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: