Lots to tell

Last week Emma had a very important visit - she went to the First Presbyterian Healing Service to meet, in person, another one of her "families." After we learned of Emma's diagnosis last year, we began visiting the Healing Service at the invitation of some friends of ours who are members at First Pres. Over the following months, these prayer ministers prayed and loved and loved and prayed over our baby girl! So we finally had an opportunity to bring Emma to meet these loved ones. But first...

We were getting Emma dressed to go, and Russell was putting Emma's tights on her. He got this far



and said, "I just can't do this to her." Men. Please. Welcome to our world.

Anyway, when we did make it to the Healing Service, Emma really enjoyed meeting everyone after the service was over. She was a little hyper, which was just funny. So it was hard to get a good picture of her at the front of the chapel, especially since her mouth falls open in amazement as soon as a camera goes up.





We have no idea why, but Emma has started holding her arms up in the air when she eats. Imagine if we all did some sort of arm workout as we ate (besides the act of bringing food to our mouths!).



Emma had a few tests done on Thursday at the Shriner's Hospital and at the regular hospital to check on her bladder and kidneys. Her bladder is just a little small, but there's really no change since the last time they did this test. Her kidneys look fine, too. They're culturing her urine to make sure that her bladder infection is gone - hopefully it is, but even if it's totally gone, we'll still give her an antibiotic every day in case her bladder doesn't fully empty on its own. If it doesn't empty, it can allow bacteria to grow. As far as what to do about this later...we'll worry about it later. In the meantime, all we can do is give her an antibiotic, and that's what we're doing. Done with that topic.

Our nephew, Mason, turned the big 3 on Friday, and his birthday party was Saturday afternoon. He really enjoyed his tractor party, and Emma tried to enjoy it. She slept on the way there and on the way back but never REALLY got a good nap in. So she spent all of Mason's party wavering between sleepy and happy. Being outside generally makes her happy...so it also kept her awake. As a result, she slept for 12 glorious hours Saturday night. Here are a few shots of her loving on her sweet ZeeZee:







And here is a pitiful, stop-taking-pictures-of-me-and-let-me-sleep look Emma was giving me in the car on the way home before we both fell asleep.



After sleeping so well on Saturday night, Emma didn't sleep so well last night. She was very upset for a while Sunday evening, and she woke up a couple times during the night crying, almost like she was in pain. A new tooth perhaps? She drools all the time anyway, so that's not a good gauge...she was chewing on her burp cloths pretty intensely yesterday...I hope that's all it is.

You know what really annoys me?

Those parents who put those ridiculous hats on their kids' heads.

Our poor little sick one

I mentioned on my last post that Emma had the beginnings of a cold and that it wasn't bad yet. How quickly that changed. I stayed home from work on Wednesday to take care of her and take her to the doctor. The doctor confirmed that it's just a cold and that there are no signs of infection anywhere. That's really important because a bad infection could really harm my mom, who has severe asthma. So Emma had a few bad nights of trying to sleep, but bless her heart, she just couldn't breathe. Having her binky in her mouth is what really puts her to sleep, but she couldn't breathe through her nose, so she'd spit the binky out, and then she'd cry, and we'd put the binky back on...and you can see how this vicious cycle can last for hours at night. All in all, though, Emma really did the best you could expect. She was in a great mood during the day all week, even though she had some of the worst choking/coughing fits I've ever heard. She just never could catch her breath and would choke continuously for 5 to 10 minutes.

Today we could tell a big difference in Emma's cold recovery - she didn't choke nearly as much. We had such a nice, relaxing Sunday, and I couldn't have asked for a better day with my family!

Emma has been REALLY into trying to sit up. The problem is that her trunk control isn't the best because her head is technically still pretty big for her age. So you still have to semi-support her and make sure she doesn't just tip over. And sometimes she gets FURIOUS if she can't sit up exactly how she wants to. A slight recline isn't good enough. So one night this week she helped me fold laundry - she got to sit up AND play in the clothes.




PS - Buy our house!

We'll make this one short and sweet...

...because the chicken's in the oven and Emma's taking a much-needed nap.

Here's the short: Emma has a cold. It's not terrible...yet. She has slept pretty well at night in spite of it.

