Wednesday, September 30, 2015

Our first Spina Bifida Clinic

Apparently having a newborn and a preschooler means that sometimes you slack on the posts for a couple weeks. Whoops! I'd promise that it won't happen again, but well, that probably isn't true... 

So the latest! Eliza had her very first spina bifida clinic two weeks ago at Vanderbilt. The concept is pretty genius because it means that the coordinators take all the different specialties that need to see your kiddo and book them on the same day. So instead of having to drive up there what would likely be several random days a month for various tests or appointments, our beloved coordinator Rose talks to all of our docs and whips them into shape (nicely, of course, because that's what beloved people do). So spina bifida clinic means we spend one or two consecutive days at Vanderbilt, once every three months.

 We arrive in the testing and imaging area first for whatever tests have been recommended. At best, that's just the always requested brain MRI for neurology to check on her shunt. At worst, every specialty has some fancy pants procedure. 

After all the different tests, we head upstairs to the actual spina bifida clinic floor. Much like any specialty's office, you wait to be called back, have your vitals taken and then are escorted to an exam room. On the door, they taps a sheet of paper with Eliza's name and all of her specialties listed. One by one, they all make their rounds. There's no timetable and no specific order that I can figure out. You just hang out in your tiny jail cell exam room until everyone has been by. On their way out, the doctors sign off on the page on the door. Next to their name they fill in when they need to see us next (6 weeks, 3 months, 6 months, ect) and what tests they want done before the next appointment. 

All in all, it's really efficient in the long term. One drive up. One or two days at the hospital. All the doctors and surgeons in one place, working together. But in the short term, it's the longest day(s) ever. 

This last visit was likely our shortest clinic ever. Since Eliza is so little still, we got to skip out on a couple of docs. And we had minimal resting beforehand. But even with a short day, J.B. and I decided that a hotel stay needs to be involved. Toss four hours in the car on top of all of this medical nonsense and you have three very cranky, overly exhausted people.

So how did it go?? Get to the good stuff already, right? 

We had a fabulous appointment day! Eliza got the happy nod of approval from every specialty on the list. The highlights were definitely:
a. looking at the "before" and "after" shunt surgery brain scans with neuro. It was amazing how well her shunt was working and the different it made on the pressure on her brain! 
And b. Meeting with her ortho doc for the first time. He first talked about how great her legs were, which was confusing to us. But he then went on to explain that a lot of SB kiddos are born with lower limb deformities like clubbed feet, dislocated hips, etc, that needed castings, braces and even surgeries to correct within the first year of life. Eliza has perfect little legs, just ready for wiggling. Which she was promptly doing during the exam and led him into a discussion about she was already performing on a much higher level than they would normally expect. Basically they'd have to toss the textbook put the window and just see what she could do over time. Sounds good to us! 

Overall, it was a day full of good news. Each specialty released us for the maximum amount of time (3 months)!  

That's right guys - no appointments for three months! If you're looking for the Wilders, we'll be the ones doing the happy dance until December - Eliza included!!

(Tuckered out after a day at the Botanical Gardens) 

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