Miss Emma has had a good few days. Her new tooth hasn't bothered her too much since it really came through on Thursday. We had a great, semi-relaxing weekend, and Emma got to see a lot of people! She went to a cookout, a picnic, church, and hung out with some friends at our house for the Auburn/Clemson game. Of course, a lot of these events on her social calendar happened during the late afternoon and evening - Emma's prime fussy hours. That being said, she did pretty well. A little cranky, but she gave our friends some great smiles!

Emma visited our Sunday School class and behaved herself. She really wished that our friend Zack would have paid more attention to her, though - she stared and smiled at him constantly, even when he wasn't even looking at her. Then at our church's Sunday night picnic, Emma wasn't really smiling at anyone until she saw our friends' son, Wells...and Emma's face lit up. More proof that she loves men.

Today Emma had 2 big appointments - she went to speech therapy first this morning and ate carrots. She loved them. I may eat my words (ba doom chhh), but I think she's going to like most foods. She enjoyed Zantac in the hospital, which most babies hate apparently. Here's a little shot of her sitting in her Bumbo seat (which Russell affectionately calls The Bimbo) waiting patiently for her applesauce.



Her other big appointment was her 6-month well child visit. She weighs 18 pounds, 4 ounces and is 26 inches long. Her length is average, and her weight is in the 85th percentile because of all that rice cereal with which we have to thicken her formula. The doctor isn't worried, though, because that's very common for babies. However, the mathematician in me thinks, well if that's very "common," then she wouldn't be in such a high percentile...whatever. If her doctor gets concerned, we'll cross that bridge when we get to it.

I don't know what's "out" right now because I don't have seasonal allergies. Ever. In my life. But I think something's getting to me here lately. I know ragweed is kinda high right now, but it's never affected me before...ANYWAY, I was so excited to come home and get on some comfy clothes and just hang out with my Emma. She was excited about it, too. She was happy to snuggle next to me on the couch to play with one of her toys while I started the blog. And this is what we ended up with:



Her busy day really wore her out!

I'm getting a little sad that Emma is getting older - I am now constantly taking clothes out of her dresser and her closet that no longer fit her. I know that this is inevitable. Actually, it's not that she's getting older and bigger that makes me sad...it's that her clothes are so stinkin' cute that I hate that she can't wear them anymore!

Many of you know that we banked Emma's umbilical cord blood (UCB). Her UCB contains stem cells that can serve sooo many purposes. Stem cell research is really controversial right now because the general public basically assumes that stem cell research uses aborted fetuses - that is NOT what stem cell research is about! Stem cells are smart cells that take on the properties of other cells and replicate them. The most common and significant uses of the cells that I've heard of so far are to cure cerebral palsy (you heard me, CURE it - at Duke) and to cure cancer. Yes. Cure CANCER. UCB specifically has great success at replicating nerve cells, which is why we banked Emma's cord blood. This was not cheap, but we just felt that God was leading us to do this. (There's a long spiritual story that accompanies this decision that gives me chills - there are no coincidences, only God. You just can't deny that God is present sometimes. I won't go into it here, unless somebody wants me to.) Anyway, I've recently found out that there may be some treatment (closer than China, which is the only place doing it right now) that is treating SB kids with UCB stem cells. It still hasn't been done yet, but I believe it will be very, very soon. So I ask...beg...plead for your prayers - that this stem cell research will work and that SB children on this side of the world will have a chance at walking! Before we would consider getting into any of that with Emma, we have to get her throat issues (swallowing, eating, choking, aspirating) under control. Perhaps this research will lead to something that will help Emma in that area, too.

It's here!

The day we've been anticipating for a very long time - Emma's first tooth came in yesterday (Wednesday). While Emma was pitching a fit on Tuesday, for obvious reasons, I could see the ridge of one of her bottom middle teeth. I couldn't feel it, but I could see it. Overnight on Wednesday it popped out! So now Emma keeps running her tongue over it - hilarious. All this teething talk makes my gums hurt because I'm vividly remembering what it felt like to get my braces on and how sore my gums were every time the orthodontist tightened them.

Emma is still loving her applesauce, and she starts on carrots on Monday during speech therapy. She has combined physical therapy and occupational therapy on Tuesdays and Thursdays, and that has been going well. She's now going to a smaller facility that is just WONDERFUL. I think the only downfall is that they work Emma to death. They love on her a lot, but if/when she starts crying, they still keep pushing on with the therapy. After they figure out that she's not going to stop crying, they'll stop the therapy, but I'm wondering when they will realize that Emma either cries and doesn't stop or doesn't cry at all. Once she gets started, just throw your plans out the window.

Emma is now a bobblehead by choice. In the last couple of weeks, she has discovered that she can swing her head back and forth, and she enjoys this fun, new motion. For some reason, she was really enjoying doing it after being tickled.



That's it for now - not a lot of quantity, but really good quality - FIRST TOOTH! YAY!

Our little Tiger's growing up

Miss Emma had a big day today - she ate baby food for the first time! Because of her swallowing issues, her speech therapist wanted her to start eating baby food in a therapy setting to make sure everything goes ok. If you've ever seen Emma, you can tell she has NO problem with enjoying her food...physically being able to swallow it is the problem! But today she really enjoyed her applesauce and did well eating it, so she now gets a little applesauce every day. Next week, we try carrots.

Emma was all smiles today and laughed a lot. In our next home, we're going to have to have an atrium with indoor trees. She loved these at the hospital today before and after therapy - I'm pretty sure an atrium or a sunroom could become a great babysitter. Emma kept gazing at the trees with her mouth hanging open and was fascinated by the light coming through all those bright green leaves. Our little treehugger adores being outside, even if the outside is actually in.

Emma tailgated with us again this past weekend and was a real trooper. She had a blast and was such a good little girl. She flirted with all the men, especially our friend Brad. I blogged last Saturday that every time Emma smiled and I pulled out the camera, she stopped smiling. Well that all came to an end this past Saturday because she couldn't stop smiling at Brad, even though he pulled out his phone and snapped a good one of our chubby Tiger. Her first picture smiling - finally (and again, ONLY because she was flirting)



Here's another shot of her tailgating with her cousin Mason cracking her up. I'm not really sure exactly what he was doing or saying to make her giggle, but he really had her going. Mason is almost 3, and he is so good with "Baby Emma." He pats her on her head a lot and kisses her arms and legs. Precious.