We had a delightful visit with my cousin and her daughter...who would be my cousin, too....actually, they're like fourth cousins, 3 times removed or some crazy relationship that I could never actually figure out how to label. Anyway, Jones just turned one year old, and she and her wonderful mommy, Alison, were sweet enough to come over since it was Election Day and I had the day off. And we somehow didn't take any pictures...Alison, what were we thinking?

Here's the sweet:



Laughing at Daddy




Happy to be a Tiger (before they lost to Boston College)


Being goofy with Daddy and sucking on her binky backwards

Welp, nap's over. That was a short 45 minutes!

Happy Halloween!

Sweet Emma was a Sweet Pea for Halloween tonight, and we made a few stops to visit our friends and family.





She was very tired, so we didn't get many smiles out of her. In fact, she was ADORABLE dressed up in her little outfit, asleep in the car.

Emma had a pretty good week this week. Her choking episodes were not as bad from day to day...well, a few were very severe, but she's not doing it quite as often as she has been for the past few weeks. We guess that her bladder infection is getting better now that she's been on antibiotics for a few days. She slept really well Thursday and Friday night - 11 hours straight, no cranky wake-ups! Last night was just ok. I'm hoping that the bladder infection was making her uncomfortable at night and that she will start sleeping like her old self again.

Emma got to spend Thursday night with Mama Jane and Granddaddy because I had a wicked cold at the end of this week, and we were trying to protect Emma. So she was spoiled rotten by them Thursday night and all day Friday. Larry helped us out by doing a few little handyman tasks around our house. They were even sweet enough to keep her Friday night for us while we went to our Sunday School class's Halloween party. I was a cowboy, and Russell was an Indian. We were also joined at the party by the cast of Jersey Shore, Flo the Progressive Insurance rep, the World's Greatest Spokesperson in the World, Taylor Swift, a Chilean miner, Kate and Jon Goslin, a stewardess and pilot with Awesome Airlines (tagline: We'll take you anywhere you want to go...as long as it's Disney World), a hunter and his buck, a banana, NCIS forensic specialist Abby, 2 smart asses (donkeys), Rachel and Finn from Glee, High School Zack, and an anonymous conglomeration of household items.

Some unexpected bad news

Today I received a phone call from the wonderful spina bifida nurse at the Shriner's Hospital. We visited Shriner's 2 weeks ago, and they tested Emma's urine as part of her appointment with the urologist. Emma had a bladder infection this summer, and it was all cleared up in August. But then I got a phone call this morning that the bladder infection is back again. No one wants a bladder infection, but we REALLY don't want one for one main reason: if Emma's bladder isn't fully emptying, bacteria could be growing, and we will have to start cathing (slang/short for catheterizing) her. I just can't even go into all that is involved with that (not that you'd wanna know all the details). I guess I didn't think we'd have to cath her this soon.

They believed the last bladder infection was caused by all the loose baby poo in her diaper; however, all that has changed since Emma started eating baby food. Now it's not as gross as it used to be. In case you're eating a snack while you read this, I'll try to keep it clean. There are some things going on with her poop that could possibly be attributed to teething, and these things could, conceivably, result in a UTI. The nurse pointed out that the last UTI was clear at the end of August, but that was still a couple weeks before Emma started baby food. So there's a chance that it could have come back in that end-of-August to middle-of-September time period...which makes me feel like a horrible mom because that means that my child has had a UTI for over a month, and I've done nothing about it. Then I thought that if she's had a UTI for that long, wouldn't she have developed a fever by now? Nurses, any answer? (I didn't have this thought while I was talking to Jean, of course.)

So the plan for now is to put Emma on a twice daily antibiotic for a week and then have her on a lower dose once a day inevitably. She goes back for a renal ultrasound and some other test in November, so they'll test her then to make sure the bacteria is gone. I'm pretty sure we won't see the urologist that day. But then they won't make a final decision about the daily antibiotic vs. beginning to cath until she sees the urologist again. To be honest, I'm not exactly sure how they'll make that decision, nor when we're seeing the urologist again. One visit at a time - November is what I need to worry about next.

Perhaps this is the reason that Emma has been a little cranky lately, ESPECIALLY at nighttime. We've also even said that her fussiness isn't always that long, drawn-out whine (moms, you know what I'm talking about); sometimes, it's a very sudden, loud scream like something really hurts. Yes, I want Emma to feel better, without a doubt. I just pray that it's a routine UTI and nothing more at this point.

