Wacky Wednesday...

A lot of bloggers do "Wordless Wednesday" posts, but if you ever read this blog you know "wordless" just isn't possible for me. So I thought I would start "Wacky Wednesday." My goofy kids provide plenty of opportunities for wacky pics.

So for the first...
...we have Police Officer Molly and Fire Chief Carson. Heck, in this economy, if the City would hire 'em, I might have to sign 'em up!

Have a great Wednesday!

And the Testing Just Goes On and On...

Last Tuesday, Molly had an appointment for her renal ultrasound. This was the second of four ordered tests for the Spina Bifida Clinic (MRI, renal ultrasound, functional urodynamic study, and voiding cystourethrogram). I scheduled them in the order listed because the last two required her bladder to be straight-cath'd and I knew that was going to be BAD!

Tuesday, before her renal ultrasound appointment, Molly and I had a date...
...with a McDonald's cheeseburger...
...and Daddy! Molly was super excited to get Mommy and Daddy all to herself! After lunch, we headed to the hospital for the ultrasound. She was supposed to arrive with a full bladder and, boy, did she ever. She was begging to go potty as soon as we arrived in the waiting room. The ultrasound tech needed to get some of her scan done with her bladder full...
...and Molly was not pleased. In fact, when we laid her on the stretcher, she started wailing! Poor thing, she didn't know what was coming. After she was allowed to empty her bladder...
...she actually started to enjoy herself. Hey, ultrasounds don't exactly hurt, ya know! After the scan was complete, Molly decided to share the snack I had brought...
...with Wa-Wa! Uhhhh, Molly, baby dolls don't typically snack on animal crackers.
But goofy girls do!! Two tests down, two to go.

Yesterday, Molly had the functional urodynamic study (FUDS) and voiding cystourethrogram (VCUG). I was DREADING this day...since both of these tests required her to have her bladder straight-cath'd. Nobody enjoys that, but especially not a child who doesn't speak the language and is scared to death of all things medical. Well, I prepared myself for the worst...and she did amazingly well! She yelled during the straight-cath'g but never moved her legs or tried to interfere at all with the process. She was a dream patient! What a brave little girl.

I haven't gotten any of the urinary testing results yet, except to be told that her kidneys look great and that she leaves a bit of residual urine in her bladder after voiding. (Of course, we all probably have a bit of residual, so that might not be a big deal.)

The week after Molly's MRI, as I chewed on the things I had been told, one thing kept nagging at me...the fact that the Radiologist who gave us the results prepped everything she told us with, "I'm just the Fellow." Just the Fellow...hmmm. Since she was careful to say that, it seemed to me that I should seek a second opinion. So while I was at work last week in the MRI department, I sought out the Attending Radiologist. I apologized for bothering him, but asked if he would mind looking at Molly's scan. He was happy to help.

His reading of Molly's MRI was MUCH more positive than the original read. The differences? The fact that her spine is split at the end is a much better finding than the typical case of diastematomyelia, where the spine splits and then rejoins. He said her spine is the most benign case of diastematomyelia he has ever seen...and that, if she were going to have symptoms from her spinal anatomy, she would have had them already. (And she has no symptoms at all...so, yeah!)

He also thought that the mass/cyst/tumor on her spine is probably neither a mass, a cyst, nor a tumor. He thinks that it is an anterior meningocele. At that portion of her spine, Molly has abnormal vertebral anatomy. So he thinks that when her spine was pushed back inside her body (during the surgery in China), that it went through the abnormal vertebrae and is now pushing inward. Is this a problem? Maybe not, if she never gets symptoms from it. He suggested we just do MRIs every six months and monitor it closely.

He also said that the combination of her completely straight spine (since severe scoliosis is the most common issue suffered in kids with diastematomyelia) and the lack of typical spina bifida changes in her brain make him think she may not even have spina bifida at all. WHAT?!?!?

While this second opinion was totally off the record, I have to admit I'm feeling better already. Gotta admit, I'm actually looking FORWARD to that Spina Bifida Clinic appointment now!

The Littles Share a "First"...

...their first visit to an amusement park!

Every September, Children's Hospital rents out Coney Island (not the real one, a small local copy of it) for the day and calls it Employee Appreciation Day. Every employee gets four free tickets, which includes a free lunch. Since my sister Michelle, my sister Nikki, Nikki's husband Brandon, and I all work at this same hospital, we had 16 tickets between us. Nikki and Brandon weren't planning to go, so they donated their eight tickets to Michelle...and Michelle created a party! We had quite a crowd of excited kiddos heading to Coney Island two Saturdays ago.

