, "MAMAMAMAMA" to get my attention, but she doesn't have any other words.

She has a few signs (more, all done, Mom, etc), but they are very functional and very limited.



Sometimes she waves, and she makes it very clear when she wants you to pick her up :) She gestures.

But that's about it

Because of this limited communication, it's really hard to measure her cognitive abilities.

Anyone who has spent any amount of time with her, though, knows that there is more going on in her head than she is able to tell us about.

I don't know if she'll ever talk.

I do know she will grow and develop, though.  And one very common aspect of CdLS is a severe speech delay.  The gap between what she thinks and what she can tell us will get bigger.

This is obviously hard.  Yes, there are times I grieve the fact that I may never hear, "I love you, Mommy."  But, to be honest, I know she loves me, so the lack of expressions like those are NOT what is hardest about having a non-verbal child.

What I'm struggling with right now is the fact that she can't tell me why she was up whining most of the night last night, and for some reason, it's really hitting me hard that this is NOT like having a baby!!

Before a typical baby learns how to sleep through the night, there can be any number of reasons why she may cry at 3 am.  She may be wet, she may have pooped, she may be hungry, she may be gassy, she may be teething, the green beans she tried for the first time today may not be agreeing with her, she may have had a bad dream, her leg may have gotten stuck outside of the crib, she may miss her Mommy, she may have dropped her "lovey" ... or, depending on your parenting philosophy at the time, she may need you to NOT go to her so that she'll learn to go back to sleep on her own.  And parents must decide what to do.

(all of us who are mothers may need a moment right know to recover from the flashbacks of those exhausting months ... take all the time you need! :) )

Here's the thing about my Emma.  ALL OF THOSE TYPICAL PROBLEMS are still a possibility when she cries in the middle of the night.  They just aren't very strong possibilities.  With a typical baby, when they cry in the middle of the night ... yes, there is a chance something is terribly wrong ... but MOST of the time, they are fine.  With Emma, I don't have that consolation.  Experience has taught me to NOT assume she just misses me.

She usually sleeps through the night.

I have no idea how to categorize how old my daughter is, but she is NOT a BABY!  She does NOT just randomly have trouble sleeping.

So when she has nights like last night, when she was sad most of the night ... it is SO HARD to know what to do.

Her dentist says she's cutting new molars, but new teeth have never bugged her THAT much before.

Her primary Pediatrician Who We Love thought her right ear looked red, but our fabulous ENT feels that her ear is "just going to look like that" until an ear drum can be rebuilt.  Because we've already had those two appointments, and a red ear was all our PWWL could identify, I've sort of already played my "something's wrong with Emma and I don't know what it is" card.

So that leaves us with GI.  And let me tell you, GI is a very very difficult realm when you can't ask a child if her tummy hurts!  I think we're going to check the Nissen and make sure we're not back in reflux-land, and then explore food intolerances and allergies ... I'd HATE for oral eating of REAL food to be the thing that's actually causing her pain!

Remember when I wrote about chasing bunnies and fighting dragons?  The longer Emma goes without talking, and the more medical "situations" we are faced with ... the harder 3 am is.  I'm feeling really uncertain right now about whether or not something is wrong with my girl.

Oh, how I WISH she could talk.

Friday, February 1, 2013

you should see the other guy

This kid is all boy!

You know how you learn something new every day?

Today, we learned that, when you build a snowman out of nice, soft, fluffy snow ... he does not always remain nice or soft or fluffy.

Especially in January in the Frozen Tundra when temperatures hover right around freezing and slush turns to ice and back again several times in the course of any given 24 hour period.

So this ...



is what happens when you try to tackle a snowman football-style the day after he was built.

I'm not sure if it's visible in the picture, but he's got quite a little shiner under his eye.

I told him to tell people, "you should see the other guy."

In the battle of Charlie vs The Snowman:
Charlie = 1
Snowman = 0