Here's a little more tailgating fun!





Aunt Kathey and Emma



Z and Emma



Mason and Uncle Wuss - love this one. Could be Russell's son, I think - all those Young boys look alike, though, so no surprise there.

My parents just recently returned from Paris, so we were keeping their dogs at our house, with my friend Magee's help. Although they are small, it was a real zoo at our house with the 3 dogs, Emma, me, Russell, Magee, and the random assortment of friends and family who helped keep Emma. Normally, my parents' sweet, precious little Maggie isn't all that crazy about our dog Lola - Lola is a little wild and just bowls right over Maggie in order to get to toys, etc. Every once in a while, 3-pound Maggie snaps at Lola, and 14-pound Lola backs down big time. But last Sunday afternoon, everyone got a good nap: Emma cuddled up to her daddy, and Lola and Maggie put aside their differences to snuggle as well.

One for the books

I'm writing this blog at 6 am - wow. I am a morning person...once I'm out of bed for 5 minutes. If I can finally get myself out of bed, then I actually end up trying to do too much and am late for wherever I have to be - just ask Russell, it makes him CRAZY. So I'm going to try to do a quick blog entry before I have to get ready for work!

We have really enjoyed the last few days of pleasant weather - Emma has been walked in her stroller for the last 4 days, which she (and therefore, we) couldn't be more thrilled about. Last night, my dear friend, Magee, and I were playing with Emma on the floor, and she rolled over from her stomach to her back for the 2nd time ever. She's enjoying playing with her toys more now, and she is reaching for them better. She's a little delayed in this area compared to other 5 1/2-month-old babies, but her 11 out of the first 12 weeks of her life spent in the hospital set her back JUST A BIT (insert emphasis and sarcasm here). Still, Emma gets bored and wants to spend most of her day walking around seeing things. It's not so much that she wants to be held, she just wants to GO! I will be very thankful when she has enough trunk control that I can put her on one hip and also be able to carry her in her little backpack carrier or Moby wrap a better way. Here's Emma in her jogging stroller, wondering what in the world that bug net is:



So yesterday she spent day #3 with Daddy while my parents are in Paris. They had a great, albeit busy, day together. Here's something comical, though: my parents' dogs, Maggie (3.5 lbs) and Mollie (7 lbs), are staying with us. Russell took all 3 dogs (Lola included, weighing in at a whopping 14 lbs) AND Emma to my parents' house so that he could go to the dentist while Mama Jan watched all 4 "kids." Russell pulled into the driveway and here comes sweet Mama Jan across the street. She loved on Emma immediately while Russell went into my parents' house. Their security alarm went off, and Russell typed in the code...wrong code. Tried again...wrong code. So then the sirens went off - you know, the REALLY loud ones that alerts the whole zip code that someone is breaking in (or forgot their alarm code). He called me to ask me what the code was, and I couldn't remember on my first 2 tries. I got it on my 3rd guess, but it was too late. The security people called, and you have to give them a password that's different from the alarm code, which, of course, we didn't know. But Russell explained everything to them and that was it. (Actually, now that I think about it, I think I may have an idea of what the password is...Note: ask parents what password is.) Everything seemed to be ok until Russell went to the dentist and Mama Jan was at the house with all 3 dogs and Emma...and the cops showed up. No screeching sirens or anything, but here's a woman who doesn't live in the house with a baby who isn't hers and who also doesn't live in the house, with 3 ankle biters barking and going crazy. Luckily the cops were very nice and understanding. It's almost been 24 hours, and no one's been arrested...yet.

So after all that insanity, Russell's day calmed down and he had a wonderful day with Emma, napping on the couch and doing fun things like that. Hopefully they'll have another wonderful day together today, and then Emma's in for a treat - 2 days with Mama Jane (her biological grandmother, not to be confused with Mama Jan, her "adopted" grandmother)!! God has blessed our family tremendously - with so many people who love our little girl and with His loving hand that has been placed on her; she is doing so much better than a lot of doctors and nurses thought she would.

Emma's first tailgate

Today wasn't exactly Emma's first Clemson game, but it was her first tailgate. Thanks to my fantastic father-in-law, we were able to tailgate from 11:30 to 6:30 with a tv, satellite dish, and high-powered fan. Beautiful. The weather was great under the tent and in front of the fan. So great, in fact, that even after the game itself started, all our tailgating friends and family starting trickling back to the tailgate spot. Who can blame them? Cold drinks, food, the game on TV, a tent, a big shade tree, spacious camping chairs...and sweet baby Emma.


Emma was all smiles all the way to the game until, of course, I pulled out the camera. Then this was all I could get of her. Then I started feeling carsick looking down at her trying to get her to smile and manipulating the camera...and neither one of us was smiling at that point.




One of Emma's brief catnaps - notice the fan blowing back my hair...ahhh, now that's tailgating.




Being silly with Uncle C.




Enjoying the view from 6 feet, 4 inches - much higher than the view from Mommy's shoulder.




Getting some love from Miss Allison - one of those friends to whom we might as well be related.




Emma got A LOT of love from Allison today - not to be confused with Aunt Ally.



Speaking of Aunt Ally, she and Mama Jane took Emma to Tiger Walk in her stroller. Apparently she enjoyed it - Emma LOVES her stroller and loves being outside. We all probably would love to be outside, even in this heat, when someone pushes us around and keeps us a fan on us all day. She even had a portable fan to blow on her in the stroller.

God has blessed us tremendously. So many doctors didn't think Emma would be doing this well at this point in time...but they didn't know Emma. We have no idea what's ahead of us, but God sure does love our family enough to bless us with a fun and beautiful day with this precious little girl:

Nice and steady

It's been 2 weeks since I last blogged, and I've definitely heard from a lot of you that I need to get on the ball! Thank you, thank you, thank you for caring so much about our family. What blessings you all are.

Let's see...where to begin...I believe I last blogged that we were going to Bristol. It was very, very fun. We were only 2 of about 200 people who got to sit in the grandstands in the middle of the track. Only about 200 of 160,000 people got to sit in the infield, so we were very fortunate. We ate some great food, enjoyed the pit tours, relaxed under the Verizon Wireless VIP tent, and got complimentary scanners to listen to the drivers. Don't get me wrong - I really enjoyed myself, but I'm not exactly going to jump at the chance to go to another race sitting in the stands. I hear the other great place to enjoy a race is from a box - maybe that will be my next trip :) Here's a great memory from Bristol:



Gotta love NASCAR.

