Sunday, June 18, 2017

Heck yes!!


So y'all know we've been on the struggle bus with urology for the last few months. Basically, our relationship with the department has been entirely too close since March. 
"I like you guys... I just hope to never see you..."

And I know you folks have been anxiously awaiting an update on the latest. 
So let me just get right to it.

Last month, Eliza had two procedures done at Vanderbilt. Effects from her spina bifida were causing bladder and kidney damage, which I'm sure I don't have to tell you is absolutely no bueno. The procedures were both a long shot that we almost didn't get, had it not been for the hopefulness of our amazing team up there. The odds of either of them being successful were around 40%. The odds of both of them being successful? 15-20% at best.
Failure meant another, more evasive surgery. Truthfully, the team prepped us for the worst case scenario because it was most likely. We were prayed up for God to provide the best path for our gal.


Today, one month post op, Eliza and I headed back to Nashville for her to undergo tests to see where we landed. Y'all. EPIC SUCCESS!!! After our beloved urologist picked her jaw and mine up off the floor, she outlined the results, which were one of the best she's ever seen from this procedure!! We're all stunned. STUNNED. 

I'm a realist, y'all. So I usually just sit in the middle of all the possibilities, planning myself to death, and hope for the best. I wasn't ready for this awesome news today!

God is so dang good to us. So much moreso than we could ever deserve!
This procedure will have to be redone every 6-12 months. And we'll hold our breaths for every unveiling afterwards until it stops working. But today? Today we celebrate!! And by celebrate, I mean go pick up Eliza's brand new dynamic stander. YES!! Amazing news AND new equipment all in one day! It's like spina bifida Christmas up in here!! 
  




(stay tuned for more on our shiny new toy - the dynamic stander!)


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. Spina bifida damages the nerves to the bowel and bladder that are at the very base of the spine. The location of those nerves  means this is something that almost everyone deals with, wheelie folks or completely ambulatory. It catches everyone. 
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 new 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!!






Tuesday, March 14, 2017

when spina bifida clinic kicks your tail...



There was a bit of a development as our time in Nashville progressed... 


Things said on Sunday: 
"Spina Bifida Clinic has arrived!! Bring on the docs!"


Accessible playground fun before heading to the hospital! 



 Things said on Monday night: 
"Spina Bifida Clinic is finally over. And it kicked our fannies."

For those of you just tuning into our corner of the world, Spina Bifida Clinic is a routine bunch of appointments set up by our hospital. We are a part of the Spina Bifida Clinic at Vanderbilt Children's Hospital in Nashville, where Eliza is seen by some of the world's best pediatric specialists! Our clinic coordinator, Rose, arranges all of our appointments and we just show up with a six pack of Red Bull and a can-do attitude. 
The Red Bull part isn't really true. I'm more of an iced coffee gal. But it legit does take quite a few to get us through the ordeal. 

A typical clinic starts at the crack of dawn with a wide assortment of tests and scans. Sometimes, these are evasive enough that Eliza even has to be put to sleep. It all just depends on what our docs have requested based on her age and needs. Some of the specialists we see at Vanderbilt include neurosurgery, orthopaedics, urology, gastroenterology, physical therapy, occupational therapy, and nutrician. As you can imagine, scans for many of these, followed by appointments with each, make up a pretty exhausting experience. The great part is, by seeing everyone in one seemingly neverending visit, we don't have to make individual trips to Nashville every couple of weeks! 

And this time, we had our first ever negative visit. 
Whomp. Whomp.

The giant storm cloud? Major changes to Eliza's typically perfect urological scans showed that it's time for some big daily intervention in order to protect her organs. What does this mean? Basically we have to dramatically alter her care in order to prevent any further damage to her bladder and kidneys. We also have to start a big' ole dose of medication that's heavy on the side effects. Fun, right? 

