Sunday, April 1, 2018

Shunt life, take two


We squeaked in our D.C. trip for Jake just days before Eliza was scheduled to have surgery, but as soon as we were home again, it was back to business. While it wasn't emergent, our gal really needed some serious attention.

We arrived at Vanderbilt in the wee morning hours and after a good deal of prep, our gal was in the operating room by 10 a.m.. 

The surgery that our neurosurgery team would be doing would be an exploratory brain surgery and a shunt revision. What is a shunt? Well, Eliza has a condition known as hydrocephalus, which is very common among individuals with spina bifida. It means that cerebral spinal fluid created in the brain has a hard time draining down through the rest of her body. Obviously, the brain cannot have massive fluid build up! Most with hydrocephalus have a shunt in their brain that creates a path for the spinal fluid to drain properly.

Despite the fact that its brain surgery, shunt surgeries are typically pretty quick and simply, thankfully. Our neuro team was taking quite a bit longer in the operating room this time because they were also doing an exploratory surgery along with the revision. Giving the confusing nature of both her symptoms and her scans, it wasn't clear if Eliza's shunt really was malfunctioning or working property. Basically they wanted to troubleshoot the existing shunt in order to confirm the malfunction. This was our biggest worry. What if they didn't find anything wrong with it? What if we sent our gal into the O.R. for no reason? Even though it was the best option for her, this mama was seriously stressing in the waiting room.

Thankfully, in the operating room, our neurosurgeon did find that Eliza's shunt had several clogs in it. It was only partially functioning. After replacing all the equipment in her little noggin', she was stitched up and sent on to recovery.




While her anesthesia recovery was a hot mess (typical for my gal), she actually slept well in the hospital that night. I credit it to the massive amount of Disney movies that I brought with us. I wore her out with cartoons and the nurses loved coming into our room and bursting into song. Since she was eating and sleeping well, the neuro team felt comfortable sending her home early. After just one night! Go Eliza!




 And what a girl I brought home! She was absolutely changed!! Her personality was so bright! Her speech crystal clear! She was busy and silly and fun! This malfunction had been going on for so long (4 months) that we had almost forgotten what life used to be like. No pressure on her brain? Of course she feels better! It was such a joyful celebration to see her light up again!

We'll have to work on that big section of shaved hair, but by golly, a small price to pay to have our gal back!






Sunday, March 25, 2018

Wilders take D.C.

This guy!! He has the most amazing big brain, but an even bigger heart! Jake is a mama’s boy that dotes on his sister and wants to be just like his Daddy. He tags along to all kinds of therapies and doctors visits without a single complaint and selflessly cares for others all the time. So by golly, it’s time for something special just for Jake! Our boy loves to travel more than any kid I know, so what better birthday fun than a trip? He’s spent months guessing cities all over the map and we’ve spent months teasing him that he was going to get an epic birthday trip to Decatur, or maybe Cullman. 

But the day arrived!! Since Jake is currently obsessed with American history and plans to be a future President, there only seemed to be one perfect place to take him this year. And while he would have been happy going to any new city, he’s been praying this week that we had picked his #1 choice! 
Pack your bags, Jake Wilder! It’s birthday week! And YES, we’re going to D.C.!!
For the super fun reveal video, look back over my Instagram! (@sarahwilder1)


D.C. also seemed like a great option for Eliza. The city is said to be super accessible, and while navigating a big metro area with a wheelie kiddo would be a new challenge for us, we wanted to give it a go! 

Our trip was full of the biggest D.C. highlights, so Jake could nerd out to the best of his abilities. 


DAY ONE

The day we arrived in D.C., we decided to go out on foot and explore the area around our hotel. Fortunately that area included one of the biggies - the White House! 




Afterwords we grab dinner at a local place old Ebbitt Grill. My sister-in-law who wants was on staff in the White House sent us this recommendation. It’s been across the street for years and is a hot spot for a lot of local politicians. The added twist? It was also St. Patrick’s Day! The restaurant was decked out to celebrate for Ireland and even had a touring bag pipe section playing every 10 minutes throughout the restaurant. The kids went crazy for it!



DAY TWO

Our first full day in DC we were ready to maximize our time and see as many of the sites as we could. Because both parking and traffic in DC is so difficult, you can’t really expect to zip from one thing to another without spending boatloads of money and/or time on travel. We decided to skip all of that and booked tickets with the Old Town Trolley tours. The trolleys stop at 25 awesome sites around the city and run every 30 minutes so you can hop on and hop off at any of the sites you’d like to visit. Since almost every place you want to see in DC is free, the cost of the tickets wasn’t that big of a deal for a full day of sight seeing. 