While we were at the race, Emma stayed with my in-laws in Honea Path. She went to their church and finally met in person so many of the people who have been loving her and praying for her from afar. Emma tells me it was a great weekend.

Last week was crazy busy (as is this week) for many reasons. Life with a 5-month-old is just nuts anyway, but Emma has a few more needs than your average 5-month-old. For example, she has an average of 4 appointments per week. During the day, she sometimes she stays at my parents' house and sometimes at ours, so I feel like I'm constantly packing her to go somewhere. Any of you with kids know that you have to do your best to prepare for anything and everything! Russell and I stayed at my parents' house for most of last week because I was working much closer to their house than my house. So we all moved out of the house for a while! In the midst of the temporary relocation, Emma had a good visit with Dr. Troup and some good, impressive therapy sessions as well. Dr. Troup feels good about Emma - I can't really say that he feels good about her progress because not a lot has changed...but at least she's not backsliding. His main fear, as I have posted before, is that he'll mess around with Emma by decompressing her Chiari malformation and unnecessarily cause her to take some backwards steps because she's still so young. So we're moving forward with a CT scan at the end of September and a follow-up visit with him at the beginning of October. We're just taking it nice and slow, steady as she goes...

If you'll remember, there was a lot of discussion about having MRI's of Emma's brain and spine. She'd have to be intubated for these, but she doesn't have to be for the CT. (Side note: Dr. Troup said she'd only have to be still for a couple minutes for the CT scan. Good luck with that.) The procedures can look at the same thing, but the MRI shows a lot more detail, and the images can be manipulated a lot more. So I guess Dr. Troup wants to compare this CT to a very old one and just see how things look now. One thing he DID comment on with confidence is that Emma's legs are really fat. He called them hams, actually.

I think Emma picked up a cold at Dr. Troup's office. She started getting really snotty mid-week last week. To be sick, she has been in a GREAT mood. Her eyes were watering, she choked more, and she didn't sleep well AT ALL for 3 nights. But overall, she's been a very happy baby. I really wish we could have gotten a picture of this, but the lighting was bad: Russell got her out of bed on Friday morning, and she smiled up at him with a huge toothless smile, so happy for her daddy to be getting her up...and her face was covered in dried boogers. Maybe it's only cute when it's your own child, but I can just imagine her innocently and happily grinning at her dad, totally oblivious to the crusty gross stuff on her face.

Even though she was sick, Emma had a good week. We were ready for a nice, relaxing weekend...and then the AC broke on Friday. We realized it was broken at closing time on Friday, so we were kind of stuck. We were all sweating it out, but only Emma got to hang out in her underwear and nothing else for 16 hours straight. You wouldn't believe how much we got accomplished on Saturday morning before 10:15, just trying to escape the sauna that was our house. We took Emma to Honea Path to hang out until we got the air fixed at 7:00 Saturday night. So far, it's still working...

This week has been ok - another reason life has been crazy is because of my job. Summertime is always the busiest time for us. Being out with Emma made things a little more difficult, and my coworker and friend, Leigh, has been taking care of her mom. Leigh's mom has been suffering from Alzheimer's for 12 years now (I think it's 12 - sorry, Leigh, if I got that wrong), and things have gotten really, really bad for her lately. So Leigh and I have been barely holding it together personally and professionally...I'm just ready to take a big, deep breath and feel like I've gotten something accomplished - at work, at home, somewhere. Leigh's mom passed away yesterday, August 31, at the age of 63. Please remember her family in your prayers. We all have the tendency to believe that after an extended illness, the recovery period for the family of that person is quicker...but I'm not so sure about that. I believe that God is the only one who can provide us with true peace, and I pray that He grants His peace to Leigh quickly and powerfully.

This weekend begins football season - Go Tigers! My parents are in Paris for the next 11 days, so Russell, my mother-in-law, and I are taking turns taking care of Emma. Of course, these 2 Saturdays that my parents are gone fall on two Clemson home games. My in-laws took the plunge and purchased a generator for our big ole tailgate party, so now we can power more than just a tv and a satellite dish. It is ONLY because of the generator that I'm considering taking Emma to tailgate on Saturday - the generator will power a giant fan that I'll be blowing on our hot-natured baby. I love all of you that we tailgate with, but I've got news for ya: the fan will be blowing on Emma. If you want to enjoy the fan as well, you are welcome to hold her while sitting in front of the fan. If she just gets too terribly hot, our wonderful Aunt Kathey has offered us the key to her house that is just minutes away from Death Valley. I'm totally ok with not going into the game, just as long as Emma is happy and comfortable underneath the tent and the trees.

Ok, I'm practically going cross-eyed now that I've tried to catch you up on our crazy, crazy life. Time for bed - I'll try my best to blog sooner next time.

They say laughter is the best medicine

I don't know about medicine, but laughter is certainly the best reason not to blog for a while. Emma has started smiling a lot more and laughing a lot more, and I absolutely can't get enough. Life has been pretty busy carting Emma back and forth between our house and my parents' house, but she's been a very happy girl. Here's a great shot of her grinning at her daddy (by the way, she is a huge daddy's girl.)



One of Emma's most recent tricks is flashing - all of a sudden, she LOVES to suck on fabric. She's not teething, but she just really likes to put her burp cloth or her dress in her mouth. So at any given moment during the day, she's flashing the room by pulling her dress up into her mouth. She is getting so much better at holding her head up. She's still a little bit of a bobblehead, but it's amazing how much she has improved. She likes to sit in her Bumbo seat, but we have to help her out a little. When she gets tired of sitting up, either in our arms or in the Bumbo seat, she relaxes by leaning as far back as she possibly can, resulting in this:



Emma has also started experimenting with her noises, and she has practically chapped her bottom lip in the last week by sucking it in and out and mumbling at the same time.



Emma visited the ophthalmologist today, and the doctor thinks her eyes actually look a little better. He still said that she will need glasses eventually, but we're going back in 3 months for another look. Ba doomp chhh, no pun intended.

Emma and my sister had a fantastic time together this past weekend. I was so happy to see Anissa be able to actually hold and kiss on Emma...it just warmed my heart. What a blessing this weekend was.