This sort of thing is very, very normal in the spina bifida world. Nerve damage to the bowel and bladder area is an issue even before any mobility damage occurs, meaning it hits just about everyone with spina bifida, regardless of their physical function. We've just been incredibly lucky thus far to be able to avoid complications. But while we knew in the back of our minds that it was an impending hurdle, I can honestly say that we weren't prepared for the news yesterday. All of her previous scans have been so good, and she hasn't been sick! We didn't expect this bombshell at clinic this round and we felt a bit blindsided by the problem. Y'all know how this plannin' mama feels about surprises... Spoiler alert: I hate surprises. 

Thankfully, our Vanderbilt family took extensive time to teach us how to handle the situation, and best prepared us to care for Eliza from here on out. 

As we drove home from Nashville, contemplating what life would look like now, we were also notified by our insurance company that none of her medically necessary supplies would be covered!! None! Nada! Zilch! Go plant a money tree, Wilders, because us insurance folks aren't helping you one bit. My brain couldn't compute how our perfectly ordinary health insurance company would rather deal with an organ transplant or kidney dialysis than just pay for some dumb daily supplies. 

Boatloads of frustrations yesterday, guys. Giant boats. Barges. So much defeat. 
Obscenities were left in both the Vanderbilt Clinic and along I-65 on the way home.
Just keeping it real, folks. 

But today.... Today is a new day, y'all. 
Today has been day one of a new care plan for Eliza, and thankfully she has taken to it well.
Today is the beginning of a lengthy medical appeal process for us, and we're optimistic that someday these dummies at the other end of our insurance policy will approve her necessary care. 
Today is the day that several other spina bifida moms across the country have volunteered to ship their own supplies to us to help get us through a few weeks before we have to shell out the big bucks!! Special needs families for the win! 
Today is the day we remember to celebrate all the other specialists at Vanderbilt that gave Eliza gold stars! 
And today is the day that, despite the frustrating setbacks, we're still crazy thankful for our awesome medical team and how God keeps using folks in our lives to keep our sweet girl rolling! Thanks for the encouragement, friends! 

God doesn't always answer our prayers in the ways we plan, but He certainly carves out His path for us to faithfully follow. And we know He'll come thru for us here as well. Even on the hard days, we certainly feel like a pretty lucky little family! 




I mean, with faces like these, who could be down and out!?


 P.S. Y'all say a prayer for the poor soul at United Healthcare, who has caught the Wilder wrath two days in a row! May he get a raise and a few extras days off! 



Thursday, March 9, 2017

walking!!



"She won't be able to walk."
"Ever."
"She can't do it."
"Give up the idea."
"It's not physically possible."
"Let it go."
"You're delusional."
"Listen to science."
"Stop dreaming."
"Just leave her in her chair."
"Be realistic."
"That's too hard for her!"
"You're aware of her diagnosis, right?" 


Hours and hours of work. Thousands of dollars in braces and equipment. More thousands in physical therapy. One miraculous, stubborn, beautiful, hard working little girl. And a God that is bigger than anything we can imagine. Her walking is slow and difficult. And it will be only in short distances. But she's walking all by herself. Only 18 months old and she's off to conquer the world. Take that, spina bifida. 



Pop over to FB or Instagram to see my girl go via video! 




Tuesday, January 24, 2017

wheels!!



Allow me to interrupt your regularly scheduled broadcast to announce... 





After waiting almost five months since she was fitted, this gal finally got her big girl wheels! Eliza is so proud of herself and J.B. and I are so excited for where this wheelchair will take her. While as parents, this milestone certainly has its share of mixed emotions, we know that this chair means freedom and independence for our girl!



Eliza's chair is called a TiLite Twist, and its custom built just for her tiny little self! The seat is seriously only 8" wide!

Her Bumbo seat (read more about that HERE) served her so well for a bigger wheelchair. Although the wheel placement was a bit different and the chair sits much higher, she knew just what to do! Within a day or two, she was a pro!!

Eliza is already buzzing all around the house, the children's museum, the library, and of course, the church nursery. Other kids love to come over and talk to her in her chair, and its a great opportunity for them to see that she's a regular kiddo, just like them!