The trolley tour would also pick us up from our hotel and bring us to their first stop, so we could jump on the tour. Win! 

The tour actually begins right across the street from Ford’s Theater, where President Lincoln was shot during a show. Tours of Ford’s Theater are free but you have to snag a ticket in advance to get it. Thankfully I figured this out 48 hours ahead of time and was able to grab those! 

The tour was great! People were lined up outside the theater for their time slots, and when the staff saw us in like with E’s wheels, they pulled us out of line ahead of time to come inside and use the elevator to get to each of the tour floors of the theater. 
We got to sit in the audience and hear a Ranger give the account of what led up the night. Super cool! 


From there we jumped on the first trolley! Most of the trolleys are accessible with chair lifts, but not all. They gave us a phone number to call and said anytime we needed an accessible trolley, we could call and they went send one straight out to us! Wow!! 
But as it turned out, Eliza’s chair is tiny enough to fit on any trolley! So no need for any special set up! 

We spent the day traveling all over D.C.! Stops like the Washington Monument, the National Mall, the Jefferson Memorial, the FDR Memorial, Union Station, Arlington Cemetery, the Lincoln Memorial and more! What we didn’t stop at, we could see from the open air trolley so the views were awesome! Jake went crazy and each and every stop. I teared up, reading to him the words from the Declaration of Independence inscribed on the walls of the Jefferson Memorial. So proud to have a family that represents differences, a country that acknowledges that as a positive thing, and little boy who loves all people with all his heart! 





One of our most special moments happened at the FDR Memorial when our gal found a statue of the former President that absolutely lit up her day! She went flying up to FDR in his wheelchair and said “I can be just like him!!!” It was amazing, y’all! Yes, baby girl, you absolutely can! 
Behind the statue there is a beautiful quote from his wife Eleanor that says, “Franklin’s illness gave him strength and courage that he had not had before. He has to think out the fundamentals of living and learning the greatest of all life lessons - infinite patience and never ending persistence.” 
 
Whew. So much for my mama heart. 

We finished out the day by walking back to our hotel and happened to stop by the Smithsonian Museum of Art. We didn’t plan to do museums that that, and honestly the Art Museum wasn’t on the short list, but Jake informed us that he HAD TO see the Hall of Presidents with all of the presidential portraits. Definitely a fun stop! He loved the JFK and Obama portraits because they both had a lot of turquoise. Ha! His favorite color! Just like a kiddo! 



DAY THREE: 


We started the morning by trying something we were terrified of - The Metro! Just like the Subway in NYC, it’s an underground system that runs through the city. We didn’t know what we were doing to begin with, but how tricky would it be with Eliza? Would it be accessible??


 

We did it!! Finding elevators down to the Metro was definitely the trickiest thing since there weren’t all located in obvious places near the stop - sometimes as much as a block away! Once we learned how to look and what we were looking for, we felt less idiotic. 




And where were going? The National Zoo! 
We spent the morning checking out animals, especially the sweet pandas! 



Afterwards we headed back downtown. Eliza took and nap and Jake and I explored the Smithsonian Air and Space Museum. 




Around 4pm, we got to surprise Jake with the best moment of the trip - a private tour of the Capitol!!





 One of my awesome mom friends lives locally and reminded me that her hubby was on staff there. He called and volunteered to walk us around the Capitol building!!! How fun!! We got to see all the cool spots in the Capitol, and even sit in the galleries of BOTH the House or Representatives and the Senate! While they were in session! 
Best yet?? The House was have a special vote that night on two bills! We got to sit in the gallery and watch the first one. Then for the second one, our friend Danny took Jake down to the House floor. Jake got to meet Mo Brooks, our representative in north Alabama. And Congressman Brooks took Jake onto the floor!! JB and I watch from the gallery as Jake got vote on behalf of Congressman Brooks! So so so cool! No one is allowed on the House floor aside from Congress, staff or children under 12 that are escorted by Congress! 

Y’all!! His life was made!!! Such an amazing day! 






DAY FOUR:

Jake’s birthday!!! We started with presents in bed, of course!! And spent the day doing everything Jake loves! Museums and local pizza! 

We took the metro everywhere because the kids were obsessed! And we spent the morning at the new Museum of the Bible, which was amazing! We ate lunch in their cafe, which all more authentic food to how things were in the Bible. Jake LOVED tasting new things! 




Then we spent the afternoon on the Mall going to the American History Museum and the Museum of Natural History. 