I have to remember that God is good and that He is looking out for our little girl. Some days are harder than others to feel this in my heart. I think as long as I have that notion in my head, I'll be ok - let's be honest: some days it's harder to believe in our hearts that God is good. I'm not ashamed to admit it because I know that ultimately God's GOOD will will be done; some days it's harder to accept the path that we're on in fully receiving His will. I've gotten myself all worked up over this phone call, and it could just turn out to be a small hurdle that really wasn't a big deal. Then again, in my world, my child is a big deal.

Tonight we went to the Young Life banquet. If you're not familiar with Young Life, you need to be. It's an incredible outreach organization to mainly high school kids, but middle schoolers, too. Although I grew up going to church, I completely attribute my personal relationship with Christ to Young Life. I became involved in Young Life in high school and then became a high school leader when I was at Furman. Now my best friend Holly works for Young Life here in Greenville, and I'm happy to stay tied to the ministry in some way. Russell and I have hosted a table at the annual banquet for the last several years. This year we needed someone to watch Emma, and that someone was first her beloved Aunt Ally and then Mama Jane and Granddaddy. In other words, Emma was completely spoiled rotten today.

How do people do it?!

I just don't know how moms can work and have more than one child. I can barely make it with one child! I know that it's been an awfully long time since I've last blogged, and I have many, many excusesImeanreasons why, but I won't bore you with the details of my life as a working mother and wife during football season.

Not a whole lot has happened medically since I last blogged. Emma had her first monthly round of Synagis shots last Monday. Synagis is a medicine designed to increase a child's resistance to RSV, a very dangerous winter-time virus. It's usually only kids with respiratory issues who get these shots. Although Emma doesn't have trouble breathing like kids with asthma do, a severe virus could still send her to the hospital because it would cause even more throat issues. Emma has had several vaccination shots in her thighs and hardly flinched. But Monday, the nurse warned my mom that these shots can be pretty bad, and she was absolutely correct. My poor little girl was in quite a lot of pain with those shots, and we think her legs were sore for the next couple of days, too. I think we've moved past the effects of those shots, but something else isn't quite right with Emma.

I was out of town Monday night and Tuesday night, and Emma really gave Russell fits. We have certainly been through our share of heartache, but please don't think that Russell and I have lost sight of one very big blessing - we slept so well for the first seven weeks of Emma's life. She was cared for by some loving NICU nurses while we snoozed, uninterrupted, in our cozy bed. Praise Jesus. Well now Emma has started crying in the middle of the night, ranging from one to two times a night to every hour. A 3rd tooth? Maybe. Uncomfortable? Maybe. Bad dream? Perhaps. Whatever it is, putting her binky back in fixes it. But still - what happened to our good sleeper? She still is only REALLY ready to wake up for good around 7 am, and we are still quite grateful for that.

As I mentioned, I was out of town for a few days this past week. Russell was the perfect husband while I was gone - he emptied the dishwasher, steam-cleaned the bedroom carpet, did 2 loads of clothes, and took care of Emma AND Lola. He got some help from my mom, but I couldn't have asked for a more helfpful husband while I was away.

Emma was dedicated in our church last weekend, and it was a delightful ceremony. Emma did pretty well - she was very vocal. Not cranky, just talkative. She really enjoyed walking around with Stephen, our pastor, and from what I could tell, she stared at the congregation with her mouth hanging open. Lovely. Stephen mentioned the struggles that Emma and our family have faced, and I definitely got a little teary-eyed. What I didn't know until later was that a lot of other people got emotional as well. Our church has been so loving and supportive, and it meant so much for us to present Emma to God in front of her biggest supporters. And I'm so flattered and grateful that it was meaningful to our church, too. Don't think I'm a bad mommy, but I didn't take any pictures of Emma that day. I was a little busy. But I know my family took a lot, so I'll try to get some of those and post them on the blog. The really tragic part is that my dad has some great video, but I can't get the files converted to allow me to edit the content down. I'm not too bad with technology, but I think I've reached my limit there. I'm sure I could manage with a few hours of research, etc., etc....I love you all, but my time is more valuable than that.

Oh, and buy our house!

PS - Diaper rash update: Clean as a whistle. Thank you, solid food. Thank you.

Taking advantage of the blog...

...but it's not entirely selfish! I'm going to do some advertising here: we've decided to sell our house. Who wants to buy it?!