We also have quite a few that like to try to push girlfriend around. Its tempting, right? But we try to explain to folks (both young and old), that's Eliza's chair is basically an extension of her. You would want something behind you pushing you everywhere all the time would you? Heck no! So we try to only guide or help her in the same way that you would grab a toddler's hand and lead them - parking lots, large areas, ... when they aren't paying any darn attention, when they are going as sloooooow as a sloth. If you've got kids, you hear me here...



You can see her face just light up as she can go and do whatever she likes at her own pace!
That independence is the very best thing for this mama to see.
 
Speaking of light up, those front wheels are motion activated to light up as she rolls.
Helllllooo, disco!





Totally worth the wait!
Loving this girl's determination and independence! 



Thursday, December 1, 2016

Eliza's Bumbo wheelchair



By now, I think most of our friends and family have seen Eliza work her wonders in her Bumbo wheelchair.




This is a piece of equipment that has been such a game changer for us, and I definitely wanted to dedicate a post to detailing how this chair has been so impactful. 






I first saw the concept of a Bumbo Wheelchair over on my friend Mary Evelyn's blog What Do You Do, Dear? Her son Simeon is Jake's age, was born with spina bifida, and was a quick pro in a wheelchair. He had this fabulous little seat that they referred to as a Bumbo
wheelchair and I was fascinated. 

Does a "real" commercial wheelchair for a baby or toddler exist? Yes! It's called a ZipZak! And while it's super cool, it's also pretty pricey and not covered by insurance. Enter the Bumbo Chair, a handmade version for a fraction of the price. The name comes from the fact that a lot of folks use the infant Bumbo seat as the main seating base of the chair. 
Note: There are several other brands of this same style seat that might fit your kiddo better. Be sure to look around at the options and given them some room to grow! 



So what's this thing made of?
The base of the wheelchair is created with a large cutting board. The wheels were originally designed for a bicycle.  And castors are added to the bottom to create a tip option when the kiddo wants to reach and pick something up off the floor. 
The chair sits just barely off the ground - a similar placement to a child that would be walking or crawling themselves. 

So why is the Bumbo Chair important? Well, did you know that so much of our cognitive development is directly linked to our ability to move around and explore? Kids Eliza's age learn thru touch and feel and checking things out. If she doesn't have the ability to move freely in her surroundings, she will have a harder time staying in line with her peers that are learning thru play. 

The Bumbo Chair gives her that independence and freedom! 





I'm fortunate to have a father in law that took all of the plans I could find online, and created this amazing piece of equipment for her! 

Around ten months old, we started placing Eliza in the chair to see how she took to it. It's definitely a pretty big skill to master, but over time she went from just rolling the wheels forward and back an inch or two, to crushing allllll over the place. 

She has free reign of the house in her wheels, and we love that it gives her the ability to play with her peers at church, or cruise around the local children's museum. 






Since she's gotten the knack of this chair, we've seen her flourish! She's constantly talking, learning, and moving! It's amazing what a fantastic impact something like this can have!

I'm just so glad that we have it! We ordered Eliza's first real wheelchair back in September and have gotten exactly no where with it. This is pretty standard for mobility companies, insurance claims, and custom built devices. We have no idea how long an approval will take and when we'll ever get a standard chair for all. All the more reason that she has this Bumbo chair as a way to get around!




  
Are you a interested in building a Bumbo wheelchair for a sweet baby you know? Start here! 

Tuesday, October 18, 2016

welcome to holland






When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, ever, ever go away because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.






I don't remember where I was when I first read 'Welcome to Holland", but sometime between Eliza's diagnosis and her birth, this beautiful essay was passed along to me. It's truly a rite of passage among special needs parents. 
  
 Processing the idea of becoming a special needs parent or family is a hard blow. There are many things to grieve and let go of. There are a lot of harsh new realities to face. There is a new depth of anger, denial, and sadness to reach.

It is always turbulent.

But this is also a story of redefined beauty.

It begins in the moment where you find the strength in this new place - this new home that you'll inhabit forever. You find its purest and most miraculous qualities. You find its encouragement and inspiration. And the deepest and most meaningful of ways, you find that you yourself, have been changed forever because of this journey.  

Holland? I'm a big fan.