Russell and I are going to the Bristol night race this weekend. Yep, NASCAR. I hate NASCAR. Nothing personal against any other fans, drivers, or those who work for NASCAR (Chuck, you know you're one of my favorite people.) But seriously. It's a dumb "sport." But I'm all for giving something a try, so I figured this was the time to do it. We're going to one of, if not the best, races in NASCAR, along with free and close accomodations (reference Chuck again - his parents live in Bristol), free tickets, free food and drinks, VIP tent access, pit passes, pit tours, and other things I don't understand and possibly might not care about. But don't worry - this negative attitude isn't true negativity; I'm going with an open mind, patience, and an expectation of fun. Oh, and ear plugs. Emma is spending her first night out of town that night - not with us in Bristol, but in Honea Path, Russell's home town. She's going to Russell's parents' church, too. I fully expect her to come home spoiled rotten and exhausted.

Please pray for Scilla and another dear friend of mine who is very sick.

EMTV

My sister got to spend the whole day with Emma today! Anissa came into town late last night. She has seen Emma before and spent many days with her, but all of those times were in the hospital when Emma was hooked up to monitors and looking and sounding all pitiful. But now - what a difference! Don't get me wrong, she still has her issues, but how wonderful for Anissa to be able to hold her and snuggle her however she wants and however much she wants. And Emma has a video monitor that we can't live without, which Anissa has coined Emtv.

Emma has been pretty good since I last blogged, and I have lots to report. It's just a matter of finding time to blog! I have gone back to 5-day work weeks, and it's glorious. I've been working around the corner from my parents' house for most of this week, so Emma and I have been staying with them. Needless to say, my parents are really enjoying having Emma in their house and sleeping in her crib in their bedroom...well, enjoying it until she wakes up at 5:30. But then she just gets in the bed with Nan, and all is right with the world again.

Emma has made some trips to come see me at work this week, and she has loved getting out and going, of course. We have quickly discovered more and more that quieting Emma (in most cases) simply requires going outside. It's rather unfortunate that it's 100+ degrees outside, but sometimes you just have to pick the lesser of two evils. Anyway, one day Emma came to visit and fell asleep in my arms. My 16-pounder was getting a little heavy, so I leaned against the counter. That turned into letting her rest on the counter and one of my arms...which developed into her lying on the counter all by herself. We of course were hovering over her, but here is a picture of our sleepy, dead-to-the-world baby.



The last time I blogged I mentioned that my coworker had Emma laughing - Russell has now taken over as the best at everything: making Emma laugh, making Emma smile, helping her calm down, and just plain entertaining her. He REALLY had her laughing the other night - definitely the cutest thing I've ever seen to see my beloved husband getting so much enjoyment out of making our daughter make the cutest noises with the biggest gummy smile. My mom calls her her little gummy bear because Emma smiles these huge smiles and all you see is gums. We're waiting for teeth to come through, but right now it's precious to see all her gums.

Emma had her first visit at the Shriner's Hospital on Tuesday afternoon, and she had her entire entourage with her - me, my mom, Russell, and his mom. Emma had x-rays of her spine, feet, and ankles, and she had some urinary tests as well. Her spine was a little crooked, but it could have been the way she was laying. Her feet and ankles look ok, too, just a few bones that are a little crooked in one of her feet. We still don't think that Emma has much feeling in her feet, but her overall leg motion is good. The orthopedist said that the flexion in her right foot is a little pointed, so we have to stretch her foot into a flexed position more. She also has very loose hip sockets, so there's a pretty good chance that her hips will come out of the socket later. The best case scenario is that they both stay in, of course. Second best is that they both come out, and worst is if one comes out and one stays in - then one leg would appear slightly longer than the other. They don't really surgically correct this because over time, her hips would either get really stiff and straight or really stiff and bent. This was a hard pill to swallow because I don't like to look that far into the future. I'm not in denial about Emma's mobility issues, but we have enough to deal with right at the moment with Emma's swallowing and breathing problems. It's just so hard to hear about all the other difficulties in the distant future. Right now, I'm asking God for her to be able to eat, breathe, swallow, crawl, roll over...all the other things that 5-month-old babies do. We also found out good news and a little bit of bad news about Emma's bladder - it doesn't reflux urine back into her kidneys, but it's a little on the small side. She also has a bladder infection that Jean, the spina bifida nurse, believes is from Emma's frequent dirty diapers. Luckily, Emma hasn't been showing any symptoms, and she got some antibiotics today. We are still fighting some horrific diaper rash...poor Emma just poops all the time. And every time she chokes, she poops - this alone happens about 10 times a day. Sweet Emma has just got all kinds of problems going on. So in the meantime, I just try to think about how cute she is laughing now and how much she enjoys her sugary medicine.

Other small developments with Miss Emma are that she has figured out she can twirl her hair, just like her mommy. I have always twirled my hair...ALWAYS. And I still do it to this day. Emma has also found her ears, and no matter how much we cut her fingernails, she still manages to cut the insides of her ears and make them bleed. Her head control is improving significantly, almost on a daily basis. We are going to have a great weekend with Anissa and then prepare for a great swallow study on Monday. Please pray that Emma's swallowing function is improving. Time for me to go to bed and rinse out my hair - I smell Emma's spit from when she decided to knaw on a fistful of my hair, unbeknownst to me until it was too late.

How quickly things change

Emma is supposed to have 4 MRI's next Friday of her brain and first 3 sections of her spine. In order to do that, we were told that she would have to be sedated. Because of Emma's past (well, and present) trouble with breathing, the Pediatric ICU doctor in charge of sedations that day wanted to see Emma first to make sure he was ok with sedating her. Sedating anyone, children or adults, has the risk of slowing breathing and causing you to stop breathing. So today my mom and Russell visited the PICU...home sweet home for half of May and half of June. They waited for an extraordinary amount of time for the PICU doctor to come check out Miss Emma. It turns out that Dr. Troup was passing through seeing some patients, so he got involved in all this since the MRI's are for him anyway. Good thing he was there!!

