In other 4th news, our church held its annual 4th of July celebration as a benefit for me, Russell, and Emma to help with Emma's medical expenses. What a fun and humbling night it was. Here's a pic of our pastor, Stephen, holding a sleeping baby Emma. Let me tell you something...two things actually: that man loves our Emma, and she loves to fall asleep in his arms. They have a connection.
Our church has always made us feel loved, no doubt about that...but God continues to overwhelm us with His love poured out through our church family. I don't think that we will ever fully understand the extent of God's love for us in our time here on earth, no matter how many hours you spend in prayer, studying His Word, doing Bible studies, listening to sermons, or engaging in intellectual religious conversations. But that doesn't mean that we don't increasingly understand it to a certain extent while we ARE here. This next point may be up for some debate, but just go with it for now. There are 4 ways through which God speaks to us: His word, prayer, other people, and circumstances. God has made Himself quite known to us in all of these ways since Emma's diagnosis in October, and He continues to do so in all of these ways. I must say, though, that He's a doing a bang-up job of communicating with us through our brothers and sisters in Christ. Just when I think I couldn't be more overwhelmed by the support and prayers of our friends and family, He throws something else at us to prove me wrong...and our church family is the perfect example of that. The 4th of July celebration was an unforgettable celebration of freedom and God's love. Let me assure you, no one felt it more than us. The money that was raised for our family will help us tremendously...Emma's turning out to be quite an expensive baby. Which leads me to my next big announcement...
I got a phone call last Thursday afternoon to inform me that Emma's Chiari decompression surgery has been scheduled for Tuesday, July 20 at 8 am. This was both expected and unexpected. The surgery itself was expected. The day and time already being set was unexpected. A few weeks ago, Dr. Troup ordered a swallow study, and he said we'd follow up afterwards. We were all on the same page that the next step would be Emma's Chiari decompression at some point. The swallow study was two weeks ago, so I called last week to follow up, just like he said. It turns out that Dr. Troup and his nurse are out of town until Tuesday (tomorrow) - good for them! I can't imagine that a brain surgeon gets much of a break. So then last Thursday, I get a phone call from a surgery scheduler saying that before he went out of town, he ordered the surgery scheduled...didn't see THAT coming! So here we are, waiting for a surgery in two weeks, and I have absolutely no clue what this surgery will involve. I can Google the surgery just as well as the next guy, but that still doesn't really tell me about MY daughter's surgery. Every one of these surgeries is different for each person because each person's malformation is unique. In fact, Dr. Troup told us that Emma's is the most unique he's ever seen - unlike anything he's seen at a seminar, in a textbook, etc. So I have no idea how long the surgery will take, how long she'll be in the hospital, how long before we'll see results (if we see them at all), if she can lie on her back...so I kindly and respectfully ask for you to please not ask me any questions about it quite yet. When I say I don't know, I mean I don't know. You and I aren't dating, doing that "yes means no and no means yes" stuff. I really don't know anything. Sorry to be so testy, but this surgery scares me enough without a lot of questions because it's less routine, less common, more dangerous, and more likely to not improve anything with Emma's swallowing function, unfortunately. But it's still something that has to be done for other reasons down the road.
Emma is spending the night with my parents tonight...pray for them, even though most of you will read this blog after they've endured the night with Emma. Pray for their sanity and for good quality napping tomorrow. They were so excited and so precious about it. I of course had to send Emma off with plenty of changes of clothes and a diaper bag full of travel paraphernalia...if you know my mom at all, you know there's no telling what kinds of plans she has for Emma. But it all depends on how Emma feels and on how my mom's back feels. She pulled her back the other day, and lifting a 14-pound baby isn't easy :( Poor Nan. Pray for her back, too.
Lola, our 14-pound Shih-Tzu/Pekingnese mix, moved back in this weekend. We thought she was adjusting relatively well to Emma. She's jealous, obviously, and maybe a little depressed that she's not the center of attention anymore, but she's ok. Lola is getting used to Emma's noises, and we just generally keep an eye on her. We know Lola's "I-don't-know-who-you-are-and-I'll-snap-at-you-over-sudden-movements" look, so we're keeping a watch out for that until she knows and (maybe) loves Emma. Like I said, we THOUGHT Lola was adjusting. See, Lola gets mad when we leave her sometimes, and she pushes her food bowl around the kitchen to scatter a little bit of food on the floor. Then when we get home, she feels guilty and eats it all off the floor. The only time she destroys the kitchen floor with food is when there has been a thunderstorm or fireworks. Oh, and she can't move the water bowl easily because it's a really heavy ceramic bowl...for a reason. So we came home on the 4th after fireworks had probably gone off all over the place, and food was everywhere. Reasonable. And we felt kinda sad for our scared puppy. This afternoon we took Emma on an errand outing, and this is what we came home to:
Scared puppy?? Oh no. Bad puppy. Spiteful puppy. I don't know if you can tell from that bottom picture, but Houdini managed to scoot her water bowl and slosh water 4 feet from the bowl's starting point. And these are only shots of PART of our kitchen. I'll be interested to see how long this goes on.
One of the errands we ran with Emma today was to Bed, Bath, and Beyond. You all know how narrow those aisles are. One day, I think I'll have probably had it up to here (envision vigorous hand gesture) and purposefully ram a shopping cart or Emma's stroller (less violent ramming with her in it, of course) into a display of less fragile/less expensive things...the clearance table perhaps...just to make a point. So there we are, sucking in just to get down the aisles to pick out new sheets. I say new, but they're the exact same sheets we've had since we got married, and we just keep getting new ones because we have an addiction to Beech sateen sheets. Ahhhh. They have this new color of green that's beautiful, so we decided to go with those. I believe our (maybe my??) exact words were, "Sure, they'll match the green in our room, there's a lot of color in our duvet cover to tie it together." Famous last words. Horrible idea. Worst decision we've made in a while. I'm sure any interior designer will tell you that shades of green don't "kind of" match - it's either dead on, or it's a disaster, and you BETTER bring a swatch with you. Poor Russell got home and put those bad boys on the bed, only to realize the mistake we made and call me in. It looked like someone had guacamoleed our bed. And our bedroom colors are red, soft gold, tan, and mossy green. Too bad I forgot to take a picture of it before I meticulously refolded the sheets back into that tiny little bag they come in. It's like folding a map, only worse, because I'm trying to make shiny, slippery, sateen sheets look unused (which they are), yet an amateur folder obviously has stuffed them back into a bag.
Ok, I'll cut it off now and leave you with the latest in Emma's development. Baby steps here (literally), but still steps nonetheless. We think Emma's going to be a lefty. She put her left fist in her mouth before her right and still prefers it, and she started reaching for our faces today (with her left hand) when we were talking to her. Actually tonight, I think she was trying to rip the lips right off my face. Emma, you've got a pair of your own - leave mine alone. So here she is reaching for Daddy's face.
Loved the blog tonight! The Lola story is hilarious, but so true! Yay for another lefty and I will be glad to teach her all the lefty tricks I know! I'm glad all 3 of you enjoyed the 4th with your church family! Send my love to Russell and Emma!
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