Sunday, May 14, 2017

gotta update my update...

True story: I've reread my previous post regarding our last spina bifida clinic and how overwhelming the changes all felt. And now I'm thinking, "Gosh, that's cute."

Maybe that's unfair. Honestly, it was overwhelming! But it was only the beginning of a process to figure out what Eliza's urological needs are.   
Its been about six weeks since our clinic day and we have burning up I-65 to Vandy - giving us both good things and hard things to share.

If you recall, our huge setback after Eliza's last clinic visit was that we found out that a. we needed to start a new care program for Eliza and b. we discovered that our insurance policy didn't cover the  supplies in the least. Remember freak out that we would end up living in a box down by the river due to the dang healthcare companies? Ahhh, I do.
Y'all feel free to pick your jaws up off the floor when I share with you that four different SB families from around the country sent us supplies at no cost to us. Not even shipping! Weeks and weeks of supplies were delivered right to our door in the name of solidarity! We were blown away at the thoughtfulness and generosity of other special needs families to make sure Eliza had everything she needed! Then again, why should I be shocked? That's what this amazing community of people does. They take care of one another in the most incredible ways.

Eliza's new regiment wasn't going as well as we'd anticipated. Not only could she not tolerate the medications they needed her on, but within a few days she was sick with an infection, and after completing a round of antibiotics, she was immediately sick again. Vandy was worried. I was worried. This definitely wasn't improvement.  Our follow up dates were bumped up and we were told to prepare for a dramatic surgery that would again change her daily care. Roller coaster of crazy!

Our doctor was patient and had Eliza retested before rushing to anything.  Her follow up results weren't quite as dismal as everyone expected. Yay? Ha. It meant that we have a little bit of time to try some milder  options before rushing to major surgery. Our urologist is going to try two less evasive procedures in hopes that they'll help temporarily. Those are officially on the docket ASAP.

Those two milder surgeries only have about a 40% success rate. Each. Both of them being successful? Maybe 15-20%.
Whomp whomp. Excellent lottery odds, not so hot surgical odds.

So after all this back and forth, we're finally set up to head back up to Vandy this week for the dual procedure. We're hopeful that it'll work but know we're in good hands regardless. I love how these teams keeps thinking and working for the best solutions for my girl, however crazy her mama is.
I'll keep you posted!

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But in the meantime, how about some fun news!

One of those many trips to Vanderbilt in the last few weeks was actually to their fantastic physical therapy department. Eliza was being evaluated for a new piece of equipment called a dynamic stander. The gist of it? She's standing up in a wheelchair!

The benefit being that her legs get to bear weight and hopefully strengthen, while she's also able to be-bop around like always. Its basically a fantastic whole body work out for her!

Of course, our wheelie pro took to it like a fish in water, and cried when her evaluation was over. The therapists are putting in orders of medical necessity and we are currently crossing all our fingers and toes that the insurance company will approve it for us. If so, we should have it in a few months.

She's the cutest!!

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