Since the lunch wasn't to be served until 1:30PM, we stopped at McDonald's a little before 11AM for a quick snack on the way...
...and Carson and Molly loved their chocolate milk and hash browns! Here we are, an hour later...
...getting settled in the double stroller in the parking lot. Meggie was such a good sport...her same-aged cousins (Brooke and Tara) were there, but she chose to stay with me most of the day and help out with the kids. (Daddy chose not to go.) As we hooked up with Aunt Michelle -- who had brought Brooke and Tara (her daughters), one of their (male) friends, Talia (daughter of one of Michelle's friends), and Sophia (of headbutt-me-and-injure-my-spine fame) -- the kids spotted a ride they just HAD to try......the helicopters! Molly started out quite happy -- after all, she was sitting next to her beloved big brother -- but that didn't last...
...as she decided at the last minute this wasn't for her. Too late, Baby Girl. She ended up screaming and crying through the whole ride. Awwww...we decided after that that maybe Little Man and Baby Girl aren't cut out for the same kinds of rides. Here Carson and Talia...
...were excitedly watching through the fence at their next stop, the big airplanes.
Look how happy he is! It's funny, but the little guy in the plane with him is Hunter, my cousin Jenny's son. He is significantly younger than Carson but looks BORED on that ride! LOL! We decided that almost-5-year-old Molly and almost-2-year-old Sophia were probably the best ride partners...
...and we were right! They rode the smaller airplanes (that don't go up in the air) and loved it! As the lunch hour neared, Aunt Michelle had the excellent idea to head to the picnic area to grab a table. They served the lunch at many stations and we ended up being first in line at one of them. Of course, we had to stand in the direct sun for over 30 minutes to keep that spot...but, hey, we got a free lunch!

We eventually found the merry-go-round...
...and while they looked happy in that pic, let me tell ya they were petrified up on that horse. Since Daddy hadn't come and Meggie took a short break from us to hang with the teenagers, I had to put them on that horse together. Unfortunately (for me), it was one of those move-up-and-down horses. So while Carson and Molly yelled and hollered in my ear, I had a bear hug around them both and was squatting down, then tippy-toeing up, then squatting down, then tippy-toeing up (repeat for the entirety of the ride) to keep them from falling as this horse moved. I'm sure I looked a sight...and I'm not even sure the Littles enjoyed the ride, to tell you the truth!!

We actually had great weather that day, but it was a bit hot being pretty consistently in the sun. The kids were thrilled to find this...
...water misting awning! (Not sure of it's official title, but that's what I called it.) They kept running back and forth, eventually getting soaked...
...which ended up being a refreshing break! (If I wasn't so ridiculously anal retentive about my hair, I would have joined them...) Right by the water misting awning, there was a small town set up and the kids had fun wandering in and out of the miniature buildings. Aunt Michelle and I tried to get them together for a group shot at this...
...lemonade stand, but as you can see it isn't the best picture in the world. (What a motley crew we had with us, huh?!) Having rode many rides throughout the day, the kids wanted to go back where they started...
...and this time Molly was a bit more comfortable riding the helicopters. (Plus, she looked good with her shades on!) We discovered pretty early in the day that Carson is an adrenaline junkie -- begging us to try the really big rides -- so he and Meggie...
...decided to try out a really big ride together. While Molly and I waited for them, she decided that Divas need to hide from paparazzi with large sunglasses...
...and if those don't help, then this...
...will do the trick. Goofy girl! Meggie, Brooke, Carson, and Talia got in a long line...
...to ride the one ride Carson begged for all day. What was it??
The Ferris Wheel!! I was honestly a bit shocked that Meggie was willing...she's so NOT an adrenaline junkie...but I appreciated her willingness to take him on the ride for me. This picture shows them after they got in their seat...
...how cute! However, when the ride started moving as they loaded more seats...
...Meggie decided acting brave wasn't working. The freak out has begun! Molly and I stayed down on the ground...
...and Molly was clearly worried about Meggie and Carson going up so high in the air! It was hard to get action shots as the ride went around, but I managed a couple...
...that clearly showed Meggie suffering while Carson had a blast! As soon as they got off, he came running over to me begging to ride it again. Since the line had gotten significantly longer...and since Meggie had had enough of that ride...the answer had to be no. Since Molly had been so patient while they rode this big scary ride, it was only fair that the 'fraidy-cats in our crowd got their turn.
It cracked me up how Sophia, Hunter, and Molly were fine, but Carson kept leaning forward, hoping it would make this turtle ride go faster! We headed back to the big airplanes and this time Molly wanted to try them. Literally, as they opened the gate to let the kids get on, Molly started crying...
...so we pulled her out of line and headed to the shade to wait for Carson to finish the ride. (If you click on that picture, you will be able to see that the front of her shirt is dotted with teardrops. She was sobbing something awful! We never did figure out why and it stopped as quickly as it started.)

