Those funny little things...

The other day, Emma told us that something was "fantastic."

Her favorite song is The Lumineers song, "Ho hey," mainly so that she can "sing" the ho hey part.  I've yet to get it on video, but instead of singing, "Hey! Ho! Hey!," she just says, "Ah!" over and over.  So she rocks from side to side bouncing her arms up and down saying over and over, "Ah!  Ah!  Ah!  Ah!"

Because Emma can't walk or move her legs very well, she can't throw herself on the floor and kick and scream out a temper tantrum.  Instead, she does doughnuts in her wheelchair or stander and throws her head back, until she gets dizzy and things look funny dizzy and upside down....so the crying turns to laughing.

In the car the other day, she burst into laughter in the back seat.  Gut-busting laughter.  I asked, "What's so funny?"  "Stuffy.  Stuffy's so funny," she replied.  Apparently, Stuffy, the dinosaur in Doc McStuffins, was particularly funny that day.  The next evening, I was brushing her teeth, and she randomly burst into laughter again...laughing so hard she couldn't breathe and almost lost her balance.  I thought maybe I was tickling the inside of her mouth?  So I asked what was so funny...."Stuffy.  Stuffy's so funny."  I love that she's having her own little memories of her favorite TV show.

Little girls have tea parties, and Emma is no exception.  She loves her tea parties with my mom and with her dolls.  But she comes from a long line of coffee-drinkers...they're still called tea parties, but she serves her dolls coffee.  Attagirl.

Whenever Emma hears something unexpected in the other room or outside, she puts her gentle little hands to her jawline and ever-so-delicately whispers, "I hear Daddy."  "I hear a puppy."  "I hear Wowa [Lola]."  "I hear sumpin."  Her whisper is just so precious.  I think she means to put her hands to her ears, but they wind up along her cheeks, and it's so cute.

She has been quite sick lately, but before the storm REALLY hit, I took her to the grocery store.  She LOVES the grocery store and says, "HEY!" to every third person we see.  She speaks very loudly and asks lots of questions.  Sometimes the loud talking is really just plain old yelling.  So here I go down the cheese/eggs/OJ aisle, browsing for what I need, and Emma yells, "I GOT MUUUCUUUS!  I GOT MUCUS!  I GOT MUCUS!"  (If you have a weak stomach, you may want to stop reading.)  As I try to shush her before I am shamed out of the grocery store where everyone's food is clearly being exposed to the child yelling, "I GOT MUCUS!", I realize that I have.  No.  Tissues.   I left the diaper bag in the car, and I didn't have any tissues in my purse.  And this is not mucus.  It's snot.  A light yellow, thick river of snot running into her mouth, it's so copious.  Couldn't be clear, could it?  I couldn't have a quiet, shy child, could I?  What other choice did I have to both get her to STOP YELLING that she had mucus and get rid of that nastiness on her face than to use my grocery list?  That I was still using.  I had to keep reopening the folded (and now somewhat glued together) grocery list.  Don't worry, I sanitized my hands like a dozen times going through the grocery store.  But I still kept thinking (and then got myself kinda tickled), what if every person walking by me only knew what was on my grocery list?  Your sense of humor changes so much as a mom.

Happy in her new princess dress before the storm:

In a pitiful, sleepy stupor during the storm:

These things may not be entertaining to you, but my good friend Abbey has a blog documenting the lives of her three kids, and she often says that she has to blog about these things so she won't forget them.  So this blog entry is definitely for me, so I won't forget these funny little things that Emma does that I most likely will have forgotten about in a few short months.

Dodged it again

No surgery!

Today Dr. Troup told us that Emma's Chiari malformation actually looks better than the last MRI (which is unusual) and that her spinal fluid is flowing around her compressed brain stem very well.  In life, Emma's symptoms are pretty much the same or improving, so it was nice to hear the medicine backing it up.

As for the syrinx in Emma's spine, it's still huge, maybe slightly bigger.  It goes almost the entire length of her back.  In the past, Troup has told us that we would be able to tell it was causing problems if we saw diminished use of her arms and hands.  Today he said we would notice worsening use of her legs.  Let's be honest - she can't use her legs very well to start with, which begs the question....would she be able to walk if we drained the syrinx?  Dr. Troup doesn't know.  But it can't hurt.  But it's still surgery on her spinal cord.  But it might help.  But it might not.  Ugh.  He said that he's not inclined to do the surgery, but if we want him to do it, he will do it.  We said no, and I doubt we will change our minds.  Emma is getting stronger, and she's pulling up on her knees and crawling much better.  I would hate to put her through a surgery and end up no better.  If she DID end up better, it wouldn't be THAT much better...it's not a CURE.  Just a possibility for marginal improvement.  A possibility.  For marginal improvement.  Nah.  We're good.

