Monday, September 12, 2016

spina bifida clinic - one year check up!

Oh my, has it been a long day! As you guys know, every few months we head up to Vanderbilt Children's to see all of our specialists and get the a-okay with Eliza's ongoing care. 

These days are so so long. But it's great that Spina Bifida Clinic exists so that we can knock out all of these tests and appointments in one trip! So buckle your seatbelts, this update is all things medical-schmedical with Eliza's latest clinic visit.

We started the morning before dawn heading from our hotel to the Vanderbilt imaging area. Eliza had to have a full brain and full spinal MRI. Those are scans that require detailed imaging and take a fair amount of time, so she had to be under anesthesia. Anesthesia means no food or drink beforehand. Not our foodie baby's favorite thing. Thankfully, we got the early morning slot so she only had to be hangry for a few hours. 
By 7:30, she was taken back by the doctors and J.B. were sent out into the main hospital area to wait. My least favorite thing is being away from my gal pal so that was the longest two hours I've sat thru in quite a while. 

She did marvelously in the scans though. Per usual, she just had a bit of trouble coming out of the sedation. They think she has a tendency to wake herself up from it too soon, which leaves her really confused and upset. After walking around the outside gardens at Children's for a bit, we had our sweet girl back.

A quick snack break and we were back inside and headed up to Urology. With spina bifida kiddos, the bladder and bowels are often damaged in terms of function and nerves. Most folks end up having to be cathed every 3-4 hours in order to protect their organs or to simply function discretely in social settings. We're not quite there with Eliza, but still have routine scans to see how things are going. And for the first time, things didn't look very favorable.

Both of Eliza's kidneys showed residual urine that should have been emptying into her bladder. This gave our urologists quite a spook. Perhaps we might be looking at a less than optimal situation. Normally we have these quick scans at each clinic, and then Eliza has a big urology test once a year in which they assess the full function of her urological system. We aren't due for it for another 4 months, but our team decided to bump up the big test to next month. UGH. This mama is on edge, y'all. If the results aren't great, we'll likely be joining the cathing club. All normal spina bifida things, but still a really big deal! I can't even wrap my brain around what that looks like so I'm trying to just take this issue one day at a time!

After urology, we dashed up to Neurosurgery. We were elated to have an appointment with the same neurosurgeon that did Eliza's back closure and VP shunt surgery! We adore Dr. Bonfield and don't usually get to see him in clinic so this appointment was a treat. Even moreso with the results! Eliza's shunt looked beautiful! The chiari in her brain was asymptomatic! And her two spinal cysts had shrunk!! This is super uncommon! High fives all around!

Last, we headed to our official Spina Bifida Clinic. Since we'd seen a few of our docs at special appointments earlier in the day, our clinic visit was a bit shorter than normal. 
Orthopeditics was really pleased!
Physical therapy and occupational therapy were elated with her progress! They were so so impressed with all the things she could do at only 13 months! It was definitely a highlight of the day to see them dote on her and all of her milestones! Put all those hard hours of work right where they belonged - in the win column!

All in all, it was a very long, exhausting day. Our girl was such a dear, despite being constantly poked, prodded and bothered all day. As for the results, things weren't quite as perfect as we'd have liked to have had it. We were cleared for 6 months from all specialties except Urology and Gastrointerology, who we'll now see next month for further testing. 
Daunting, but I know God's got it all in His hands.

I'd also be completely remiss to not mention that we also had a few sweet moments in the day when we got to meet with a couple of other spina bifida families. Social media can be a pain, but it can also connect you to others in a fantastic way! So thankful for these other families that walk the road with us.  

Until next time, clinic friends!

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