Tuesday, September 13, 2016

Ronald McDonald House {giving back one year later}

For Eliza's birthday, we decided to nix the presents. Let's face it, girlfriend did not need any more toys.  Instead, we thought her birthday might be a great opportunity to give back! 

So let me give you a little background...

Almost a year ago, J.B. and I lived in the Ronald McDonald House of Nashville while Eliza was in the Vanderbilt NICU. You see, once I was discharged from Vanderbilt myself, there we were in downtown Nashville. Our newborn was undergoing some massive surgeries and healing and nearby hotels running an easy $300 a night. That's where the RMDH came in.

Ronald McDonald Houses exist near children's hospitals all over the country. They provide a place for families to stay while their children are in the hospital, regardless of whether or not they can pay anything. You're given a private room and bathroom that reminds me of a college dorm. Every house has multiple kitchens, living areas, children's play rooms, laundry facilities, and computer access. Most nights, a volunteer group of some sort (companies, churches, etc) provides dinner for all the families in the house. 

Often times, J.B. and I would come dragging in the RMDH around 11pm to find leftovers waiting for us in the kitchen. After a warm meal, we'd crash and get up at 5am the next morning and, after grabbing some snacks in the kitchen, we'd head back to the hospital. The ease of the house is a perfect contrast to the worries and energy parents are leaving within the walls of the hospital. 

(August 2015)

Every family that has stayed at a RMDH  knows the incredible value of what they do there. Having your sweet baby in the hospital is gut wrenching enough, but Ronald McDonald House Charities does everything they can to keep families together without worry. 

This place has been such a wonderful part of Eliza's story, and it endlessly blesses so many other families every single day! So for her birthday, we decided to collect donations for the RMDH in Eliza's honor.  

With the help of my brother (my craftsman!), I created this box to sit out at her birthday party:

We shared our plan with family and friends and were so blown away by the excitement of them all! Even people that hadn't met Eliza asked if they could contribute!

Yesterday, during a short break from her spina bifida clinic, we dashed the two blocks over to the RMDH of Nashville. We were greeted immediately by the incredibly warm staff and even the house therapy dog, Sadie! She showered Eliza with kisses while J.B. and I were able to drop off our donation. A donation that would provide a family with a place to stay for 53 nights!! 53!!!

{September 2016}

I love this place.
I love what they stand for and what the do, both in the small moments and in the big ones! Ronald McDonald House Charities, you are amazing!

To find your local Ronald McDonald House and donate to this incredible cause, visit www.rmhc.org.

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!

Thursday, September 1, 2016

all about that brace!

You might have noticed already, but there's kind of a big deal happening around here... 

No, not another kid. 
No, not another pet. 
No one won the lottery, a new car or the Publisher's Clearing House. 

Please say hi to Eliza's very first set of HKAFO braces and first gait trainer! 

HKAFO stands for Hip Knee Ankle Foot Orthotic, representing the areas of her body that this brace is securing. It's essentially the full monty of orthotic bracing. 

So what's up with these? What do they do? How does it help? How did we get such a contraption? What does Eliza think of them? All questions we've been asked on the regular over the past month or so. Here's the tale... 

The goal for most spina bifida kids is to do your absolute best to keep them as close to normal physical milestones as possible. That can be rolling over, sitting up, walking, etc. Around a year, most babies are learning to stand and walk (typical age is 10-18 months), but with the limited gross motor skills, that's not often in the works for a child with spina bifida. 
The normal coarse of action is typically to start with some small foot braces around 12 months and also order a device called a stander to get kids up. A stander does exactly what it sounds like. You stick Johnny in it and he is supported enough to stand up. Over time, the lower body muscles that do work are strengthened, the kiddo becomes a bit more communicative, and there's typically a better understand of exactly how much function a child has. After that, PT will often start working on forms of mobility if they are possible. 

Well, we aren't normal. Surprise, surprise! While our team at Vanderbilt, our Early Intervention physical therapist, and our aquatic therapist were all ready to move forward with the above plan, there was one small voice that brought up another idea. That voice belong to our private physical therapist, Stephanie. 

Let me just say, sometimes having a bunch of therapists is really neat. They all have various approaches and they all teach you something completely different. But sometimes, its a total pain in the derrière. They all have various approaches and they all want you to do something completely different... Oy! It can be hard to navigate as a parent! This was where J.B. and I landed when Stephanie said that she'd really like to get Eliza in a pair of HKAFO braces and teach her to walk. 

