Neglected

I have been feeling a little guilty lately about how neglected Lola has been.  As if the guilt alone wasn't bad enough, she snuggles up on Russell's head and my lap and gives us these sad faces every now and then.  So I devote one whole blog entry to Lola.  She's not the nicest dog (ask Matt Knight and his leg), but she's nice to us and Emma.

Milestone

Well, we've reached a milestone I had not even thought of, and now that it's here, I'm not happy about it.  The I'm-old-enough-to-know-when-my-picture-is-being-taken-and-I'm-supposed-to-do-something-resembling-this-weird-expression scrunch face.

Lucky for us, she paused just long enough from her toy box expedition to give us that weird attempt at a fake smile.  Based on the next picture, I have a feeling that the next odd milestone will be fascination with tents, forts, and big cardboard boxes.  Emma also enjoys crawling on top of the wooden platform that runs underneath the kitchen island.  Maybe we need to get her a tent.  And then Russell and I will officially have to begin the addition to our house because there will be no more room at the inn.

We had a pretty run-of-the-mill Valentine's Day.  Russell and I are not big believers in day-of celebrations.  If you get close, that's good enough.  Saturday we had a couple massage and a delicious dinner at Ruth's Chris.  (Side note: Please don't think I'm not appreciative of being able to go to a nice dinner, but Ruth's Chris isn't all it's cracked up to be when you've experienced The Peddler in Greenville.  To pay that much for a meal at Ruth's Chris, there shouldn't have been so many mistakes.  Plus, The Peddler is just better.  The best.  Ever.  Anywhere.)  We got sweet Valentine's cards from our parents, and Nan helped the Doodlebug make me and Russell homemade cards with hearts made from tiny inked thumbs and lots of glitter.  Apparently Emma really loved the glitter - like any child, the messier a project, the more fun it is.  If any of you change her diaper in the upcoming months, don't be surprised to find glitter plastered to her hiney...it got sprinkled on the diapers in her diaper bag.  Russell brought home roses, champagne, and a box of chocolates on Monday night (see what I mean?  Monday is close enough.), and I got to cut some gorgeous daffodils from our yard before they froze Monday night.  It appears that our back yard will be beautiful this spring with the bulbs that are starting to come up.  We have a huge hydrangea, azaleas, and a dogwood tree.  I'm sure there are other plants, bushes, and trees that will be pretty, but I can't identify them.  Ironically, the front yard that the whole world sees on a main road in Gower...not so much.  I think pink plastic flamingos might actually class it up.  So here are the flowers that Russell and our yard gave me:

To quote Margaret Love's signature blogline (see my blogroll), it was a very good (Valentine's) day (and preceeding days).

Still a little uneasy...

So Emma's breathing has been better than when I last posted, but last night she was definitely doing some choppy, uneven breathing as we were falling asleep.  I heard it on the monitor and went into her room to check it out for myself.  Maybe it's just coincidence, but the choppy breathing has occurred on nights that she is wearing a specific mask.

Emma REFUSES to sleep on her back, so sleeping with a breathing mask plastered ALL OVER the front of her face is a challenge.  She has three masks to choose from, each with different engineering schemes.  Only two work for belly sleepers, and I use the term "work" quite loosely.  Those two both leave marks on Emma's forehead that we have struggled with pretty much since she started wearing a mask.  We have finally settled on alternating between the two so that her skin will not start to break down.  The masks don't really have much to do with Emma's actual sleep, though - the machine does all the work with regards to rhythm, strength, and frequency of blowing air, and the masks are just what the air comes out of.  So I have a hard time believing that the actual mask is causing Emma to breathe off-kilter, but I'll continue to test that theory this week.  (PS - One reason I don't want to call Emma's sleep specialist just yet is that he'll either a. not do anything about it except keep me out of work for a doctor's appointment or b. schedule another sleep study just a couple months after the last one that will show nothing except that the settings on her machine are correct.)

