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.




Saturday, October 1, 2016

spina bifida awareness month!




Before Eliza was born, I didn't have a great grasp of what spina bifida really was. Sure, I'd heard the term mentioned somewhere, but I barely knew what it entailed. I wonder how many of you could say the same? I hope that just witnessing our gal's story has taught you a handful of things! She is a little miracle and God is so wonderfully faithful to us thru her. 

Well, guess what? October is Spina Bifida Awareness Month! I can't wait to share some fun things! It's a month for us to remind folks what spina bifida really looks like, and how, as with all things in life, we can do better to love and support one another!



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!