Friday, November 30, 2012

A hospital bag night; a thankful day

Emma is sick

Up most of the night, screaming in pain, breathing sounds like Darth Vader, coughing and choking and retching and gasping until Mommy and Daddy run to open the airways, fever, not enough Tylenol in the world ...


I know I'm not the only Mommy who wonders when it's time to call 911.  I don't want to look foolish if she's settled down by the time we get to the ER, and I don't want to expose her to hospital germs unnecessarily, but I also don't want to leave her in pain all night

So we wait and see.  We do our best all night, running to her room and trying to wake up enough to remember when we can give another pain med dose.  We had an appointment with our Pediatrician Who We Love in the morning anyway, so as long as we were able to help her with her clogged airways, we didn't need to rush her in last night.

She finally settled for awhile around 4 am.  I got up at 6 to shower and get ready for getting Charlie off to school. 

And pack a hospital bag.

Deodorant, pj's, contact lens case, clean underwear, toothbrush, slippers ... all assembled quickly ... we've done this before ... pack the essentials just in case ...

It was a hospital bag night.

coffee coffee coffee ...

After getting Charlie off to school, we went to visit our Beloved Pediatrician.  Seriously, I am so thankful for her!  We checked Emma's O2 sats; I panicked at first because Emma was doing that breath-holding breathing people do when they are in pain ... so her sats started in the 70s ... but then they recovered.  She listened to her lungs, and thank God they sound clear.  Emma's ear is angry, though.  During the exam, a piece of wax had to be cleared out of her ear.  Just brushing up against it made the granulation tissue bleed.  Poor baby.

When all was said and done, we landed ourselves with an upper respiratory infection, affecting sinuses and ear. 

We were able to do a round of IV antibiotics in the clinic; they just gave her a shot in each leg.  We're back to oral abx for the next week.  I am SO thankful for medicine!  Seriously, I am so so so full of gratitude that we can make her feel better when she's sick. 

And I am so so so so SO thankful that the hospital bag isn't going to be used this time around.


Emma needs surgery to get rid of this granulation tissue, but she needs to be healthy enough for surgery.  This infection needs to NOT go into her lungs, because she can't go under anesthesia if her respiratory system is compromised in any way.

And we all know that the medicine that is required to make the infection go away is NOT good for a Bear's GI system

So we're praying for her lungs and we're praying for her tummy.

And I'm praying for some sleep for all of us.  Soon :)

Wednesday, November 28, 2012

Wishing Star

Over peanut butter and celery today, Charlie re-opened a topic of discussion that I STILL don't know the right answer about ...

"So, Mom.  Yesterday in music class we were singing a song about wishes and we got to take turns making up verses about what we'd wish on the wishing star!  You know what I wished?"

"Hm?"  (I'll be honest, I was a bit distracted.  Emma is doing GREAT at feeding therapy, but the skills are not translating to home ... Emma had no interest in the PuffCorn I was trying to feed her ...)

"I said that I wished my sister didn't have CdLS!"


"Oh!  What did your teacher say?"

"I got to sing my verse of what I wished!"

"Did your teacher ask what CdLS is?"

"I don't really remember..."


"What would you have said if she asked you to explain it?"

"It just means she eats differently and her brain works differently and she's cute and little and I love her!"


"I'm glad you love her, buddy.  She loves you, too."

I'm a little done today.  I'm certain that the reason this was on his mind yesterday is because I made him late for school.  I made him late for school because Emma had finally gotten her MMR vaccine on Monday and yesterday, not 14 hours later, she woke up with a horrible rash from head-to-toe.  I knew it wasn't life-threatening or anything, so I wasn't panicked, but I was playing phone tag with our PediatricianWhoWeLove trying to determine if this was an emergency or if she needed to be seen in clinic or if she could go to school.  It was stressful.  And Charlie was late for school.

He rolled with the punches as well as he always does, but I'm sure the "specialness" of his sister was on his mind yesterday.

And today, I'm done with it.  I'm done with the theology of disability.  I'm done with the lack of "correct" answers.  I'm done with the stress and the hoops to jump through and the appointments and the constant state of ALERT because of whatever Emma's poor little body will have to endure next.

But God's not done.  He's still here and He's still good.

Charlie and I were singing Christmas Musical songs together this afternoon.  The following lyrics brought me to tears

Still wise men go seeking him when the way is dim
His light is there to guide
It's true for all of us
No matter what
He'll never leave our side and forever His light will shine.
The star will shine, showing the way
Lighting up the darkest night
This faithful guide won't lead you astray
Darkness will never hide His light

 Her rash is clearing up and she's sleeping well. 

"Silly Mommy, everything's gonna be just fine!"
But even if the reaction had landed us in the ER, He would have been there, too.

The people who walk in darkness have seen a great light.  On those living in the land of darkness, a light has dawned ... For unto us a Child is born ... (Isa 9:2,6)

Monday, November 26, 2012

Quick update

Hoping Thanksgiving was good to everyone!  It was wonderful for us :)

But now we're right back at it.

So, remember that ear infection?  We did end up doing a round of antibiotics because the drops didn't clear it up. 

Then we saw the ENT last week, and he said that there was still gunk in there.  He needs some time with Emma's ears while she is under anesthesia to dig out the granulation tissue growing in her ear canal.

So she's scheduled for surgery next week.

yuk yuk yuk

We're praying that this will be pretty uneventful.  I'm always nervous when I hear about granulation tissue in her ear canal because of that whole facial paralysis thing ... but we're hopeful that with her ear canals being bigger now and the fact that we caught it in time ... we're hopeful that this can be a very boring trip to the operating room :)

Thursday, November 15, 2012

My Psalm 42

I am thirsty, so thirsty.

As a deer pants for water, so my soul thirsts for you

I am down

Even songs make me cry

But I remember You

Why am I down?  Why is my soul so disturbed within me?
I will yet praise the Lord
My King and my God

I had a bit of a down day yesterday.  Nothing bad happened.  Emma kept messing with stuff she knows she's not supposed to mess with and then laughing about it.  There have been more difficult things than that in my life, but I was unhappy.  It seemed appropriate; a friend of mine referred to days like that as "Holland Days."    I was downcast, oh my soul.

A CdLS friend of mine posted in our support group, asking for prayers for her daughter's surgery.  It made me remember to back when Emma had her first ear tubes placed.

And the fun thing about having blogged during that time?  I can go back and read about God's faithfulness (click here if you're curious :) It was fun going back and looking at pictures of my kids when they were little-er)

Charlie and Emma, ages 1 and 3 ... I still have no idea what those stickers are ...

I love how the Psalmists seem to always talk about remembering.  "My soul is downcast within me; therefore I will remember you." - Ps 42.  I need to be reminded to remember.  God has a pretty good track record with our family, if that makes sense ...

Our little family has much to remember about God's faithfulness.  I'm thankful for his word today, reminding me of the importance of recounting and remembering how good He has been to us.

Sunday, November 11, 2012

Happy Birthday!


"Mommy, exactly how necessary is this tiara?"
is FOUR!

She is strong

She is sweet

She is silly

She is lovely

She is an instrument of God, refining all who love her, helping us all become so much more.

Happy birthday to my little miracle.  May God bless you, Emma Bear!  I know He has immeasurably blessed me through your little life

Saturday, November 3, 2012

We speak ...

... Emma's language.

This, for example,

is her way of saying, "Mommy, I have an ear infection."

Praise God, however, that her ear tube seems to be working in that ear and we can just do a round of drops, instead of oral antibiotics, thereby NOT adding to the GI wackiness already plaguing our house.

She's feeling much better already :)