Sigh.  A normal day with Emma is not a normal day for most moms, but at this point, I'd just settle for a normal Emma day.

Prayers Needed

This might be nothing, but if I've learned anything with Emma, it's this: what I usually think is nothing turns out to be something.

Emma woke up crying this morning, as she sometimes does.  But when I went to get her out of her crib,  her breathing was very catchy, shallow, and irregular.  In fact, it was so bad, I was absolutely certain that she had somehow managed to get a binky lodged in her throat - I just KNEW she was choking on something.  But she wasn't.  She was still sleepy, and when I laid her down to change her diaper, her breathing was VERY shallow.  No deep breaths at all and again, very catchy and choppy.  As she began to wake up, she was fine.

Tonight I heard her breathing irregularly through the baby monitor.  I went into her room to find her breathing pattern and frequency of breaths fighting the pattern and frequency settings on the bipap machine - she and the machine just couldn't get in synch.  She was inhaling choppy, shallow, double breaths, even though the mask is supposed to be helping, and ultimately, preventing this.  I'm so afraid that her apnea has taken a turn for the worse, but there's nothing more we can do about it than put her on a machine.  Having the Chiari decompression might help, but Troup isn't convinced that the pressure on the specific parts of her brain actually has anything to do with her apnea; it's more like just disorganized brain stem.

I'm going to go sit in her room and read a magazine, just to keep an eye on her and listen for changes in her breathing.  After all, that's how I caught the apnea when it started...maybe I'll catch something else that the doctors will know how to fix and...voila!  She'll be all better!  (I realize this is a pipe dream, but sometimes it's nice to think that maybe something about Emma will be healed one day.)  So please pray that our baby girl is not regressing all of a sudden and that God will teach her brain to breathe just like the rest of us.  We are so blessed to have Christian doctors who believe that God uses them and uses medicine to carry out His will - it's so frustrating to think that all those things are in place, and we still don't see any healing going on.  Please just pray.

Keep on truckin'

Well, good news and bad news from Dr. Troup.  He said the exact same thing he said after Emma's last MRI in June:  "The bad news is, her MRI's look awful.  The good news is, they look exactly the same as they did before."  I won't get into boring details, but we sat around and weighed risk vs. benefit of surgery now or later, back and forth, up and down.  The conclusion was that Emma is progressing more and more, and she's not showing increasing symptoms (or even plateau-like symptoms) of the two main problems, a compressed brain stem and a VERY large cyst on her spinal cord...so why perform a dangerous surgery that may or may not help?  We go back to see Dr. Troup in four months just to check in with him, and Emma's next MRI won't be until spring of 2013.

In new house news, we ordered a new dining room table, partially paid for with my birthday money.  You know you've entered the decade of your 30's when you want furniture for your birthday (and that's really, truly ALL you want).  The table came in on Friday, so we spent Friday evening assembling it.  Emma thought this was great fun, once we got all the dangerous parts out of her reach.  She always has been our little engineer, more interested in how toys work and come apart than in actually playing with them.  If we had let her, she would have really loved crawling into the box and trying to figure out how that dadblasted butterfly leaf works.

Rejoining Civilization

We all had it.  Me, Russell, my mom, my dad, Emma.  All of us.  The nasty, debilitating, energy-sucking, ice-pick-on-your-temples-headache-inducing, good-thing-we-have-more-than-one-bathroom stomach flu.  Not THE flu. Oh, no.  This is an evil creation of the devil for which there is no vaccine.  And apparently no one is safe.  It's going around.

My mom and dad, wise in their years (read: 60+), even said it's one of the worst they've EVER had.  Luckily for me and Russell, the absolute worst of it started almost immediately when Emma was asleep last Wednesday night.  I do not believe that God sends these things to torture us, but I do believe His presence is there - proven by the fact that there is absolutely no way that I or Russell could have changed some of these horrendous diapers while we ourselves were sick as dogs.  All said and done, it pretty much takes you out of commission for a full five days.  If Montezuma's revenge is something you contract in Mexico, this must be Sitting Bull's revenge, taken out on American civilization.  Enough with the illness now - the only things left to discuss are the gory details.  Oh, actually, I will say that Emma has been an absolute charm during the whole thing.  Again, what a blessing in the midst of a storm.