Apparently, GHS Children's Hospital only does MRI's on kids who are sedated AND intubated (breathing tube). Here's where Dr. Troup is involved: he hates that last part. He doesn't believe that all kids have to be intubated (this can be very dangerous). In Emma's case, he feels almost certain that intubating her will set her back some because sticking a tube down someone's windpipe which is fragile and struggling to work the right way anyway isn't something you want to do a whole lot. He's afraid that they're going to intubate Emma for the MRI's, set her breathing and swallowing progress back a little, only to find out good things from the MRI's. He's really pleased with Emma's arm movement, which would be affected by the syrinx (spinal fluid-filled cyst in her spinal cord), and her swallowing isn't getting worse as far as we can tell (which would indicate a problem with her Chiari malformation/brain compression). So what he's decided to do instead is to have a swallowing study in the next few weeks to see if she's improved, gotten worse, etc. since the last one. If the results are just terrible, he'll go ahead and get an MRI scheduled, but I honestly think that her swallowing will have either improved or stayed the same. Eventually Emma will HAVE to have these MRI's because her problems have to be fixed at some point, but Dr. Troup doesn't want to intubate her now just because we're curious to see how things look along her spine and on her brain stem. It was very civil, but Dr. Troup and Dr. Gwyn (PICU Dr.) disagreed about whether Emma had to be intubated. Dr. Gwyn seemed to think that Emma was too wiggly and active for light sedation alone to work, and heavy sedation requires intubation. Apparently the hospital Dr. Troup came from in Georgia didn't have this policy, so he's still having a hard time adjusting to it all these years later. All this to say...no MRI's for Emma next week. A swallowing study and another office visit with Dr. Troup will be in the works, but that's it for now. So back to what I've said before: Live each day for THAT DAY...don't worry about tomorrow. Tomorrow has enough troubles of its own (and enough surprises of its own!!) That's my rough translation/application of Matthew 6:34. I'm so happy to think about a great day tomorrow with Emma...and I try not to think about anything past that. I can't start to think about the process of teaching Emma to try to walk or what will happen if her swallowing doesn't improve or gets worse. That will ruin every dear moment that we have with her now; God loves us so much and has blessed with so much in the present. Why do we throw away our current blessings by worrying about what the future holds?

Maybe some of you saw Dr. Troup on tv this week - he was on WYFF talking about kids' bookbags being too big and harming their spines. He had no idea he was going to be on tv - he knew his nurse scheduled an interview, but he thought it would be for a magazine. Turns out it was the news...and he was on at 6 am, 5 pm, 6 pm, and 11 pm. Good thing he was wearing a decent shirt and not one of the crazy ones he wears when he goes to the Shriner's Hospital.

Speaking of Shriner's, we have our first clinic visit there on Tuesday. It's an afternoon with 4 appointments I think. I'm not sure if we'll get a lot of information since (1) this will be Emma's first visit and (2) you can only tell so much about a 4-month-old.

Emma has had a pretty good week this far. She has smiled a little more, and she had her first big belly laughs today. My mom and Mama Jan brought Emma to the school where I was working, and my coworker, Leigh, was holding and talking to Emma. Then all of a sudden, Emma kinda chuckled at her. So Leigh imitated her laughing, and then Emma REALLY got started laughing. It might have been the cutest thing I've ever seen. I may drive myself crazy doing it, but I'm going to try really hard tomorrow to get Emma to do it again. Emma is way behind on her smiling, talking, and laughing because she basically was either on her tummy or in the hospital on a ventilator for a total of 8 weeks. That's a long time in the adult world, and it's practically an eternity in the infant world. So we're hoping she'll catch up to other 4-month-olds soon.

Hooray for my last long summer day. My regular working hours begin next week. I won't have Fridays off anymore, but who cares? My Fridays were so insanely hectic doing all the things I didn't have time for the rest of the week and running Emma all over the place that it just wasn't worth it. I used to love my summer hours with Fridays off, but it's very different when a baby is thrown into the equation.

Time to hit the hay - early morning! I'm going to try to get myself and Emma bathed, dressed, and fed by 8:30. Emma has occupational therapy at 9; she may not get a bath, but believe me - I will. That reminds me - question for all you moms: do you have to wash your babies' hair every day? I swear to you, Emma has to have a full bath, shampoo and all, every day. Her hair gets greasy like a teenager's!! All I hear and read is that you only have to wash infants' hair every other day or even less. Ok, if we only washed Emma's hair every other day or 3 days a week, she'd be looking trashy. I'm pretty sure those bows don't look as cute when they're clipped into greasy hair.

What a sweet daddy

Yes, Russell, is a great daddy. But I'm talking about MY Daddy. Emma and I spent the night at my parents' house Wednesday night because I was working a lot closer to my parents' house than mine, and my mom was keeping Emma on Thursday anyway. I arose Thursday morning to a quiet house: my dad was at work, my mom was in their bedroom still asleep with Emma in her crib, which is also in their bedroom. Yes, Emma has her own crib at my parents' house. In the kitchen, my dad had left me the following note: "MB, I did not know if you wanted lunch fixed - I put fruit in a bowl (blue lid) for you and chicken salad sandwich on top of bowl. Also for breakfast - egg sandwich with little bit of cheese and bowl of fresh cut peaches and cottage cheese in bowl in fridge. You can take it with you or eat for breakfast. Dad." Then I turned to see the coffee already brewed, with a to-go cup, a spoon, Splenda, and sugar. What a sweet, sweet daddy I have. Here he is loving on my baby:



So then I ate my delicious breakfast and turned on my parents' video monitor that was in the den to see what Emma was doing...no Emma in her crib. I knew EXACTLY where she was: in the bed with my mom. Apparently Emma awoke at 6 am, and my mom put her in their giant king-sized bed with her. I snuck in there and found her laid out in the middle of their giant bed, snoozing away. So precious. And spoiled.

Emma has had a pretty good week this week. She has gotten upset and angry a little, but today was the first time she's gotten so angry (that we haven't been able to prevent) that she almost stopped breathing. But overall - a good week for Emma. She has run errands and gone shopping and been loved on by all kinds of people. She's really been interested in her hands this week - she can hardly keep them out of her mouth. She's been drooling like crazy, too, so all signs point to teething...except for the fact that there are no teeth, or even traces of teeth! She has gotten so much better with holding her head up, especially considering her head is in the 99th percentile of head circumference. Because she's figured out that life is more interesting sitting up, she now gets furious when we cradle her. Instead she wants to sit up on our shoulders or on my hip. The tricky part is that her ab and head control isn't perfect, so sometimes she nosedives and we have to be quick to catch her. Her most recent trick is waving her arm up and down, up and down, up and down. It started on Friday when she figured out that she could mess with the canopy on her swing. Then she started doing this ALL THE TIME, much to her daddy's delight (notice that Emma visibly realizes she's using her own hand at the end, tries to put in her mouth, but thinks that rubbing her sleepy eyes is better):



The other silly thing she did today was insist to be held with her head hanging virtually upside down. We have no idea why this was so comfortable; no matter how much Russell tried to move her, she just moved her head back into this position:



Lastly, Emma has done much better with her naps. She is the queen of fighting sleep, which makes for a grumpy baby at night. But here lately, she's been doing great with napping. She and I snuggled for a 2-hour nap on Friday; Emma has NEVER snuggled with me like this for that long, and it was the most wonderful feeling in the world. Side note: Lola looks so desperate for attention, it's pitiful. I promise we love her, despite the look on her face, which seems to say otherwise.