There was another ride that Carson saw and kept begging us to ride. However, it was obviously a fast-moving ride -- Meggie wanted nothing to do with it and I was afraid my newly fused spine couldn't take all that motion -- so we kept saying no. Eventually, he wore Aunt Michelle down and she offered to take Carson and Talia. They waited in a (thankfully) quick-moving line...
...and I thought I would try to get a shot of the ride in action...
...but it was so blurry! Carson was super excited...
...and that shot was the only one I could get due to the aforementioned blurriness. (They were just loading up the cars when I took that one.) This odd habit...
...of shoving her blanket into her mouth is a sure sign that Sophia needs a nap. Since Aunt Michelle was riding that wild ride with Carson and Talia, Meggie got Sophia settled in her stroller and she fell right asleep! (You're welcome, Aunt Michelle...)

Our last stop was a ride I stupidly thought would be fine for us all to ride. Cousin Jenny sat this one out to stay with Sophia while she napped and we all climbed on. It ended up being quite a wild ride and, since I was seated with Molly, I got my due punishment. As she screamed (real terror, mind you) she decided the best way to deal with her fears was to bite ME! She clamped down hard on my thumb!! Ouch!

We decided that five hours of rides and sunshine was enough and headed to the minivan to go home. We hadn't even driven the five minutes to the highway and Meggie turned around to see this...
...they were OUT! We were so glad we went (thanks, Aunt Michelle, for talking us into it) and will absolutely go back next year. However, I think from now on I'll pack our lunches...standing in the sun to get a hot dog and some baked beans just isn't worth it!

Surprise, Surprise...

Last Wednesday, when I picked Molly up from preschool, Miss Jenny (her teacher) had a quick chat with me about how Molly is struggling in Circle Time and how she wanted to move her down to the Pre-3 class just for that part of the day. Apparently, during Circle Time, Molly gets frustrated -- perhaps that she can't join in due to the language barrier -- and ends up tossing off her shoes and socks in protest. (What?! She NEVER does that at home!) As I watch Molly in our home, I wonder how moving a smart kiddo like this into a lower class level is appropriate or helpful, but I told Miss Jenny I trusted whatever she felt was best. Miss Jenny apparently felt that the Pre-3 Circle Time is shorter and moves slower, which would help Molly catch onto the concepts quicker and not get bored. OK...

On Friday, Miss Jenny wrote this on Molly's daily report:

Okay, wow!! The last two days she has been participating during Circle Time. :) She has been joining songs and told me yesterday, "Lunch helper" for her job. She's also really joining in with the other students and playing with them more. So, I'm going to hold off until next week to decide if she will be more comfortable in the other classroom for our morning circle. Thanks. :) Ms. Jenny

Way to go, Baby Girl! Keep challenging those teachers and keeping 'em on their toes!!

On another unrelated (but still surprising) note, Carson has been amazing us this year in soccer. Has he been kicking harder or scoring more? No...he's an awesome GOALIE!! You know, the kid who was put into soccer because it is a legs-only sport and his arms are so weak? Yeah, well, he is (again) defying all odds and has super fast reflexes in the goalie box...and last night (in a game I had to miss because I had to go back into my office at the College after my Statistics class) he CAUGHT a goal attempt and threw it back into play OVER THE OTHER KIDS' HEADS! Are you kidding me?!

Way to go, Little Man! Keep proving those doctors wrong!! At this rate, maybe he WILL be playing Little League baseball in the spring...

As we struggle as a family to adjust to our newly expanded size (where did all this laundry come from and who is eating all our food?!?!), we feel like we've at least gotten into a good morning routine.

Since my schedule is different every day, the Littles are never quite sure who will be dropping them off at school. (At least Meggie has her own car and has a consistent drive-herself-to-school routine she can count on!) On the days I have to work early...like when I teach clinicals on Thursdays and Fridays and have to be at the hospital at 6:30AM...then it's up to Daddy to get the Littles dressed and ready.