Emma's speech is really taking off.  Well, taking off for her, still really delayed for her age.  This morning Russell got her out of her crib.  When I walked in, the first thing she said to me was, "No!"  I leaned in and she pointed to my nose.  Then she pointed to my teeth - "Teeth!"  "Eye!"  Maybe she'll be a doctor...the first thing she wants to do in the morning is discuss anatomy.  I should mention this to Dr. Troup; perhaps he could get her on a fast track to med school!  We see him on Thursday to follow up on Emma's MRI.  I'm not all that scared about this appointment because nothing's actually going to happen on Thursday...and if he had seen something that required immediate attention, we would already know it.  I know that he won't recommend anything until at least April, so I feel like I can relax for a little while.  Or maybe I shouldn't...isn't that when Hurricane Bad-Things-Happen-When-You're-Not-Looking usually hits?

Piddly little MRI

Emma had her MRI on Friday afternoon, and she, of course, dealt with it all like a champ.  We did our best the night before to stuff her like a little pig and keep her up as late as possible because she couldn't eat past midnight until the MRI was over around 3:00 Friday afternoon.  Emma slept late and didn't fuss once about being hungry.  She even went back to sleep for a 45 minute morning nap.  I can't even remember the last time she took a morning nap - this is how I know God is watching over our little girl.  Not just the big things, but the little things like lulling her to sleep so that she doesn't feel the hunger.

Anyway, Emma came through the MRI just fine, even with the breathing tube down her throat.  She fared much better than she did after her last MRI in June - no choking, coughing, gurgling.  Just kinda scared and not wanting to let go of Daddy.  I fed her in the recovery room, and we were home by 5:00.  It took some convincing to get the anesthesiologist to let her go home.  Hospital protocol states that any child with sleep apnea must be admitted for overnight observation if he or she has been put under anesthesia.  Thankfully, Emma's sleep specialist called in when he was paged late on a Friday afternoon to put the anesthesiologist's fears to rest...otherwise, we would have had to come home Saturday morning.

The hospital staff let Emma take Bun back with her.  She loves on Bun when she goes to sleep, and he's very comforting to her.  When we got back to Emma in the recovery room, Bun had apparently received an IV as well.

We will get the results of Emma's MRI on Feb. 2.  Dr. Troup will tell us then when he's considering doing Emma's Chiari decompression.  Unless her symptoms get drastically worse, the earliest she will have the surgery is probably April.

Emma continues to amaze us with her language development.  Her most recent words are key, tools, three (or something similar), Leigh (my coworker), uh-oh, more, and bot (bottle).  When I say recent, I mean in the last 4 days.

God has truly blessed us with answered prayers.  Thank you to all of you who were praying for our baby girl on Friday.  Our church family has simply been amazing in supporting us.  Stephen, our pastor, came to the hospital on Friday and hung out with us during the MRI.  Words just don't express the respect and adoration I have for that man.  He feels like part of our family.  Russell and I joke around with him like family, too - dangerous territory!  Let's hope Stephen sticks around for another 40 years or so - his wisdom, humility, relatability, and, most especially, love for Christ, are exactly what I want my daughter to experience in a pastor as she grows up.  And if we ever move away from Greenville, we fully expect Stephen and his wife Sylvia to move with us!

In closing, let's take a stroll down memory lane at how Emma was doing this time last year:

December 21, 2010

January 1, 2011, #1

January 1, 2011, #2

January 1, 2011, #3

January 1, 2011, #4

January 5, 2011

January 9, 2011

January 10, 2011

January 12, 2011