We have a 3-story townhome in Greenville that we LOVE. We really, truly do. But we knew that we wouldn't stay there forever, especially now that we know that Emma will have some challenges with walking. Interest rates keep going down, and Russell and I have found a one-story home that we really like. So we decided to go ahead and bite the bullet to list our house for sale by owner. We are listing through an organization called Greater Greenville For Sale By Owner.

If you know of anyone who would be interested in our townhome, please send them to the link I listed above. We have delightful neighbors (including my best friend across the street!), a cozy little street, and a beautiful, well-maintained home. It's right in the middle of Greenville, and we've gotten spoiled by the location - the house we want to buy is only about a mile away! It's amazing how our neighborhood and neighboring communities can be so welcoming and quiet, yet the bustle of everything you could possibly need in Greenville is minutes away. These townhomes are also great rental properties. Russell and I considered renting it, but it would really be too much work with a special needs child and both of us working full-time jobs. Sometimes you just have to let go. You can see details on the property website, but here are the high points:
- 3 bedrooms
- 3.5 baths
- 2nd story deck
- laundry room on 2nd floor
- garden tub and walk-in closet in master bedroom
- privacy fence in back (great for dog-owners!)

This seemingly shameless use of our daughter's blog really is for her own good - the house we have found is wonderful. It's one story, with a level back yard and a deck that could easily have a small ramp put on it if necessary. The streets nearby are level, which would allow us to walk with her through the neighborhood eventually.

Please, someone buy our home!!

Let me tell you a little something about Russell...

...he's not lazy, but if he can find somebody to help him do some manual labor, he'll sign 'em up. Even if they're 2 years old. This past weekend we visited Russell's parents' house. Russell, his dad, and his brother were covering their pool for the winter, and Russell enlisted our 2-month-old nephew, Mason's, help. You can hear Russell say, "Pull, boy!" and then he says, "Pull it that way, pull it that way." In the meantime, Allison, my sister-in-law, and I were sitting in the shade with Emma, cracking up at Russell's instructions and at how well little Mason was helping. Of course, Mama Jane rescued Mason from his manual labor. And don't worry, we had 6 sets of eyes watching him to make sure he didn't get too close to the pool.




Allison was holding Emma in her lap while we sat outside. Being outside is some sort of natural sedation for Emma. She immediately gets this relaxed, comatose look on her face.



As time went by, she started to get hot. We started with clothes on:



and ended up with our fat rolls hanging out.



Emma also put on her Tigers cheerleading uniform, only to watch them lose :(





Touchdown!

She might be tailgating with us this weekend, so we'll give that little outfit another shot against Maryland.

Emma went to see Dr. Troup on Monday for a follow-up visit. Dr. Troup is going to hold off on doing Emma's decompression surgery until the springtime at the very earliest. Because Emma has respiratory and throat issues, it's not wise to intubate her for an MRI or surgery, especially during the wintertime with all the colds, bugs, flus, etc. If Emma does catch some sort of bug that she just can't get through by herself, she may have to go back to the hospital this winter...with the possibility of being intubated. So we're going to pray that God blesses her with health this winter! Emma is still choking on her saliva between 10 and 20 times per day, and we will also continue to pray that God will work in her body and heal our baby girl's throat and brain stem.

We also went to the Shriner's hospital today to see the urologist, Dr. Teague. He is simply wonderful. The whole time he spoke with us he let Emma hold his finger. He didn't really say much about Emma, except to give us a plan. The way that the spinal cord works is that the very, very bottom of it controls the bowels and bladder. So even if a child with spina bifida can walk, etc., they are still almost always guaranteed to have bowel and bladder issues. These problems vary in severity and type. So far, Emma doesn't have many immediate issues, but this can change...and quickly. For that reason, Emma has to have renal ultrasounds and one other test every 6 to 8 months. This can detect any problems that need to be treated so that her kidneys and bladder don't end up damaged. It's good for us to know what the future holds, but at the end of the day, God has blessed us with today. Today Emma smiled a lot and figured out how to play with the toys attached to her swing. Today Lola gave Emma her nasty chewy toy. Today Emma enjoyed her naps in Nan and Daddy's arms. Today Emma choked about 15 times. Today Emma threw up in her car seat. These are the blessings and the worries of today, and God is in control of both.

Well hello there!