Then we went out for pizza! 
They surprised Jake with a brownie cake at even scrounged up some candles the restaurant! This mama was so thankful because I totally for that! 



The next day, we left Washington DC in six inches of snow! Just a super fun little way to say goodbye!! 

What a great trip for our whole family! We had the BEST time!! Happy Birthday Jake!! 







Tuesday, March 13, 2018

A Plan!


There is a plan! I repeat, there is a plan!

For the past two weeks, we’ve done what we do best and have trekked our way back and forth on I65 to Nashville. Eliza had a day of testing and sedations, a day of SB clinic, and a day of neurosurgery appointments.

Ultimately, teams like orthopedic surgery, urology, nephrology, and physical therapy all signed off on her pain symptoms. “It’s not us”, they said. Which was necessary, but expected. That leaves us back to the basics with neurosurgery.

So here’s the catch in all this craziness... Eliza has been in serious pain now for three months. We’ve been tracking her symptoms and complaints since December. She’s slowed down to almost a stop, is struggling with her vision, has lost movement in one leg, and has constant pain in her back and neck. At times she gets headaches she just screams through until they pass. But...her scans are flawless. They are perfect! Vanderbilt has tackled multiple fast sequence MRIs, sedated scans, and X-rays searching for the source of this business, but everything looks just right.

This week we met with our team and I basically told them under no uncertain terms that they absolutely would come up with a plan because Eliza isn’t continuing on indefinitely. We needed something . A course of treatment. Anything other than just watching her decline.

Thankfully, they wholeheartedly agreed. They’ve spent a lot of this time alongside us, watching her fall apart. They knew her normal and they knew this mama doesn’t play.

So there’s a plan! Her neurosurgeon feels pretty confident that Eliza has an intermittent malfunction in her shunt. Basically it works, then it slows to a clog, then it doesn’t work, then the built up pressure of the clog clears everything thru and it starts all over again. It would explain why she doesn’t feel well most of the time, but also why her acute shunt failure symptoms are still resolving themselves. They’ve asked to do an exploratory surgery on her brain to try to locate the problem. Ultimately, they’ll also be replacing her shunt while they’re in there.

This is all a bit nerve wracking because the surgery is basically based on a hunch. Both mine and theirs. And it can’t go without saying that it’s possible that they could poke around in her brain and come up with nothing...

But it’s the best option we have. It’s where we have to start.

They do not consider Eliza’s case to be emergent yet. We also have a vacation planned for next week (yay for the ever awkward Wilder timing, ha!) so they’ve asked that we observe for two more weeks and then meet up in the OR.




Guys, just having a plan feels so good. It’s weird to say that. Who’s excited about their kid having brain surgery?? But SOME action is needed. Eliza’s quality of life is the pits and that’s no longer acceptable. I’m so grateful that we have a team that leans in to listen and trust mom and dad. And that knows our kiddo well enough themselves to have their own gut feelings.

So surgery in two weeks.

And since you’ve hung in there through my pitfalls and whining the last few months, I can absolutely promise that the next update here will be a fun one. We have quite an adventure planned for our oldest, Jake! Stay tuned to travel along!



Wednesday, February 28, 2018

This too shall pass...

The crazy season of 2018 appointments continues!

Our big win - Bladder surgery was a great success!! We’ve walked a fine line with urology for the last year, always feeling like the other shoe will drop at any time. But another successful surgery is fantastic news! Hopefully this one will hold things off for another six months or so!

The bad news - poor Eliza has been really struggling. She’s dealing with a lot of pain for the most part. Back pain, neck pain, and headaches, which as you can imagine, don’t bode well for a kiddo with her history. Her whole demeanor has changed dramatically since December and we are really struggling to keep her comfortable. Our physical therapists aren’t getting much out of her and her entire body just seems so much weaker. I’ve been in communication with our neurosurgery team about her slow decline over the past few months and we’ve set up an array of scans and appointments to see what’s going on.

Things got especially acute a few days ago, and we found ourselves in the Vanderbilt ER. I would have put all my dollars on the idea that our girl was having a shunt malfunction. So many of the signs were there! But after being at the hospital for a few hours, she magically perked up a bit. They ran all the typical tests to check things out (MRI, X-ray series of her shunt) and everything was perfect. UGH!! I can’t even begin to type how frustrating it is to deal with something so obvious, then have it slip away! I felt like a crazy person! But we agreed with neurosurgery to keep our upcoming appointments next week for the more intense testing that would find more definitive details. And in the meantime, we’ll keep an even closer eye on our girl.