As I suspected, Troup told us that if we drove a few hours up north (coughResearchTrianglecough), Emma would be decompressed (probably a couple times and probably wouldn't have shown improvement).  It's amazing how many extreme life-altering decisions aren't always made based on black-and-white, scientific fact.  So much of it is judgmental.  And I'm so glad the man making judgments for us is Chris Troup.






PS - If any of you reading this are accountants, you may recognize that this decision has a lot to do with most accountants' risk-averse way of thinking.  So I'm thankful that I'm married to a wonderful, talented, sweet, kind, man who is an accountant and thinks like me.  Can you imagine if we disagreed on something so serious???

Short medical update

So I guess you want to know how Emma's doing, aside from the holiday hoodoo.  I'll try to make it short, because there will be more to follow up with next week.

Emma has had two sleep studies recently.  The first one revealed that Emma's sleep apnea has actually gotten worse.  She's not actually stopping breathing altogther, but her body's ability to regulate her breathing pattern and take deep enough breaths has gotten worse.  The second study allowed us to get a readjustment on her bipap machine settings since she has gotten older.

She has her dreaded annual MRI this Wednesday the 9th.  This one procedure requires 4 appointments: (1) well-check clearance from Dr. Troup because Emma has to be completely sedated and intubated; (2) pre-op since Emma's going under anesthesia; (3) the MRI itself; and (4) MRI follow-up.  The whole ordeal itself is pretty awful - handing Emma over to the doctors crying, holding her down on the table while they shove a gas mask on her for 60 seconds, and then trying to get her to calm down during recovery.  It's heart-wrenching.  The only (and I mean ONLY) comfort I get in leaving her for the procedure is being allowed to leave her beloved Bun (her worn-out stuffed bunny) with her so that she wakes up with him, but Bun can only accomplish so much.

This MRI will tell Dr. Troup if the compression of her brain into her neck has gotten worse, as well as if the very large cyst in her spinal cord has gotten worse/better/same.  Emma's pediatric sleep specialist believes that Emma's sleep apnea is completely caused by the Chiari malformation (or compression of her brain), but the issue is that Dr. Troup is pretty much convinced that decompression of the brain will not resolve the sleep apnea.  In some kids, it's a given that decompression will resolve it - not so with Emma.  But that's for the two of them to discuss.  And Dr. Troup wins, basically.  Who knows - maybe the MRI will tell him something totally different....but I doubt it will because Emma's other symptoms that he's most concerned about have either not changed or improved.

The symptoms of worsening compression are increased problems breathing and increased frequency and severity of choking.  None of these things are happening.  In fact, the choking has continued to get better.  The main symptom of the spinal cord cyst (called a syrinx) is decreased ability to use her fingers, hands, and arms.  Believe me, that's not happening.  She is testing right at normal for her age when it comes to these types of activities.

Emma is on her knees all the time now playing, pulling up on everything.  She crawls on her hands and knees all the time, and she's making great progress with learning to walk with a walker.  She's actually very behind the SB kids who CAN walk, but some kids with SB can't walk at all....so she's in kind of an in-between place in this regard.  However, she loves to walk at therapy and literally NOTHING will inhibit her ability to walk more than an unwillingness to - not a problem here :)

We find out the results of the MRI next Tuesday, so I'll have more info then!

Christmas Part II - what Christmas is really about

Let me just quote my friend Leigh's Facebook status to fully explain the personal benefit we derived from our trip to drop off Cynthia's family's presents on Christmas Eve:

Just had the BEST Christmas gift ever!! My coworker/friend, Mary Beth, and I just dropped off Christmas for a needy family. If everyone could have seen those kids' faces, more people would help others! They haven't even seen the gifts (their Mom made them stay in the other room), but they were jumping up and down with joy!! And they got even more excited that we brought dinner! A true blessing! Many people helped make this special Christmas happen. I was just lucky enough to have the privilege to deliver it all :) I've already received all i need for Christmas in seeing the happiness of those kids and their Mom! Merry Christmas everyone!

The wonderful guidance department at Riverside High provided Christmas for the kids, and Leigh and I made sure that they all had the same number of presents to open - TWELVE each!  We got all the kids stockings, and Cynthia herself had a stocking and presents to open.  She was completely overwhelmed with the numerous gift cards that she received.  You could see the relief on her face.