What a summer it's been

I know, I know, I haven’t blogged lately. This summer is killing me. Killing me. I work long 10-hour days Monday through Thursday, and I come home to a fussy baby who goes to sleep shortly after I get home. I definitely do not get the best of Emma each day. My Fridays off are crammed with appointments, phone calls, and paperwork to get Emma's special little life off on the right foot. Long workdays don’t leave me much time with Emma, and they certainly don’t leave me with much time for anything else…like blogging! But I'm finally able to make time for all of you who love our sweet baby so much. Thank you for caring about her so much.

Last week wasn’t a great week for Emma. She had a lot of trouble breathing…her stridor was louder, she was congested, she choked more, and she stopped breathing every single day but Monday. We think she had some sinus drainage. Doctors have told us she’s too young to have sinuses…I don’t know what they mean EXACTLY by that statement, but she has all the nasal canals, so I think they can get congested. We think a lot of the choking was from this drainage. Her temper really got away from her last week and caused her stop breathing when she started that angry crying.

Emma didn’t have any doctor’s appointments last week. Russell’s parents, brother, sister-in-law, nephew, aunt, uncle, and cousins all went to the beach this week. This is the first time Russell and I haven’t gone with them since before we were married, but we were just apprehensive about taking Emma away from her doctors. So my mom had Emma by herself all week last week, and she loved it. I think my mom slept all weekend in recovery, but she still loved that time with Emma.

Lola is getting better and better with having Emma around, but she’s still pretty attention-hungry. Her Aunt Magee came to visit...Russell and I have always suspected that Lola loves Magee more than us. Lola gave us a bad name and made it look like we haven’t loved her at all:



Lola was very, very sick this weekend. I won’t go into the gory details, but Russell and I only slept for 5 hours Friday night…and it wasn’t because of the 4-month-old baby. Emma had a great weekend, though. She napped a lot, slept for 10 to 11 hours each night, and snuggled with her dad. One thing I'm going to nip in the bud, though, is watching NASCAR with Daddy. My daughter will NOT be a NASCAR fan. You mark my words.

One fun development is that a photographer came through the hospital and took some pictures back in May. She mailed me the discs with a few of the pictures on it. Here are a few of my favorites:






Sleeping in our pastor Stephen's arms...bonding as usual


Snuggling with Nan and Granddad


Being adored by Mama Jane and Granddaddy

Yesterday my mom and Mary Jane took Emma for her 4-month well-child visit. She got some shots and took them like a champ. And she’s also returned to the days of being short and fat. She weighs 15 lbs, 12 oz (85th percentile) and is 24.25 in. long (40th percentile). I know the numbers don’t lie, but does 15 lbs, 12 oz sound like the 85th percentile to you?? I just don’t think it’s THAT heavy for a 4-month-old child. Anyway, it was time for her to eat right as the appointment was over, so they ended up feeding her in the waiting room. Our cute little girl in her beautiful dress with a petite bow in her hair belched like a man and got a laugh out of the other families in the waiting room, as well as from the front office staff. Nice, Emma.

Emma has felt absolutely horrible tonight. I'd like to say that it's the shots and she'll be better tomorrow...but we're pretty sure it's gas. Poor baby. The pain and crying is making it harder for her to breathe, too, I think. And she's so tired...she just wants to go to sleep. She's been throwing up the past two days when she chokes after her bottles, too. So far it's another bad week for poor Emma.

Lastly, Emma has had a problem with the sun getting in her eyes, which is really unfortunate since she likes to be in the car and in her stroller so much. The shades on the car windows can only block so much. Enter Baby Banz sunglasses.


Side note: when Emma sits in her car seat, it pushes her head forward a little, so all her face and neck fat pushes forward; thus, the HUGE double chin, chipmunk cheeks, and pooched-out, pouty lips.

Our blessings abound

Russell and I have been so blessed in so many ways over the course of our lives. In fact, we have had the conversation a few times about how surreal our lives have seemed. Long before Emma came along, it seemed like we were waiting for something catastrophic to happen because neither of us has ever really had to deal with the horrible, awful things that so many other people our age have experienced. We've both lost grandparents and have gone through some rough patches here and there but nothing REALLY awful. We know that God doesn't operate like that - He doesn't ration out heartbreak and difficulty; people don't have a lifetime agony quota. But still...how could we have really been THIS blessed?! We knew (and still know) that God loves us and blesses us. But that never explained why people who were seemingly so much more devoted to Him than us, so much more Godly than us, were haunted with tragedy after tragedy. So we were ultimately always asking what you're not supposed to ask: "Why do bad things happen to good people?"

And then on October 9, 2009, we found out that our little girl would be born with a birth defect. We had finally gotten our first official tragedy. Russell and I both recognized that this was the scary thing, the heartbreaking event, the dreaded moment we'll never forget. And there will be more of them...but this was the first time our lives seemed...real? I don't know if real is the word. We have struggled and continue to struggle daily with our frustration towards God - not because of the toll this whole experience has taken on us, but because of what is happening to our little girl. All of you parents out there know what I'm talking about - your own needs, wants, and feelings take a very distant back seat to those of your children.