Can I be honest? I thought the idea was a bit ridiculous. Of course my daughter with T12 level spina bifida wouldn't be doing anything remotely close to walking any time soon, if ever. I'm all about some positivity, but puh-lease lady. But... I like the idea of getting her up and standing. And I'd also heard horror stories about it taking months and months to get a stander device approved by insurance. The idea of custom made HKAFOs seemed a bit more convenient. We could work on standing in a variety of places! And they'd be built in a matter of a few weeks. 

My other therapists didn't like it. That's probably putting it mildly... They said she wouldn't tolerate them. That it would be too much for her to really handle at this age. That we'd be spending a lot of money for nothing.  But the more I mulled the two paths over, the more confident I felt about the HKAFOs. So we went for it.

First, Eliza was casted for her braces. The fit has to be perfect or else she'd get blisters, bruises, and pressure sores. The orthodist measured her and then measured her and then measured her. Finally he casted each of her legs in a similar manner to the way you'd cast a broken leg. Once dried, the tiny casts were cut off and were given to the builder with all of her measurements. 

Three weeks later, the day before her first birthday, we got the call that her braces were ready and to come on down for our first fitting! The fitting appointment took about two hours, but in the end, they did such a fabulous that we haven't needed to go back for any tweaking yet. 

They seem complicated, but are less than intimidating once you get the lay of the land. She has three velcro straps that go across each leg, and a waist strap around the belly. There is a locking device at both the hip and the knee that can remain in place for full standing support, or be unlocked to bend either joint.

After receiving the braces, I called our PT Stephanie and we got started with trying to teach Eliza what to do. Initially, it was just all about getting her in the braces and standing up. She'd stand at the coffee table, at the sofa, or over an ottoman. Basically anywhere possible to get here in an upright position and try to teach her legs to bear weight. 
She took to it marvelously! As long as she had some toys to play with, Eliza would stand for days!! That, in and of itself, was pretty awesome.

After her first PT appointment, Stephanie saw that Eliza was perfectly fine hanging out in her new braces. To my complete surprise, she brought out a tiny gait trainer. That's the itty bitty walker contraption you're seeing in the photos. It's meant to be pulled with you as you walk. Stephanie said, "Here, you can borrow this one until you get your own ordered. Let's get the ball rolling. I plan to have her walking with these before she's two."

Huh? What? Do I seriously pay this insane woman? 
My T12 spina bifida kid? Walking at all? Before she's even two?? 
Really though. Who ordered the extra side of crazy?? 

That appointment, Stephanie showed Eliza how to stand with the gait trainer, to put her hands down on the handle for support and balance. And just like that, Eliza caught on. 

Two days later, Stephanie unlocked Eliza's hip support and taught her how to use the muscles in her belly and bottom to straighten her body. And just like that, Eliza caught on. You can literally tell my twelve month old to "Tuck your booty" and she'll stand up straight in her braces.
To be clear, this is something that a month earlier, another therapist had told me that Eliza would never physically be able to do - stand up straight with her hips unlocked. 

Five days later, Stephanie said, "Well, she's got the goods. Let's learn to walk." I watched as she took Eliza and her gait trainer to the middle of a large room, unlocked her hips, and started showing her how to shift weight from one leg to the other. As she leaned on one leg, she was to move the other forward for a step, then shift her weight and do the same thing on the other side. 

And just like that, Eliza caught on.

A week later, Eliza was going down a hallway twenty feet long, playing with some toys and walking back again. All with Stephanie trudging right along behind her, hands on Eliza's waist to help remind her to shift her weight. Pushing the gait trainer? Standing up tall? The steps? They were all her own.
The line I heard last week of "we should have her walking solo by the time she's two" has now been altered to "we should have her walking solo within a couple months". Even our limitless physical therapist is shocked at how quickly she's catching on to everything. So exciting!!

Check out Instagram for a full video of Eliza doing her thing!

To be fair, its a lot to learn for such a wee tiny gal. Push the gait trainer. Shift the weight. Move the other leg. Step. Go again. Eliza definitely has her work cut out for her in the coming weeks. Right now, she's wearing them for a few stints per day and its all practice practice practice. Hopefully this gal will be learning to walk short distances by herself before long.
But she is already completely blowing us away!!

And without someone in our corner pushing our gal and teaching J.B. and I a thing or two, we wouldn't be here! We're so thankful to have taken the chance with these braces and seeing what this little ball of sunshine can do.

Go Eliza go!!!