Friday, October 30, 2015

spina bifida awareness: q&a part two

Hi! Welcome back for part deaux of my spina bifida Q&A!
{go HERE for part one!}

In honor of October being Spina Bifida Awareness month, I'm answering a few of my most asked questions on the blog. So jump right in!

What does Eliza's care look like? 
Well, right now it looks the exact same as any two month old baby's care! Same dirty diapers. Same snoozing naps. Same tiny perfect little face. Same screaming in the car seat.  
Oh wait, that screaming isn't everyone? Well shucks...
But seriously, its a great thing! All of her specialists are very happy with her as is and she doesn't require any additional intervention at the moment. Our next spina bifida clinic is in January, so we'll have new orders then if they'd like anything to change. I do know that we're expecting to start her physical therapy soon. That is something that she'll likely do continually over the course of her life to help with strength and control.

Will Eliza have to have any more procedures during her lifetime?

 Oh, I'm sure. And the potential list is quite long. Boo.

There are a lot of spinal surgeries that are needed as kids with SB grow.
Plus, with her shunt, we're likely to see quite a few shunt revisions over the years (we were told that she likely won't make it to her first birthday before she has a shunt malfunction). The spine and her shunt are biggies, but they are also just two things on the long spina bifida list that will bum us out on occasion. There are a lot of other things that aren't even on our radar yet.
The main thing I've realized is that we really have very little control over any of it. Her shunt could fail tomorrow and we'll be in the hospital immediately. Or she might have a leg or spine or foot surgery that's planned months in advance. Who knows?
So we just take it one day at a time. 

How hard is it to be a SB mom? 

Well, I've only been at this for a few months now, but I feel like I can honestly answer that it's really no big deal. For every terrible-horrible-I-hate-spina-bifida day, there are so so many wonderful days of just being joyful over my sweet gal and all that she can do. Most of the time, I don't even think about her having spina bifida.
Probably because her cuteness is so stinking distracting!

Does Jake understand her SB? 

When we came home from the hospital, we were obviously very delicate with Eliza because she was still very much healing from both her shunt surgery and her back closure surgery. Jake didn't get to hold or even touch her much for awhile. He has also seen all the stitches and scars on her, which he refers to those as her "owies". But as she healed, he's gotten to play with her and hold her more and more. Nowadays, she's not physically different from any other baby so we don't treat her any differently. 
So does he get SB? Not one bit. He has no idea what spina bifida is and I seriously doubt we'll have that conversation with him any time soon. It's probably not too complicated for him considering the kid can explain the water cycle, an F5 tornado and why a beaver has orange teeth. But he also has a very tender heart. We don't want him to worry about her or feel like she's too different from other kids or babies. He's just too young for that.
Also, right now, its easier this way. Since Eliza is his first sibling and really the first baby that he's been around, the way everything has gone is totally normal to him. We joke that he truly thinks that everyone goes to the hospital for several weeks to bring home a baby.
He may or may not have told me to go back last week and bring him a baby boy too. Umm, no, child. 
And the fact that we go to Vanderbilt so often is also normal to him. Maybe when he's older and can formulate his own questions, we'll start to get into it.

I really hope that this October has taught you guys a little bit about spina bifida!
Thanks for your questions and thanks for hanging with me!

No comments:

Post a Comment