So since our lives suddenly became "real," God, of course, hasn't stopped blessing us - we just see His blessings in new and unexpected ways now. First of all, our church, Earle Street Baptist Church, donated the proceeds of its annual 4th of July celebration to our family to help with medical expenses. Second, a church in Pickens called Holly Springs Baptist Church donated the proceeds of their Wednesday night hamburger plate supper to us. Third, and most importantly (not to downplay the generosity of these two churches), we are overwhelmed by the acts of love poured on us by our brothers and sisters in Christ, some whom we have met and others we have not. Emails, text messages, phone calls, Facebook messages, blog and guestbook comments, cards, meals, visits at home and in the hospital, gifts galore for our sweet baby...the list goes on and on. So for any of you who have experienced, currently are experiencing, or will experience some sort of life-changing tragedy, know that Hebrews 10:23 is TRUE: "Hold unswervingly to the hope you profess, for He who promised is faithful." God is faithful; just keep the hope and faith in Him, for He will STILL bless you in your storm.

This is a picture of Russell holding Emma at Earle Street's 4th of July celebration:




Here's a picture of the marquis from Holly Springs Baptist Church - thanks again for all your prayers and love for our family, and a special thanks to Sandee Blankenship and her youth group girls for all their hard work.



As I've mentioned before, Lola has moved back in with us, and things are getting a little better each day I think. Lola is still depressed because her life right now is the human equivalent of going to Disneyworld (my parents' house) for 3 months, then having to come home, only to find that a stranger is in your house who makes weird noises, smells funny "down there" sometimes, and everyone now loves this new, weird person more than you. I started this blog earlier today when Emma was sleeping, and Lola tried to take advantage of some alone time with me...she was so desperate to get to me yet nap at the same time that she ended up like this as I was typing on the floor:



So Dr. Troup expressed some concern about Emma's eyesight on Monday. We visited the pediatric opthomalogist on Friday, and Emma's problems are completely unrelated to spina bifida. Hallelujah! But it's still a problem - Emma is farsighted. The people we have told about this problem ask us how in the world the doctor could tell exactly how farsighted she is, and I have absolutely no idea. I've never had an eye exam before, so I don't even know how they do it with adults, much less babies. But basically she sees well far away and not so great up close, which is why one eye (and not always the same one) is starting to look in every once in a while. When things get close, she has to work harder to focus on it. We go back in 6 weeks, and we'll have to just see how she does until then. We'll take note if her eye-crossing gets better or worse, and the doctor will evaluate her eyes again. But eventually, 3 months, 6 months down the road...drumroll, please...she'll have to have glasses. GLASSES ON A 7-MONTH-OLD BABY! Who ever heard of such?! I don't think it's because her eyesight is THAT bad, but when her vision pathways are being set, it's important to take proactive steps to make sure it doesn't get significantly worse. Apparently it could actually damage her eyes. The doctor said she was a 5. A 5 what? I THINK that eyesight is measured on a scale of -14 to +14, one end being nearsighted, the other being farsighted. So 5 on a scale of 1 to 14 doesn't seem awful. Glasses on a baby has the potential to look very cute or very weird. I searched for some pictures of babies wearing glasses, and most of the frames that these kids are wearing...well let's just say that my daughter won't be caught dead in some of them. Just to get an idea of what a baby with glasses looks like, here's a 5-month-old in glasses. PLEASE NOTE: THIS IS NOT EMMA. And Emma has more hair, which I think would make the glasses look slightly more natural.



Emma is still eating like a champ and looks like it. I leave you with a big fat baby thigh:

Well that was unexpected

Today was Emma's pre-surgery appointment with Dr. Troup. Dr. Troup started by asking us how Emma's been doing in general. We gave him our report of Emma's life for the past 3 weeks since we saw him. After we were done with that, he said, "It sounds like she's doing ok. That being said, let's talk about whether or not we want to do this surgery next week." And then I remembered what kind of person we're dealing with - he errs on the side of caution and schedules OR's just in case he needs them. I knew he wanted to talk to us about the surgery before it actually happened, but it had not occurred to me that the surgery could be optional right now. Dr. Troup is going out of town for 10 days after Emma's surgery, and he wanted to know if we felt comfortable with him doing the surgery and then leaving. Without even consulting Russell, I said, "NO. I am NOT comfortable with that." Luckily, Russell feels the same way. Well, either he feels the same way or just decided that now is not the time to disagree with me. Anyway, Dr. Troup feels that because Emma is doing about the same overall (improving in some areas, getting worse in others), there's no immediate rush to do this surgery. That's a very positive thing! He feels that there's a chance she could kinda outgrow this muscular problem in her throat. So if you feel led to pray for her specifically, that would be the prayer I think - that her throat muscles would strengthen and that the neurological connections in her brain stem controlling them would work properly.

We will have another couple of MRI's of Emma's head and spine, as well as another swallowing study, in 4 to 6 weeks. Dr. Troup will then look at all those results and compare them to the ones Emma had 4 weeks ago. Let's start with her head: if the Chiari malformation still looks pretty bad, and Emma's symptoms either get worse or don't improve at all, he will go in and remove some bone. Now moving on to the syrinx (cyst filled with spinal fluid) in her spinal cord: If the syrinx looks the same in a month as it did a month ago, he may just do the Chiari decompression. Allowing her brain stem more room will also allow the spinal fluid to flow up and down her spine more freely. This means that the syrinx could drain on its own. OR if the syrinx looks much, much worse in a month than it did a month ago, Dr. Troup will insert a needle into her spinal cord during the same surgery to drain the fluid. When you're dealing with infants, it's best to wait as long as possible to allow them to mature as much as possible. On top of that, if an infant has respiratory problems, you want to intubate them and put them under anesthesia as little as possible...so if Emma needs both surgeries, Dr. Troup would prefer to do them at the same time.

Another unexpected development is that Emma has started to go a little cross-eyed. Not awful, but every once in a while, she looks a little cross-eyed and then she stops. We asked Dr. Troup about it and he said that (1) if a child JUST has spina bifida, she could have vision problems; (2) if a child JUST has hydrocephaly, she could have vision problems; and (3) if a child JUST has a Chiari malformation, she could have vision problems. Emma has all 3, so Dr. Troup was not surprised AT ALL that Emma's eyes were starting to cross a little. He recommended us to a pediatric opthamologist, and we see him on Friday. It didn't sound like we needed to panic about Emma's eyesight because catching it early is key, I think. With infants, if they start to go cross-eyed, they start seeing double. As the brain is developing and vision pathways are being set, the brain will basically just shut down one eye so that the other eye is the good, functioning eye. Clearly, you don't want that to happen. Of course, we may get to the opthamologist Friday, and they may say that there's nothing to be concerned about. We'll see.

