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.

Chatty Cathy

Today Emma had a pretty adventurous day. She woke up at 5:45, which was an adventure for all of us. After she got that first bottle in her, she had a great morning. Emma has been to 4 therapy sessions before today, and she has gotten slightly fussy during all of them until today. My mom and her neighbor, Jan (aka Mama Jan), took Emma to PT, and she was perfect! The therapist was impressed with her improved head control just since last week.

On the way home, Emma threw up in the car BIG TIME. Then she threw up again an hour after her next bottle. Neither of these little episodes were related to choking or burping, which frequently causes some spit-up. Emma also choked while in the tub tonight and completely threw up her entire bottle. Emma is a hard read because she's dealing with poor swallowing. When we hear her getting gurgly in the back of her throat, we've assumed it's because she isn't swallowing her saliva properly...and that's probably part of it. But now we're wondering if her reflux is stronger than we initially thought. When Emma spits up, it's pure slime and has been for weeks now. It doesn't even absorb into a burp cloth. She had a reflux test in the hospital, and it did detect some reflux. Emma's been on Zantac since she was in the hospital, but I started to wonder if maybe it's not as effective as it needs to be (I've heard that it's pretty useless on some kids). So today the pediatrician called in a prescription for Prevacid...maybe this will make a difference in the puking, etc. My only doubt about reflux is that Emma hasn't been in any kind of discomfort, so I don't really know if all this is due to reflux.

Emma was so incredibly chatty today. She has gradually been stepping up her conversations with us, and today she decided to really discuss life with us. She has started reaching for things in the last two days, and she LOVES her fists. Then, to top it all off, she has started smiling more frequently. My mom and Mama Jan brought Emma to see me at work today, and Emma hadn't smiled at them all morning. My sweet baby saw me and gave me three or four gleaming smiles. Now that'll make your day. Here's a video my mom took of Emma talking to Mama Jan. Three things: (1) Comment and tell me what you think is happening at the beginning of this video when Emma shivers/shimmies; (2) Emma might make even more noise if she would take that fist out of her mouth! and (3) She hasn't been around our dog that much, but she's picked up on how to howl.

The witching hour

We are definitely open to having visitors to come meet Baby Emma, but here's the catch: she is an amazingly happy baby...in the morning. Any mom will tell you that babies have a "witching hour." It's that time of day (usually in the evenings) that babies get cranky and fussy. Emma's is definitely in the evening. Visitors obviously come in the evenings. So her visitors get to see a cranky baby who doesn't want to be held sometimes, and if she IS held, she demands that you walk, stand, and/or bounce her. If you don't do those things, she'll let you know EXACTLY what she thinks about your childcare ability. So if you want to come visit a happy baby who won't make you pace around our den, please come visit sometime between the hours of 7 am and 11 am. Here's a happy baby Emma snuggling with her dad first thing in the morning and also laying down easily and peacefully to have her diaper changed:





I'm not going to post a picture of her screaming...who wants to see pictures of a screaming baby???

Please note that Russell chooses to hold her when she's being sweet and fun. Just kidding, Russell - you're a great dad. Love you.

Our wonderful church, Earle Street Baptist Church, does a 4th of July celebration every year. It's located in the beautiful historic Earle Street neighborhood at the north end of downtown Greenville. They have a parade down Earle Street with kids, dogs, etc. on their bikes, followed by a cookout at the church and patriotic music. It's really fun every year to hang out with our church family, and you can either watch the downtown fireworks from the church parking lot or make the quick drive downtown to see them. This year the church is graciously donating the proceeds of this event to our family to help with our medical expenses...Miss Emma is turning out to be an expensive baby! On one hand, I am so honored by our church's generosity that I feel that I have to mention it here in the blog and to invite any of you out there who want to attend...on the other hand, I'm so flattered and overwhelmed with emotion that I don't actually know the words to fully express what I'm feeling. The parade starts at 7 pm, and dinner is at 7:30 (for $5: hamburger, hot dog, or brat plus beans, cole slaw, chips, cookie, and drink). Downtown Greenville fireworks start at 9. Oh, and bring a lawn chair or camping chair. Here's a map to the church:


View Larger Map

I really hope a lot of you can come, and not because it's a benefit for our family; we're not looking for a handout. I want the whole world to know how incredible our church is - and we knew this long before Emma came along. Emma's presence in our lives has confirmed what we already knew about our church.
Side note: back to the witching hour...yep, same time as the 4th of July celebration. I apologize in advance to those of you who will meet Emma that night...let's all start praying now that she's sweet. Otherwise, the church may change its mind about donating the proceeds.

