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.