Tada! Tooth number two! We had no idea Emma was THAT close to getting her second tooth in, but I got a phone call this morning from my mom saying that it broke the skin overnight, and you can actually feel it now. We knew it was on its way, but wow...this one came on fast.

God has certainly blessed us again - a child who doesn't mind teething (so far)! After all she went through in the hospital, I think her threshold for pain is really high. She loves to throw her arms all over the place, and she keeps scratching her face. Emma has a HUGE scratch between her eyes that she didn't make a peep about when she did it, and she hasn't cried once about a shot. That's our tough little girl.

Emma's choking has gotten better in the last couple of days - we're back down to about 10 times per day again. Please pray that it continues to get better and one day, eventually, go away altogether!

Emma visited one of my mom's former schools today and thoroughly enjoyed herself. They stayed for quite a while, and I hope our sweet baby girl stole a few more hearts today.

No news is good news

I know that it's been a while (a LONG while) since I've blogged. I can't really say that nothing has been going on...rather, TOO MUCH has been going on! Life just gets so busy. But as far as Emma's news goes, it's all pretty good.

She went to the pediatrician 2 weeks ago, and she weighed 18 pounds, 4 ounces (85th percentile). She was 25 3/4 long, which was in the 47th percentile. Once again, all that rice cereal we have to give her packs on the pounds, but the pediatrician isn't worried about it, at least not at this point. Emma is enjoying her baby food, but we can't get a great read on how she feels about green beans. Sometimes she makes the funniest this-stuff-is-disgusting face, but other times she eats it fine. So far, Emma has had applesauce, carrots, bananas, and green beans, and applesauce is by far her favorite. Here's a great video of several things: (1) Emma's love for her applesauce while simultaneously being suspicious of and fascinated by the video camera; (2) one of her new favorite pasttimes - sucking on her bottom lip; and (3) a brief glimpse of a smile.



We've just discovered that Emma's second tooth is going to be making an appearance soon! You can barely, barely feel it, and when you look down in her mouth while she's smiling, you can definitely see it starting to come in. Any day now! Luckily, Emma wasn't too fussy with the first one, so hopefully this second one will only bring us a night or two of brief crying as well.

Emma had a CT a week ago, and Dr. Troup will look at it and give us his thoughts on it next Monday. I think the CT is really only going to show how her ventricles are doing, to make sure that the fluid is draining off of them well and that her shunt is really doing its job. Emma was so good for the CT. They basically taped her head down and wedged it between rolled up sheets and THEN wrapped her up in one of those heavy iron aprons. I had to hold her chin in place to try to keep her from moving her head too much, and she did pretty well with it. Of course, she wanted to move her head all around to check things out, but I believe they got the pictures they were looking for. Here's a quick one I snapped with my phone (therefore, the poor quality) right before she took the big ride into the machine.



Emma has done really well at therapy lately. She uses her left arm ALL THE TIME, and they want her to get used to using her right arm. Emma has to sleep on her side, and whatever arm she's not lying on goes flying back behind her...so now she sleeps on her right arm so that it's pushed forward. We asked for it. Her infant carrier rattles are all on the right side, and she constantly plays with them with her right hand now. I think this is just the beginning of parenthood with toys that make noise. Emma hates to be on her tummy, so it might take a while for her to crawl for that simple reason. Most babies with spina bifida either don't crawl at all or they're delayed because of their limited mobility, but Emma actually does really well pulling her legs up. She's making great strides with her cognitive development, especially considering she lost so much time laid up in the hospital (11 of her first 12 weeks).

As far as Emma's choking goes, it's been pretty bad the last few days. She has scared a few people by it, but Emma doesn't get very upset. In fact, during one of the worst episodes she's ever had last week, she looked up at me and my mom and smiled in the midst of trying desperately to catch her breath. It was so cute and sweet yet pitiful at the same time. It almost seemed like she was saying to us, Don't worry, I'll be ok...just give me a minute.

I tried desperately to get a good picture of Emma smiling in her pumpkin outfit, sitting with Lola in her ghost costume. The problems with this photo op are as follows: (1) Emma is too fascinated by the shiny camera I'm holding in front of her to smile at it; (2) Emma was cranky; (3) Lola's costume is cuter on her back, but you wanna see her precious face, too! and (4) getting the two of them to sit still. This is the best I could do:

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.