Emma had a pretty rough day today. In the last couple of weeks, she has started spitting up A LOT when she chokes and burps. Our best guess is that her abdominal muscles are stronger now and contract stronger, making her puke. I hope this stops soon...anyway, she has choked a lot today, and some of them have been pretty bad. I'm so afraid that she's actually going to choke on the vomit, too. I cried yesterday and today for the first time in a long time. My emotions are getting the best of me again, and I don't know why exactly. Tonight it was because her choking spells were so bad, so frequent, and so upsetting to HER. It kills me when they scare her. How many times can I watch my child turn blue and wait for her to take that first sacred breath? God is teaching me more and more every day what it means to really trust Him - trust that He will take care of her when she chokes in her sleep and we don't hear it; trust that He will protect her lungs from being damaged by any saliva or spit-up that she aspirates; trust that He won't let her annhilate by way of vomit anything that's not washable.

Here's another really funny picture of our fat, fat baby. We can't quite put our finger on the animal impersonation she's making...frog? Catfish? It's really not a cute, flattering picture of her, but I just think it's hilarious.

Has it really been that long?

I just realized that it's been 5 days since I last blogged. I'm not so delusional as to think that our friends and family are on the edges of their seats waiting for me to post; I'm amazed and feel immensely blessed that so many of you care for and love our Emma so much that you actually WANT me to keep the blog updated more often than every 5 days. What a testament to God's love for us.

So much has happened this week. Emma had her first vaccines on Tuesday, and she barely flinched over the shots. "Big deal," she said. "I've been poked and stuck more times than you can shake a stick at." She's 13 and a half pounds and 24 and a fourth inches long. Russell calls her fatty bobatty. Here's a really funny picture of the fat face she makes when she's tired. She pushes all her chin fat forward and pooches her cheeks and lips out.



On Wednesday, Emma had another swallowing study. This study didn't show us a whole lot more than the first time it was done in the hospital, except that her swallowing hasn't gotten worse. Emma started eating thick formula and moved to slightly thinner formula. They could see on the X-ray that she started to aspirate some of the thinner formula into her lungs. Luckily she pulled it back out and swallowed it, so they stopped the swallowing study at that point. I know this all doesn't sound great, but the speech therapist and radiologist were encouraged. The speech therapist especially was pleased that Emma's swallowing hasn't worsened. On top of that, if you've ever met Emma in person, you may have noticed that she clears her throat a lot. The speech therapist says this is a good thing as well; if she clears her throat and coughs occasionally, she has good sensitivity. Her body's natural reaction is to clear whatever's stuck in her throat. The next step is to have an appointment with Dr. Troup and see what he thinks about the results. We'll have a visit with him soon to discuss doing Emma's Chiari decompression. That surgery could be coming up in the next couple of months.

Also during the swallowing study, Emma became a star! The therapy office she goes to is starting a new website or something, and they were thinking of some cute kids to take pictures of for the site - they thought about Emma! So she got a few shots taken; unfortunately, I was in them as well. Y'all, I was looking ROUGH. I had to do a warehouse inventory for work that morning in our unairconditioned warehouse...and THEN take pictures?! Yikes.

Emma had physical, occupational, and speech therapy this week. PT and OT mainly focused on her head control and arm strength. Emma's head size is in the 99th percentile, so she can't control it quite as well as other 3-month-olds. I know that the 99th percentile sounds like she'd look kinda freakish, but I swear she doesn't. As I noted a blog or two ago, I couldn't possibly imagine what speech therapy would be like for an infant...here's the explanation: speech therapy is more than speech - it's also about cognitive development based on our interaction with Emma. I gotta be honest - speech therapy for an infant sounded like hooey at first, but it was really fascinating to hear about the studies that have been done regarding infant development. Here are some pictures from Emma's occupational therapy: she fell slap asleep during part of it! Check out the fat arms and leg cellulite.