While Carson is happy with a simple t-shirt and a pair of shorts, the Mini Diva is a BIT more demanding in the fashion department. For example, last Friday, Daddy sent her to school like this...
...which I honestly feel is fine for preschool (although her double thumbs-down begs to differ). When the girls and I were going to run errands Friday evening, Meggie was NOT having her baby sister out in the world dressed like a BOY! (How is that "dressed like a BOY"? She has Tinkerbell on her t-shirt!)
Clearly the double thumbs-up is a sure sign that the Mini Diva much preferred her snazzy new look.
Oh, what kind of monster is Meggie trying to create?!?! (Obviously, a fashionable one...)

Look, Folks, They're Playing Together!

When Molly first arrived, we had to make a rule that Carson plays only with Carson's toys and Molly plays only with Molly's toys. As she learns the household rules and Carson lessens up on his insane jealousy of Molly, we have been able to relax that a bit. Gotta admit, it is so cute when they play together. Even with the language barrier, they have fun...and it is becoming more and more rare that we have to intervene and break up a disagreement.

Daddy took a few pictures last week when he found...
...a couple of superheros. (Uhhh, Molly...you're supposed to look mean and serious when you're being a superhero!)
What a cool action shot! Carson LOVES running the length of the deck and jumping out into the grass. (Boys make no sense to me...) Looks like Molly...
...wants Carson to come out of the yard and meet her on the deck.
What are they up to?? Is she challenging him to a superhero duel??
Nahhhh...
...they're just getting ready to run across the deck and jump again. Hey, while their games make little sense to me, if they are playing nicely and keeping each other company...who am I to complain?!

A Day of Medical Appointments...

Tuesday was the day...the beginning of a long string of doctor's appointments for Miss Molly as we set out to determine the extent of her spina bifida and what services and/or surgeries she needs, if any.

Before the MRI on Tuesday, though, we started out with her first visit to our new pediatrician...
...and she was NOT pleased! Carson was a trouper, willing to go first...
...to show Molly that it was no big deal...
...but she wasn't buying it! Seeing Molly begin to cry in that picture above, Carson decided she needed a bit of his calming influence...
...so as he meditated (chanting "Ohmmmm, ohmmmm" over and over), she started giggling...
...and after that face, he had her cracking up! (Way to go, Carson!) After the medical assistant was finished with her part, she handed me two hospital gowns and asked me to put them on the kids. Carson was insulted: "I'm not wearing a DRESS!" (Daddy would have been so proud!) The medical assistant told him it was a Superman cape and left the room. He wasn't fooled, but he was at least willing to wear it. Molly got very tearful as I helped her put on the gown...
...but Carson's Superman impression got her right back to her giggly place! When Carson started acting like a monster...
...I was so glad the doctor came into the room. (Putting two rowdy kids in a small exam room with no toys is really just asking for trouble.) They both did great with the visit. Carson was, of course, fixated on the possibility of needing a shot. After the doctor reviewed his immunization record, Carson was thrilled to find out all he needed was the flu vaccine...and he could have the nasal spray version. Molly also got off with only needing the FluMist, but she screamed her head off while we gave it and fought like a madwoman. Honestly, probably would have been easier to just give her the flu shot! Molly may need shots in the near future, but first the doctor ordered blood tests to draw titer levels. One more shot of Carson, The Clown...
...and that visit was over. Whew! What could have been a disastrous morning ended up being quite pleasant.

Since Molly had to be NPO after 6:30AM for her afternoon general anesthesia, Daddy got up early and made a big breakfast for the Littles. (Meggie was NOT getting up early to eat breakfast!) After the pediatrician visit, Daddy stayed home with Molly (he worked a half day and grabbed lunch in his truck on the way home) and I took Carson out to lunch before taking him to afternoon Kindergarten. We were doing our best to keep food out of Molly's vision so she wouldn't suffer as much with her eating restrictions. Interestingly, food was a non-issue for her. She ate some Jello because we offered it around noon (she could have clear liquids until 12:30) and never whined or begged for food at all. Shocking, considering how much this girl typically eats!

When we arrived at Children's Hospital and took our seats in the Radiology waiting area...
...Molly was quite enjoying herself, with no idea of what was in store for the rest of her day. Since I work in the MRI department at Children's Hospital, I had a real sense of calm about this procedure. After all, I knew exactly what was going to happen, how long it would take, and who would be taking care of her.

