Settling in

You probably won't hear from me everyday.  Life in the hospital gets a bit monotonous.  

Eat, play, read books, dispense Cheerios.  Repeat.  I also repeat the same words to multiple doctors and nurses and therapists who visit throughout the day.  "Still no seizures."  "She's doing pretty well."  "Yup, we just wait."

Elsie reaches into her hair and scratches often when she's trying to sleep.  So I've been sitting or lying next to her and singing her to sleep.  It's sweet and it's bringing me back to the days I sang and rocked Bella to sleep.  

Some of you may think I'm strong to be handling all of this.  I'm really not.  The words of the songs I sing are true. 

"Jesus loves me this I know...little ones to Him belong.  They are weak, but He is strong."  Elsie's not the only "little one." I'm little too.

"How deep the Father's love for us.  How vast beyond all measure."  Because he first loves me, I can keep loving. 

"Through many dangers, toils and snares I have already come.  Tis grace hath brought me safe thus far and grace will lead me home."  His grace is everywhere.  All over my life and this crazy story that I never would have chosen, but can honestly say I'm thankful for it.

I sing the songs to remind myself of the God I'm clinging to in desperate times.  Sometimes I sing them with tears, sometimes with great joy.  But I will keep singing.  Wonder how many times I'll be doing it tonight.  

Today was filled with lots of...

SMILES!  

Elsie loves her new chair and played a lot today.  She took a great nap this afternoon too.  We are thankful.  

However she and I are also engaged in an ongoing battle.  She tries to scratch up under her bandage and I push her hand away.  This battle was absolutely no fun from 2:30 to 4:30 this morning.  Please pray it does not ensue again tonight.  Please. 

Day 3

Today was rather refreshing for me.  I spent lots of time playing and walking around the hospital complex with this little cutie:

Elsie got lots of Grandma time.

While I was in the room, Elsie got some time with a speech therapist.

And she got a sponge bath.

That heavy ponytail is annoying for all of us.  And as you can see Elsie's left eye is very swollen.  They say the swelling should go down by tomorrow.  She ate much more today.  She had a great nap this morning and is resting well now.  We also heard that as they're observing her brain waves they see abnormal activity from the left side, but none from the right.  That's good news.  They also told us that her seizure medication should be fully out of her system as of dinner time this evening.  So, bring on the prayers for seizures! 

All in all, we're doing pretty well.  But in the words of Emma, "I miss my daddy!"  It's hard to be apart.  Really hard. 

O's make it all better

This is the mantra Elsie was singing today.  O's means Cheerios, Fruit Loops and generally any crunchy cereal.  They are Elsie's comfort food, and she ate three travel sized containers of them today.  I'm so glad she felt like eating because last night was hard for both of us.  She was vomiting off and on from 10pm to 4am.  Then she squirmed out of her bandages in the morning and those had to be changed, which she screamed through.  Finally at 9am, I was able to get out of her bed and think about what I needed.  

The daytime got a lot better.

She had a special visitor! This hospital is amazing.

PT and OT friends played and got her out of bed...

...and into Mommy's lap.  Oh how I cherish the snuggle time she sits still with me.  This never happens!

This evening was a little rough.  Her face is swollen and she can barely open her left eye.  She was really agitated by everything attached to her.  We found out she broke the record for our nurse on the number of dressing changes she's had to do in one shift.  She's only required to do it once.  Elsie had it done four times today because she's squirming out of it.  She doesn't pull it off, it just slides up as she moves lower and lower in her bed. 

So, please pray that both of us would get good rest tonight, that her pain would lessen and she begin to eat meals tomorrow, that we'd figure out how to entertain our little mover and shaker...and of course that she'd have seizures soon! 

One more thing...not sure if you all are aware that it's almost exactly a year ago that we went through Emma's surgery, in this same hospital, staying on this same floor.  While I don't like that hospital living is becoming so familiar, it has been fun to see some of the same staff again.  And especially when Emma is here and they can see how well she's doing!  Makes me wonder what Elsie will be like a year from now.  :) 

First surgery--done

A few before shots:

"She did wonderfully" was just the news I wanted to hear after waiting all morning while Elsie was in surgery.  They took her back about 8am.  At 12:30 or so I got the call that surgery was done.  But then I didn't get to see her until about 2pm.  That last wait was a hard one.  Here's what she looked like:

Now we're in her room and she's all wired up.  These grids in her head are a whole different ball game than the EEG monitoring of the last two hospital stays.  Lots more wires = lots more weight.  

She can't move around much.  She doesn't want to right now. But when she wants to she won't be able to because it'll pull and hurt.  That backpack alone is half her body weight; I have no idea how much that ponytail weighs.  We need her to have seizures fast so we can get these out of her head! 

Today she's been in and out of sleep and crying and whining and whimpering when she's awake.  So hard for me to hear.  I say, "Mommy's here.  It's okay."  But really, what I really mean is "I hope it will eventually become okay, but right now I know it's awful!"  She's in pain that they're controlling, but we're told it'll get worse before it gets better.  Tomorrow is the worst apparently.  So please pray I get some sleep tonight.  

Thanks, friends!

"Ignorance is bliss"

Isn't that how the saying goes? I'm not too sure...

Elsie has no idea what's about to happen to her.  She cognitively just can't understand.  In tears tonight I spoke the words, just so that she'd hear them.  "Your dad and I love you so much.  We're doing what we think is best.  Tomorrow will be a hard day for you. You will wake up with owies.  But Mommy will be with you.  I love you so much sweetheart."

Today we played all day.  I needed to; they needed to.  It was fun and it got our minds off of tomorrow.  At the end of the day a friend met us.  This friend knows what it is like to live with a child in the hospital.  She knows what it's like to make hard, seemingly life altering decisions for your child.  She knows because she's done it.  And God knew that I needed her today.  I needed to be reminded that I'm not alone.  We have so many people loving us and supporting us.  To all of you who have prayed and sent messages and served our family in so many ways...from the bottom of my heart, thank you.

Above all, we are not alone because the God of the universe who created Elsie and knows her and loves her infinitely more than I ever can...He is Immanuel, God with Us.  

We're back

In the land of sunshine and palm trees.  The girls are swimming in grandma and grandpa's pool.  All is right for now.  But Elsie has no idea what is coming. 

Our travel down here was just fine.  It was tiring and stressful at times, but overall they did great.  Our connection to the second flight couldn't have been smoother.  We got off one flight and walked two gates to the next one.  

Our appointment this morning went well. We've been seeing the epilepsy doctor all year, but today we met the brain surgeon.  He was kind and personable and explained everything in a very matter of fact kind of way.  "We will cut a C-shaped incision and open her up and put the electrodes in.  Then we wait for one or more seizures to be sure we know where the abnormal tissue is.  Then we take that part out."  There was a little more to it than that, but that's the main idea.  

Q: How long we do we wait for a seizure?  They aren't daily.  A: As long as it takes.  She will have one.  The longest they've waited is about a month.  Q:  What if she just doesn't have one?  A: One time in the three years he's been at this practice has that happened.  The child's EEG was miraculously normal.  And so they went back in and removed the electrodes.  Q: What if she yanks on these wires coming out?  She's really active.  A:  Lots of kids are. They suture the wires to her skin.  If she pulls, it'll hurt.  

So that's what we know.  Now we enjoy the week until the fun has to end.  Monday we go back for pre-op blood work.  Surgery is Wednesday morning.