Russell and I officially enrolled in a genetics study this week. It's hard to explain the deal about spina bifida - they say it's not hereditary, but it's still a genetic disorder. I don't know. Anyway, the Greenwood Genetic Center is a pretty big deal in the world of genetics, and a nurse came to our house this week to conduct an interview and take blood samples from me and Russell. They will pay for my multivitamins and for my jumbo doses of folic acid. These are only jumbo DOSES, not jumbo pills. I'm currently taking 4,000 micrograms of folic acid per day; the recommended amount for prepregnant and pregnant women is 400. I've been taking 500 for years. Anyway, they'll pay for all my vitamins through the study, and we'll become one of their statistics if we have another child naturally: a second child with a neural tube defect even when taking 4,000 mcg of folic acid or a second child without a defect. Russell got stuck 3 times because his veins roll around a lot in his arm. So that's where Emma gets it.

Emma had an appointment with the hospital pulmonologist on Thursday. We're not sure why we had to go see him. This is the guy who did 2 bronchoscopies to make sure she doesn't have vocal chord paralysis. I honestly think he was expecting to find a child who was withering away. He was shocked that she had grown (um...hello...that's what children do: grow. Aren't you a PEDIATRIC pulmonologist?) and that she was awake and alert and happy. Then she choked...and it was a bad one. That doctor FLIPPED OUT. He ran outside and asked if she needed oxygen and was just freaking out in general. Of course, Emma brought herself out of her choking spell. The best part is this: my mother-in-law, Mary Jane, was with me. Mary Jane was wearing a shirt with a regular scoop neck and then a little keyhole opening below the neckline. Well, Emma mistook this doctor's visit for target practice. After she choked, she puked and hit the bullseye: right through the keyhole so that the puke started to run down inside MJ's shirt. So on top of the doctor flipping out about the choking, he also was trying to figure out how to help MJ (who wasn't upset by the puke at all) clean puke running down her shirt. He finally just handed her some paper towels, rather than dab the puke on a rather personal part of her body. MJ and I have really gotten some chuckles out of that.

While Emma was in the hospital, they had a photographer there who was taking pictures, and we took advantage of this "complimentary" service in the hospital. Luckily, my in-laws and my parents were there, so we all got pictures with Emma. However, I haven't seen them. But they're coming this week! I don't know how many or how good they are (there's only so much you can do in a hospital room), but I'm excited to see how they turn out. Even more exciting than that, though, is the portrait session we had today with our friend Susan Brewer. She is WONDERFUL. Check out her website. We're going to have some fantastic shots from our session with her today...oh, I can't WAIT to see them!

Ok, I think I've pretty much caught you up. Big week, huh? Miss Emma has been an angel this week, for the most part, and she's been sleeping great. Oh, except for last night. We only slept for about 5 hours. Call me boastful, but after all we've been through, I'm the QUEEN of finding the small blessings in life. One of those small blessings (well, actually, it's a big one) is that when Emma was going through the newborn, middle-of-the-night-feeding stage, she was in the NICU. So Russell and I were able to sleep peacefully at home. I guess we should just suck it up and deal with the less restful nights that we'll experience here and there now.

Back to the real world

I officially went back to work today. Yes, it was hard, but easy, too. The things that made it easy are as follows, in no particular order: (1) my mother-in-law spent the night, so I had no worries about getting Emma anywhere by a certain time; (2) Russell woke up in time to help with Emma if she decided to get up while we were getting ready; (3) my coworkers are wonderful; (4) summertime is business casual dress. I obviously wanted to be back home with my sweet baby, but it was nice to work again. And the work wasn't stressful, either. That can change at any moment, but it was a nice day to go back to work.