All of this progress today has really served to confirm all of the decisions we've made and has made me feel a little bit better about God's plan. I've been trusting Him all along, even when my heart was questioning Him, and today just seemed to be a positive, forward-looking day in the midst of weeks of just enjoying the present because we don't know what will happen tomorrow. We still don't know what will happen tomorrow, next week, next month, but it's really nice to get some reassurance about Emma's current medical state.

Finally, a little self-expression

Hey, friends! This is Emma. Mommy FINALLY let me blog for myself. She's spent all these months blogging about me but has never let me blog on my own.

I've had a great weekend. Mommy stayed with me all day Friday because she doesn't have to work on Fridays in the summer. I had a few visitors, and then I ran some errands with Mommy and her best friend and my unofficial aunt, Holly. We went to Target, and I loved riding around in the cart. Mommy was surprised at how quiet I was. I usually breathe VERY loudly, and people stare at me...Mommy and Daddy think they stare because I like to breathe so loudly, but I think it's because I'm so beautiful.

On Saturday I let Mommy and Daddy sleep until 7:45, and I had a great morning. I talked to Daddy and hit him in the face a lot.



I had a bath, which I really enjoy.



Then Mommy washed my hair the way Dawn, my NICU nurse, taught her. I LOVE to have my hair washed.



And finally I took a nice little nap in my swing in my bathrobe.



In the afternoon, I started feeling kinda bad. I've been very cranky this weekend because I've had a lot of gas. I used to get embarrassed at how much Mommy talks about it on this blog, but now I just own it...I even poot around visitors and strangers now. Daddy's not a great influence, either..hehe. I wanted to nap on Saturday, but I just couldn't miss anything. Pretty much everyone who knew her tells me that I'm just like my great-grandma, Mama Dot. Dot was nosy and didn't like to miss anything - that's why I don't like to nap! I'm really afraid I'm going to miss something exciting! So not being able to nap and being gassy makes me cranky later in the day. Mommy and Daddy have some friends from church, Rob and Holly and Dan and Joyce, who love our family very much. They've been praying for me for a very long time. We all went to Rob and Holly's house to eat dinner Saturday night. I just wish that I had felt better when I was there. I got pretty fussy, but everybody passed me around on a pillow on their laps, and that made my tummy feel much better. I got very spoiled to sleeping on pillows in the NICU. After I got my last bottle of the day, I felt GREAT, and Joyce held me in her lap during dinner. I talked to her a little, but no one could quite understand what I was saying. I type much better than I speak. Anyway, I finally fell asleep for good on the pillow and snoozed the night away.



After we left, I went straight to spend the night at my Granddad and Nan's house. What fun that was! I slept great and had a great morning. Nan took me to visit her Sunday School class, and they LOVED me. I felt like I had bunches and bunches of grandmothers! Then around noon on Sunday I was playing with Nan and talking to her a lot when I suddenly stopped breathing. Nan tells me it was very scary and upsetting, but after a couple minutes I started breathing again. But phew, it was exhausting. I could barely muster up the energy to eat, and then I just didn't feel good until Daddy put me on my tummy on his lap. After that, I slept for 2 and a half hours, which is very unusual for me. I slept on Daddy's lap and then in the car as Mommy and Daddy ran lots of errands. When I woke up, I ate and talked to Mommy for a while, but then my tummy started to hurt again. I just finished eating my last bottle, and I'll be going to bed soon. Here's a quick picture of me looking at my outstretched hand, which is fascinating me here lately.

Happy great-grandmothers

So Emma has two great-grandmothers, Audrey and Dot, gazing down on her from heaven, proud as can be that she has a little bit of both of them in her: Emma has a pretty bad temper that goes from 0 to 60 in 3 seconds, and she will let you know EXACTLY what she thinks about what you're doing right at that moment. Emma's temper has gradually gotten worse - more screaming and crying over the least little thing, and then her throat starts to close up. That's what's so bad about the temper. Crying because she has a tummyache or a dirty/wet diaper, is hungry or tired...those are different cries, and her throat doesn't close. But for some reason the stress and force of an angry cry makes her throat start to close up, and then we have to try to get her out of it. Then she kind of comes to and gets all groggy. It's all very strange and scary. She started off this way Wednesday night, but then the crying grew into a screaming, cat-like cry that we've never, ever heard before. It was so loud and new that I took her temp twice, thinking that maybe this was a new sickness she'd never experienced. But...no temperature. Our best guess now is that she was sleepy, mad, and had a tummyache all at the same time. Russell put Emma tummy down on a pillow on his lap, and she eventually calmed down and went to sleep. Then came the turning point: the transition to her crib upstairs. I tried to convince Russell that he could sleep in the recliner, but he wasn't buying it. So I carried the little princess upstairs on her pillow...can you believe how spoiled she is?! But if you've had a screaming, crying baby calm down, you do everything you have to to keep the peace.



Thankfully, I got Emma upstairs and in her crib without incident.

Emma's had some more gas pain today - pretty bad pain, actually. So tonight Russell has her draped across his lap on her tummy again, in her good relief position. Lola went back to my parents' house for a few days and came back home again today, so she hasn't been left here at home by herself to act up again. But she sure has become less scared and intimidated by Emma. In this picture, Lola is laid out up against Emma's legs while Russell scratches her belly...and with her head completely hanging off the couch. I have no idea how this is comfortable, but I'm typing this 15 minutes after I just took that picture, and her head is still hanging off, upside down. I may need to make sure she's still alive.



Well, that's it for now I guess. Oh, wait, I did find out a little bit of information about Emma's Chiari malformation decompression surgery from another mom whose child had it and from Vicki, Dr. Troup's nurse. We go to see Dr. Troup on Monday to talk about the surgery and just get more information. Emma will be in the hospital for approximately a week, and she'll most likely be able to lie on her back. The incision will probably be at the top or middle of the back of her neck; it just depends on how far down her brain stem is pulled into her spinal column. I don't know exactly how far down it is right now, but I think I'll find that out on Monday when we meet with Dr. Troup and Vicki.

I have a busy weekend ahead, but I hope to have time to blog a little. Everyone have a fantastic weekend!

New babies!

What a fantastic two days! Our friends, Scott, Laura and big sister Brooke, welcomed baby girl Presley Anne to their family on Sunday morning, and Candace, Tom, and big sister Melaina welcomed baby girl Clara Faye on Monday morning! Congratulations to our beloved friends!

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.