Seeing someone so tiny, in so much pain, for such a long time, has been really hard. We are desperate for her to feel better. The good days are tolerable - grumpy and whiny and slow to get through. The bad days are torture - Eliza in constant tears and usually me holding her most of the day. It’s no way to function. A miserable toddler and chaos of all the mountains of individualized trips to Vanderbilt lately are wearing on us all.

I guess this is one of those complaint ridden, hard times updates. I try not to give off the air that things are difficult, but quite frankly, sometimes they just are! Isn’t that true of anyone’s life? Sometimes things are just hard. We are overwhelmed with appointments and travel time at the moment. Overwhelmed with how many specialists have big concerns with her health. Overwhelmed with home life being difficult with her being in this much pain. Overwhelmed with trying to keep up with the every day things on our calendar. Overwhelmed with how sadly unsupportive much of my family has been for Eliza and knowing what a difference involved family could make at a time like this.

So we just take a deep breath and acknowledge that this is a season. It’s frustrating to have her grandparents living nearby and not so much as ask about her or see my kiddos for months, but that also means we are all the more thankful for the few folks that we depend on constantly! Lifesavers! Weekly trips to Vanderbilt and hotel stays are wearing on us, but we see some of the best specialists in the WORLD! My gal is miserable and it’s breaking my heart, but I’m on top of this. We WILL figure it out. She’s a gem for hanging with it and like all things, this too shall pass.

So if I have a little less patience. If I say “no” to things more often. If I want to spoil Jake for being such a trooper. Just go with it. This too shall pass!

Crossing our fingers for some news next week!



Thursday, January 18, 2018

new year, new specialists



What is it about the first of the year that always seems so harsh? The holidays bring out your fat pants. The winter brings the bitter cold. And for the love, those insurance deductibles start over again! Goodness January, be kind to us.

Eliza has herself quite the line up this month, and surprisingly, we’ve had to add some new specialties to her list. J.B. says we need a Vanderbilt Bingo board to see if we can black out every specialty they offer. Do you think there are prizes?

This week, we headed to Vanderbilt to see the ophthalmologist. Eliza has had some issues with her eyes and there was concern that her optic nerve might be under pressure. Eye issues are pretty common in kids with spina bifida. Because of the hydrocephalus, shunts, and general craziness going on in the center of the brain, sometimes the eyes have their work cut out for them.
As it turns out, Eliza’s optic nerve looks great right now! But one of her eyes specifically is still turning in. Based on how her eyes react to this, she’s not a good candidate for glasses so the team is going to wait and see a few months longer before they start patching or consider a surgical intervention. The hope is that the time period might show it improving on its own! Fingers crossed!


This trip we swung by the murals in Nashville's The Gulch. The kids loved them!



We’re working hard with a Birmingham company to have her fitted for some new orthotics (leg braces). This is a pretty big deal because these braces are significantly lower that her previous set. Whether or not she can actually manage in them is completely up for debate, but our therapist wanted to give it a try. We’re crossing all our fingers that she’s strong enough for the change, and making a billion trips to Birmingham to have them refitted over and over again.




Next week, we're back at Vanderbilt for Eliza's urology surgery. This is a repeat of the one she had done last summer, and we're hoping for another great success! After the surgery, we'll have a follow up in four weeks with retesting done to determine if it took! Fingers crossed!

The following week, we're back at Vanderbilt again (yup, that's three for three!). This time we're being set up to meet with the Nephrology team. Nephrology isn't a specialty that we've ever seen before, but after Eliza's last round of urological testing, there were some big concerns about how well her kidneys were functioning. Urology and Nephrology do work together, but they have pretty distinct purposes. Apparently these results are dramatic enough that our current team wants us to consult with this other group and work on some more things to preserve her organ function. Admittedly, this makes us pretty nervous. We aren't totally sure how bad things are or what Nephrology will want to do. We're definitely anxious to meet with the new folks and see where we stand. 


But Eliza doesn't even notice all the craziness, thankfully. She is just a playful, fun loving toddler, enjoying everything in life. Recently her vocabulary has really taken off, and I think it surprises some people! Looks like a one year old and talks like a three or four year old, ha! 
We are eyeballs deep in Disney princesses and taken over by Frozen fever. Life with girls!


So the plan is to coast on through all these procedures and appointments this month without too much drama! If you need us, we'll be singing Let It Go and cheering on the arrival of February!




Sunday, December 31, 2017

2017 in review




Its hard to believe that 2017 is already coming to a close! In reflecting back over the past year, we have had so many great successes to celebrate! 




