Thursday, January 18, 2018

new year, new specialists

What is it about the first of the year that always seems so harsh? The holidays bring out your fat pants. The winter brings the bitter cold. And for the love, those insurance deductibles start over again! Goodness January, be kind to us.

Eliza has herself quite the line up this month, and surprisingly, we’ve had to add some new specialties to her list. J.B. says we need a Vanderbilt Bingo board to see if we can black out every specialty they offer. Do you think there are prizes?

This week, we headed to Vanderbilt to see the ophthalmologist. Eliza has had some issues with her eyes and there was concern that her optic nerve might be under pressure. Eye issues are pretty common in kids with spina bifida. Because of the hydrocephalus, shunts, and general craziness going on in the center of the brain, sometimes the eyes have their work cut out for them.
As it turns out, Eliza’s optic nerve looks great right now! But one of her eyes specifically is still turning in. Based on how her eyes react to this, she’s not a good candidate for glasses so the team is going to wait and see a few months longer before they start patching or consider a surgical intervention. The hope is that the time period might show it improving on its own! Fingers crossed!

This trip we swung by the murals in Nashville's The Gulch. The kids loved them!

We’re working hard with a Birmingham company to have her fitted for some new orthotics (leg braces). This is a pretty big deal because these braces are significantly lower that her previous set. Whether or not she can actually manage in them is completely up for debate, but our therapist wanted to give it a try. We’re crossing all our fingers that she’s strong enough for the change, and making a billion trips to Birmingham to have them refitted over and over again.

Next week, we're back at Vanderbilt for Eliza's urology surgery. This is a repeat of the one she had done last summer, and we're hoping for another great success! After the surgery, we'll have a follow up in four weeks with retesting done to determine if it took! Fingers crossed!

The following week, we're back at Vanderbilt again (yup, that's three for three!). This time we're being set up to meet with the Nephrology team. Nephrology isn't a specialty that we've ever seen before, but after Eliza's last round of urological testing, there were some big concerns about how well her kidneys were functioning. Urology and Nephrology do work together, but they have pretty distinct purposes. Apparently these results are dramatic enough that our current team wants us to consult with this other group and work on some more things to preserve her organ function. Admittedly, this makes us pretty nervous. We aren't totally sure how bad things are or what Nephrology will want to do. We're definitely anxious to meet with the new folks and see where we stand. 

But Eliza doesn't even notice all the craziness, thankfully. She is just a playful, fun loving toddler, enjoying everything in life. Recently her vocabulary has really taken off, and I think it surprises some people! Looks like a one year old and talks like a three or four year old, ha! 
We are eyeballs deep in Disney princesses and taken over by Frozen fever. Life with girls!

So the plan is to coast on through all these procedures and appointments this month without too much drama! If you need us, we'll be singing Let It Go and cheering on the arrival of February!

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