Continuing the Journey

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?