Eliza got her first chair! This bad boy has been such a game changer for her. I know for a lot of folks, a wheelchair might seem like a sad thing. But I promise you, it’s freedom!! It’s a budding personality and independence!




She had successful urological surgery. This is still a huge win for us because the odds for both procedures to be a success were so low! It’s been over six months since that surgery, so we’ve actually just been back to Vanderbilt to see how things are holding up. It looks like she’s going to tackle another round of this surgery in January, so we’re praying for another success!






We quickly sold our home (yay!) and moved to an accessible house (double yay!!!). This has been another major change that has had such a dramatic effect on every day life for Eliza! If we thought her personality blossomed with that chair, we were in for a shock to see how outgoing she became once she had free reign over her own digs! I am loving giving this girl accessibility and letting her grow! 




Eliza modeled for Matilda Jane Clothing! Highlight of a lifetime, guys. That trip was amazing and that company is so special. We are forever thankful for what MJC does in our world. 




We conquered Disney World! Big trips and the unknown are a bit tricky when you have things like a wheelie kid to consider. But Disney was amazing! I love how easy they make it for families to all just enjoy the trip. My babies are already planning their next trip. 



We made our first wheelie costume(s) for Halloween. The best!!



Of course, there have been plenty of low moments for the year. Doctors appointments have gone badly. Family members have quit on my kiddo because she’s different. Insurance companies have given us more than a few fights. But we’ve found that concentrating on the positive is a lot more fruitful. 2017 has been a pretty lovely year with a lot of great successes. God is doing some amazing things with this little gal and we are so thankful to be a part of it!

Cheers to next year!


Monday, November 13, 2017

accessible costumes!



Many of you may know that we are big time Halloween folks! Even before the kids were born, we were dressing up and throwing spooky parties. 

Nowadays, family costumes are the ultimate tradition.





Each year, we sponsor a car trunk at our church's Light The Night festival a few days before Halloween. It's a trunk or treat that usually boasts around 40-50 cars to trick or treat thru, inflatables, food trucks, games, face painting, and more! The crowds are huge, so a few years ago we decided it would be awesome to host a trunk and not worry about fighting our way through the mass of people. Winning, y'all.





So this year, our family theme was cavemen! I bought tons of fleece and fur to make the layered costumes and we snagged some accessories from the Halloween store. The kids loved their costumes, which turned out to be a perfect match with the chilly night. We created a cave out of the back hatch of our SUV thanks to a wooden frame, some butcher paper, and our leftover fabric. We even put together a campfire!

But that hot pink wheelchair sure should out. So we decided to incorporate it into our theme! I covered the metal with strips of torn brown fabric, added some plastic bones to  a few sections, and then created stone wheels to go on the outside of her wheels! It was perfect!!

I love that Eliza's chair can be a part of the Halloween fun and not a hindrance to it! 
As a bonus, we also won third place in the trunk decorating contest!





For Halloween night, we planned to take the kids trick or treating in our new neighborhood. But Halloween with a wheelie kid can be a more trick than treat. You see, Eliza can't get up the front steps of a house to ring the doorbell. And you'd be surprised how many folks will merely open their door and not come down the 4-5 steps to her. In the hopes to make folks on the nearby streets aware, we tossed these in the mailboxes:




For Halloween, the kids get to dress up as whatever they want (since Mom takes over the festival night with family costumes). And both Jake and Eliza decided to be pirates! I not so secretly loved that that a. Didn't choose characters and b. Picked to dress up together. #momwin

And again, I tried to pull out the stops with a costumes that blended in Eliza's chair to her pirate get up. Allow me to reveal The Wilder of the Seas!:




Seriously guys, how cute are they?!

Eliza's ship cost me two cans of brown spray paint and a couple of PVC joints. Everything else can straight out of the garage! (I'm not sure what that says about the state of our garage...)

It's made from a cardboard box, and PVC pieces. Some scrap fabric made for the sale and everything else is just painted on! She LOVED it!





We were a big hit on the streets with her costume, and quite a few folks loved checking out how it was made. I will say that because Eliza is so small, I think a lot of folks really thought she was a baby in a stroller. In the dark, you really couldn't tell what was behind the pirate ship! A lot of our neighbors were absolutely lovely, though we did have 10-12 houses that totally didn't get our "wheelie kid" memo. Several ignored Eliza all together, and other handed candy to her brother to give her. Whomp whomp. But hey, there's next year! We plan to be in this neighborhood for quite some time, so hopefully we can bring some fun awareness to our neighbors.

Surely, they'll remember us next year...