Let's see, I think my last post was Thursday...what's happened since then...oh! Occupational therapy on Friday morning. That went well. Emma was in a pretty good mood until she was wet/dirty and/or hungry. Then it was all over. The occupational therapist was wonderful, and she did some things to loosen up Emma's arms and hands and work on her upper body strength. And neck strength. We went out to eat with a delightful couple from our church Friday night. Saturday morning we woke up to Emma having a terribly hard time breathing, but she was herself again by midmorning. We had a great weekend with some visitors, too. Father's Day was wonderful for all the men in our family but I think especially meaningful for Russell's first Father's Day ever and my dad's first Father's Day as a granddad. My parents graciously had me, Russell, Emma, my mother- and father-in-law, my brother- and sister-in-law, our nephew, and my parents' neighbors over for Father's Day dinner. Emma had a good day today, but she had some pretty bad choking episodes.

Last night we learned our lesson about Ultimate Crib Sheets. If you don't know what they are, find out. Ok, I'll tell you: a crib sheet has white fabric on top, vinyl on the back (read: waterproof or bodily fluidproof). It doesn't wrap around the sides of the mattress; rather, it's flat on top, and it has these little elastic straps on the edges that you wrap around the crib slats. You keep your regular crib sheet on the bed underneath. Then, in the middle of the night when your baby's diaper fails you miserably (as it inevitably will), you don't have to struggle with removing a sheet (and possibly a mattress cover) and putting a new one on; you just take the Ultimate Crib Sheet off and ta-da! Clean sheet underneath. We've been great about keeping these sheets on Emma's bed. So far, no accidents. So of course, last night, the one night we don't put one on her bed, her diaper seemed to be nonexistent. We had to wake her up (and greatly anger her) getting her out of her crib, take off the crib sheet and the mattress cover, and struggle to put on another crib sheet and Ultimate Crib Sheet (I repeat, lesson learned). Drop side cribs are dangerous, but they must be so much easier to put a sheet on. Anyway, my mother-in-law did Emma's laundry today, and I was breaking a sweat this evening taking off the 3 am crib sheet and Ultimate Crib Sheet and then putting back on the mattress cover, crib sheet, and Ultimate Crib Sheet. God has blessed us mothers with Ultimate Crib Sheets, and I will never again take this divine blessing of modern motherhood for granted.

It's late as I write this blog, so it's time to cut it off. One reason it's late is that during the summer, I'm working longer hours Monday through Thursday, and I have Fridays off. When I came home, Russell and I educated my mom on Wii Fit - she loved it! So of course I had to get some Wii Fit time in as well. Then my mom and I took a very sticky walk through the neighborhood. I've got about 15 pounds to get off, and I don't know when I'm going to find the time to do this without sacrificing my sleep. Tomorrow Emma goes to the pediatrician for shots and a well child visit. She has another swallowing study on Wednesday, 3 more appointments on Thursday, and 2 appointments Friday. Busy girl.

Here's a picture of one of our visitors since Emma has been home. Dan is a good friend of ours from church, and he and Emma had some great bonding time. The thing I love about this picture is that it looks like Emma is warning him with her little fist: "If you don't spoil me rotten, I'll knock you into next week."

Maybe 3 days in a row is pushing it

We took Emma out for errands for the third day in a row today and learned a valuable lesson: although she enjoys the car, she will only sit in it for so long. The other days we've taken her out, she's been in her stroller a lot more. Today she stayed in the car a lot and wasn't thrilled about it towards the end of the day. But overall, she was a great baby today!

We're about ready for her to be over her little cold. She picked it up over a week ago at the hospital, and she's still a little snotty in the morning. The big problem, though, is that we think all the mucus is draining into her tummy and making her full. She spit up 4 times today (and she doesn't normally do this) in response to 1 burp and 3 choking episodes, and it was pretty slimy coming out. Gross, huh? We still get very frustrated that with all Emma is dealing with, she has diaper rash, gas, and a cold. Really??

Tomorrow morning (bright and early - 8:00), Emma has her first occupational therapy appointment. I have no idea what to expect from this, considering her main needs are along the lines of physical therapy and speech therapy. She begins these two therapies next week. Speech therapy for infants - yes, it exists. Speech therapy is actually what helps kids who have throat issues swallow and eat better. I don't know what to expect from that, either. My wonderful mother- and father-in-law are spending the night tonight, and my mother-in-law is going to occupational therapy with Emma and me.

That's about all for today - nothing very exciting. I will say, though, that God has blessed us with 3 really fun days of cruising around town with Miss Emma.

