Wednesday, February 3, 2016

first SB clinic of twenty-sixteen!

Spina Bifida Clinic again!

Last week, Eliza and I loaded up and headed to the snow-covered streets of Nashville. It was a bit of an adventure navigating the iced over downtown area. 
There were a few scary episodes of skidding around on black ice. And one mom, who shall not be named, that slipped on the ice and fell into a snow covered bush. Never a dull moment, guys.
But we finally made it to our hotel and snuggled up to Downtown Abbey and take out food. 
Okay, so maybe that was just me... Eliza was studying the inside of her eyelids by 8 p.m.. 

We were at Vanderbilt bright and early and started the day in Urology with her typical renal ultrasound. This is a normal clinic scan, as they like the check to see how her kidneys are looking.
After the scan, it was up a few floors to the Spina Bifida clinic. 

And holy crowd Batman! 

I think a combination of the bad weather over the past week and the previous holiday had created a total traffic jam in the clinic. The waiting room was crammed full of families! In a certain sense, it was kind of neat to see all the different kids with spina bifida and how they all interacted separately and together. Kids in wheelchairs, leg braces for days, and shunts as far as the eye could see. A little girl in a standing wheelchair was whizzing around having a field day with the crowd. You could tell that several of these families knew each other from previous clinic visits. And others, like me, were just hoping to get in to see the doctors before any inevitable meltdowns. 
Baby meltdowns, not mom meltdowns, thank you very much.

After a few hours in the waiting room, we finally headed back to the exam rooms. Our visits list this round included neurosurgery, urology, orthopedic surgery, physical therapy, occupational therapy, nutrition, our spina bifida clinic coordinator, and the spina bifida social worker. 

  • Our nutritionist was really pleased with her growth (read: fat rolls and marvelously plump thunder thighs) and encouraged me to get started with some solid foods. I'm hesitant, y'all! 
  •  The spina bifida social worker and I talked at length about what sort of programs could be available to her in Alabama and I got some great information on a few of those!
  • Our sweet urologist was shockingly thrilled, yet again! I wish I had a photo of her face every time she gives us these great results. It's like her eyebrows are just glued in the surprised expression, haha! She's just so taken aback at how absolutely normal Eliza's test results are for her bladder and kidneys. We were cleared once again to treat Eliza like any normal baby and skip out on medication and a catheterizing regiment! Yay!
  • Physical therapy and occupational therapy had a nice long visit with our girl. While we work with two separate therapists at home in Alabama, we haven't seen the Vanderbilt therapy team since Eliza was released from the NICU. They were elated that she's already rolling over and trying to sit up, and very pleased with all of her head and trunk control. I got lots of great tips on new things to try. And I take it as a good sign when the therapists get confused about your kiddo's lesion level because she's doing so well!
  • Ortho was a quick visit this round. Eliza's hip ultrasound from January came back perfect, so they merely commented again that since she looked anatomically awesome in her hips, knees and feet, they wouldn't need to intervene until she was closer to a year and would be fitted with braces to help with standing. 
  • And lastly, our beloved neuro team. Eliza's shunt MRI from last month looked sound, but they did pick up something new on her brain scan. She has developed a cyst (official, super medical name for this is a "syrinx") at the top of her spine. A cyst like this can press against different areas of the spinal cord and cause a decrease in movement to various parts of the body. It seems to have grown a bit since her last scan in September, so the neuro team wanted to take a closer look at it. We've all noticed a decrease in her leg movement over the course of the last few months so the team will be pushing to have new scans done pretty soon. The cyst could be completely assymptomatic, or it could be the reason we're seeing less movement in her legs. It's impossible to know until she has a spinal MRI. To be honest, J.B. and I have mixed feelings about the whole thing. An assymptomatic cyst would mean that she doesn't need to have any major surgeries to correct it. A win, right? Well, yes and no. If the cyst isn't causing the movement issues, that leaves us with no real solution and only more work in therapy to do what we can to salvage her leg strength. I've always been one to see a problem and immediately push for quick resolution. In a situation like this, it sure feels like a lose/lose. Major surgery or no solution/answers. Y'all be praying for us (and Eliza, of course!) as we try to figure out what's happening in the next few weeks!
        UPDATE: Eliza and I will be headed back to Vanderbilt on Monday to have a spinal MRI done for the neuro team. This will be a much longer scan than she's used to so she'll have to be sedated for the procedure. I'll be back with news when we hear something!

All in all, I think the clinic visit was still really positive. The news about the cyst was a bit scary. But we have so much confidence in our wonderful team at Vanderbilt and even more confidence in a wonderfully mighty God!

Eliza handled the day with the greatest of ease and continues to be the most precious baby. She's still making great strides on sitting up and rolling from her back to her belly! With the exception of neuro, all of the specialties cleared us until May!
Take that spina bifida!

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