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.