Happy 3 months to Emma!

Our sweet Emma was born 3 months ago today on March 16! In other news, Emma is officially mobile. Well, let me back up a bit.

Emma had a great morning and early afternoon on Monday. We went to the doctor and rode in the car for a while. She LOVES the car! Emma had a rough afternoon and didn't breathe well for a while. We gave her some medicine to calm her down a little on Monday night, and she slept like an angel all night.

We had grand plans for Miss Emma on Tuesday, and we carried them out beautifully. Emma went to my parents' house for the first time until about lunchtime. Then we went to a childrens' store here in Greenville and to visit my coworkers. My grandmother (Memaw) will be 100 years old in July, so we wanted to go ahead and get a picture of her, me, and Emma. Memaw is in the very late stages of Alzheimers and can't really put words together very well; she doesn't know who we are or anything, but we were able to get a great picture or two with her. Then my mom, Mama Jan (my parents' neighbor and Emma's adopted grandmother...not to be confused with Mama Jane, my mother-in-law), Emma, and I went to the outlets in Gaffney. Emma ate in the car in the parking lot and then loved her stroller so much that she fell asleep for our shopping trip. She was angel during the ride home and wasn't too fussy until about 8:00 at night. Then she slept all night again Tuesday night.

Today, Wednesday, was another grand day of travel for Emma, but not as much as Tuesday. We went to see Dr. Troup this morning for a post-hospital visit, and he wants to have another swallowing study done on Emma. The first one was done after she'd had a ventilator in for 5 days, which can make her swallowing worse. In addition, swallowing can improve over time. Anyway, that study will be in the next week or two, and then we'll go back to see Dr. Troup again. After THREE HOURS at Dr. Troup's office (they were very apologetic for the long wait, and it's not as bad when you have a good and entertaining baby with you), we ran a few more errands, and Emma was an angel. She was great all day and a little fussy in the evening, but not bad. Today was my mom's birthday, so my parents and Russell and I went out to eat at Giovanni's while my in-laws watched Emma.

Any of you who have visited Emma in the hospital or at home know that she's a loud breather - the noise is actually called stridor. This is because she has tracheobroncomalacia (floppy cartilage in her trachea and bronchial tubes); when air goes through these passages, it's just noisy. She will grow out of this. However, in the meantime, she sounds like she's having a severe asthma attack all the time. When we took Emma to the doctor's office on Monday, we were walking in when another mother was going back with her child. A nurse came out a few minutes later to make sure Emma was ok because the mom who had gone back was concerned that something was seriously wrong with Emma. We told the nurse that the stridor was normal and that she was ok. Mere minutes after the nurse left, a man sitting in the waiting room said, "It sounds like she's having trouble breathing..." Yes, we know. We appreciate everyone's concern. I'm going to have to have a cute little sign to put around her neck that says, "I'm a loud breather, but I'm ok. Nobody panic. You do not need to call 911, but thanks for your concern. You're welcome to squeeze my fat rolls and check out my long eyelashes instead, though."

We have a few more plans for tomorrow with Mama Jane - hopefully some more errands! Emma's not exactly the easiest baby by yourself, but she's very easily managed with 2 people. Especially grandmothers who can't keep their hands off her anyway :) Oh, I forgot to add that I'm very proud of my mom - today I told her that after we got Emma back in her car seat that I was going to make my mom learn how to fold up the stroller. I put Emma in the back seat in 5 seconds, and by the time I got to the back of the car again, Judy was standing there with a folded stroller and a smug look on her face like, "What, THIS stroller? I got this." Show-off. I had to practice a few dozen times before I was remotely able to operate the stroller.

Here are a few more pictures of Emma. We let her hang out in our bed for a bit last night, and she loved it. Those pillows are much cozier than her crib.





This is Russell's favorite thing ever - no explanation needed.





Here Emma looks like a precious little schoolgirl having lunch, with her ruffled skirt and Mary Jane socks sticking up.




PS - On a blog post the other night, I discussed a verse that has become very important and meaningful to me, and I realized later as I was lying in bed that I put the wrong verse location on the blog. The verse I was talking about is in 2 Corinthians Chp. 1, NOT 1 Corinthians.