I talked to Cynthia around 1:00 on Christmas Day, and they were all thrilled with their gifts.  God has truly blessed this family, but we have been blessed, too.  Our whole experience with Cynthia has opened my eyes to how we are called to continually be servants to the needy.  Being a servant is a long-term commitment - maybe it's to one family, maybe it's continual service to lots of different people and organizations.  Jesus didn't forgive our sins and walk away from us.  Where would we be if Jesus wasn't there for us on a continuing basis - no prayers?  No family of faith?  No Scripture?  I'd guess that we would feel as if he hadn't died for us on the cross in the first place.  So why would we do the same to our needy brothers and sisters?  And even worse - we do it in the NAME OF JESUS.  We help in the name of Jesus...and then leave....in the name of Jesus.  That just gives me a guilty feeling all the way down to my very core.  Do you feel it, too?

When we dropped off the presents, we also found out that December 27 was the youngest boy's 9th birthday.  So obviously, Leigh and I made arrangements to get him a cake and some birthday presents.  And again, joy beyond belief.  For him and us.

I have some pictures of the kids, but I don't think it's appropriate to post them on my blog, so here's what I can do: a shot of the back of my car pre-wrapping and one pic of them wrapped and bagged up, ready to go.  Of course, the pictures don't fully do it justice.  Just so you know, the entire back (3rd row folded down) of my car was crammed, wall to wall, with presents.  Nothin' else fittin', ok?

I hope I don't come across self-righteous and preachy, because this Christmas experience with Cynthia humbled me more than you can imagine.  That being said, the next time you celebrate a major holiday with your family, please try to take some time out of your busy schedule and help someone in need.  There are families out there who do not have the ability to celebrate a birthday with even a single mini-cupcake or to put a pack of gum in a stocking, yet we stuff ourselves to the gills with presents, cake, macaroni and cheese, and time spent on our mamas' couches.  And guess what?  Even though I spent lots of time working on Cynthia's family's Christmas and birthday, I still stuffed myself and laid around on my mama's couch.  A few times.  And my own child still managed to receive ten baby dolls for Christmas.  So maybe that old adage is true - the more you give, the more you receive?  I mean, I would have liked to have received some winning numbers on the scratch-off lottery tickets I put in Russell's stocking, but the joy on Emma's face over her ten baby dolls will certainly suffice.

Christmas Part I

So I have a rather large amount of laundry waiting to be folded, but I'm on a major time crunch here...it's almost time for Emma to wake up.  You moms know what I'm talking about.  Those precious few moments at the end of a nap when you're keenly aware of every tiny noise you (or your house, in our case) make that could ruin the bliss of some quiet time to do laundry or blog without being interrupted by a sweet little voice saying dastardly things like, "Oh, no.  It boke [broke]."

Christmas for us this year can mostly be explained in a few words and lots of pictures.  Our house exploded into pink Minnie Mouse, purple Doc McStuffins, and all types of flesh-colored baby doll (some looking quite spray tanned actually) paraphernalia.  Santa was treated to cookies, and his reindeer were treated to reindeer chow (courtesy of Sally and Rose Middleton):

And in the morning, Santa had left Emma an iPad table which converts into a flat activity table with adjustable-height legs.  This way Emma can play on the floor or in her wheelchair.  Two baby dolls and a doll table and chairs also made their way down the chimney.  These are only two of the ten total baby dolls Emma received for Christmas.  Yep, TEN.

Here's Emma right in the middle of her Doc McStuffins dance:

And now for some general Christmas festivities!

Sweet Anndie:

Mason found himself a sweet buddy in our cousin Daniel (sorry the camera work is so bad - trying to inconspicuously catch a VERY active 5-year-old doesn't leave me much time to improvise on the lighting and focusing):

These 3 are the last of 8 boys born in a row in the Young family...and then along came Emma and Anndie.

I didn't get a picture of it, but Anndie and Emma gave Papa (the man with 2 sons, 5 grandsons, and 1 great-grandson) a (functioning) pink Barbie fishing rod, with a reel and everything.  See, Papa has all this land and a pond with fish and there used to be some animals....I feel like every once in a while Russell mentions something about Papa's house that I didn't know about.  I think you can say it used to be a farm maybe??  Anyway, you can definitely still fish at his pond, which is where Russell taught me to fish.  Papa said he taught me wrong....like I know the difference...but I digress.  I told Papa he had to keep the pink fishing pole at his house until Anndie and Emma were old enough to teach.  He chuckled pretty big when he opened it and then tried to pass it off to one of the boys and his girlfriend Christeen.  I guess even great-grandpa's still believe in cooties!

Continuing on to more family....

Ollie, Mason, Anndie, and Emma (it's obviously the best we could do):

Ollie, our budding pianist:

That's about it for our own personal Christmas, but there's still a Christmas Part II coming up...