My co-workers arranged for a Chinese interpreter for the workup, but we ended up sending her away quite quickly since Molly did amazingly well. She wasn't afraid of the nurses and cooperated beautifully with everything they needed to do. (Actually, Molly seemed more bothered by the presence of the interpreter than anything else!) They put her under the general anesthesia with us in the induction room, then we headed to the cafeteria to have a snack and wait.

A typical brain-and-total-spine MRI is around 90 minutes. We allowed that much time and tried to be patient...but as we headed to the two hour mark, I started getting nervous. I called back to the Radiology PACU (hey, I know the number since I work there!) and was told they still had about a half hour to go. As my heart dropped into my stomach, I tried to maintain a calm demeanor for Daddy's sake. After all, I know what an extremely lengthy MRI means: they found things on her scan that they weren't expecting.

We were finally able to go to the PACU and see Molly...
...and she was sawing logs on that stretcher!! She started to move a bit...
...but it was just to reposition so she could suck on her fingers! We finally bugged her enough that she started to wake up. When Carole (our wonderful nurse) offered to let me hold her...
...I jumped at the chance to snuggle my groggy Baby Girl. Molly, however...
...didn't want to snuggle for long. I just love watching kids wake from anesthesia...they are hysterical! Molly wouldn't open her eyes for the graham crackers and water we were offering, but got very interested...
...when Carole offered her the adorable gift she had bought for her. (No, all the nurses in Radiology don't purchase gifts for their patients. Carole just wanted to give Molly a "Welcome Home" gift and saw this as a great opportunity to do so.) It was a little blue purse with two stuffed kittens in it. She instantly LOVED it and wouldn't put it down!
OK, so she put it down to drink her bottled water, but the purse was being held tightly between her legs in that picture. After her IV was out and she had eaten a bunch of graham crackers...
...we took our drunk little patient into a private room to wait to speak to the Radiologist. Being a nurse in MRI, I got many clues in PACU that her MRI did not give all good news. First of all, she got IV contrast. IV contrast is only ordered if a mass is seen. Not good. Also, the Radiologist wanted to talk to us. While it could have just been a courtesy since I work in the department, I had a sick feeling it was more than that. We ended up waiting about 90 minutes for the Radiologist to be available.

It took me a few days to post this because, first off, we wanted to tell our parents (Molly's grandparents) these results before I shared them with my blogging public. And, secondly, I had to process in my head just what it all means.

So here's what they found. Molly does have a mass on her spine. The contrast study that was done seems to indicate this mass is just a cyst, not a tumor. OK, we can deal with that. But this is where it got really weird. Molly has a rare condition called diastematomyelia. In regular people terms, her spine splits in the lower lumbosacral area...so it appears she has two spines at the bottom. Based on those findings, the Radiologist was shocked that she is potty trained and can walk. Apparently, at least from this Radiologist's point of view, Molly should be incontinent of urine and paralyzed from the waist down. Yikes. The good news, though, was that her brain looks great. In fact, the Radiologist said she didn't even see the changes that are often typical in spina bifida patients. I could have told her that...this kid is amazingly smart!

So what does that mean to us? Well, we don't know yet. I must admit I struggled for a few days with what we were told. Diastematomyelia is so rare that I'm having trouble finding a lot of information on it. I'm not even sure what the prognosis is. On one website, I read that she will most likely progress to paraplegia and total bladder incontinence. On another website, I found that she may never become symptomatic and, if she does, minor surgery will restore her to her symptom-free self.

At this point, worry is unnecessary. After all, Molly is doing amazingly well. Not only does she walk, she runs, skips, jumps, climbs, spins, takes ballet...and doesn't even have a limp! Doesn't seem like paraplegia is in her immediate future anyway. Not only is she potty trained, but she hasn't had a single accident since we've had her. She will tell us when she has to go, so it's not like we're anticipating her bladder needs. (We have to send Carson on a schedule 'cause that boy would sooner play all day and NEVER go to the bathroom.)

The MRI -- and the upcoming urinary tests she will be having in the next two weeks -- were ordered to give the Spina Bifida Clinic at Children's Hospital a baseline picture of her. We don't see them until October 19th, so I guess we'll just wait until then to see what they think and where we go from here.

Until then...
...how could we possibly look at that adorable face and do anything but smile?