Monday, September 26, 2011

Long (and promising) day at clinic

Our check-in time for clinic was 8 a.m.

Mimi came over to see the boys off to school so we could head to the hospital early.

Earlier in the week, our appointments were confirmed. We would see the social worker, urology nurse, neurology nurse, occupational therapy, physiatrist, and some others. We also found out that her renal ultrasound (we have one almost every clinic appointment) was scheduled for 3 p.m. From the outset, it looked like it was going to be a long day.

Once we got to the hospital, got checked in, and started the process of answering what feels like 1000 questions about the last six months of Esther-Faith's life, we got word that there was a cancellation in ultrasound and Esther-Faith was going to have her renal ultrasound at 9 a.m. instead of 3 p.m.

Sigh of relief.


So, 30 minutes from her (new) appointment, we pushed fluids. She needed a full bladder to get good scans.

Some folks who we were not scheduled to see stopped in for social visits or just to catch up. One of those people was Brett--the wheelchair tech. Not only is he AWESOME at his job, he is also just a great guy. We shared books we've been reading. Our goals for Esther-Faith. She shared how much faster she wants to go. So, Brett went to his car and got an ultra-light, multi-purpose (can be used for every day or racing) PINK wheelchair for Esther-Faith to try. It did not have a seatbelt or tippers.

She loved it. L.O.V.E.D it.

Here she shows off her wheelie skills for Brett.

While Brett retrieved the fancy, new wheelchair, Esther-Faith and I headed to ultrasound.

The ultrasound tech was SUPER, VERYMUCH, ULTRA thorough. Don't get me wrong, I appreciate thorough. But seriously, they're not allowed to tell us anything, Tim was waiting back in the clinic room, and the minutes were dragging into an hour. Picture after picture after picture. Not by me, after the first couple of minutes, I forgot I had the camera. I just stared at the black and white screen-- not completely ignorant of what I was looking at, but still more confused than sure. I asked annoying questions. (I know, because she kind of rolled her eyes at me.) After a (really) long time, she gave me a catheter to empty Esther-Faith's bladder so she could get post-void pictures. Some more time (and lots more pictures) later, we packed up and headed back to Tim.

You'll never guess who was waiting when we got back... NICK!

Nick (who makes her orthotics) is Esther-Faith's favorite person at clinic. She thinks he makes a great dance partner. And in the morning when we were getting ready to go, she said she wanted to see Nick "first and last." In other words, she wasn't willing to fit anyone else into her busy clinic schedule.

After Nick, we met with the OT, the developmental pediatrician, the neuro-psych doctor, the pediatric resident, the urology nurse, the physiatrist (and her crew), and the neurology nurse. She hid from more than a few of the doctors.

I think one of the reasons Esther-Faith has never met a stranger (and why we're having such a difficult time teaching her stranger-danger) is because of appointments like this. Where there are lots of the same doctors she sees from clinic appointment to clinic appointment, but even MORE that she'll see once in her life, but that we ask her to allow to touch her feet and legs, check her shunt, ask her personal questions, and force her to be polite and accommodating.

I get it, they're learning to be the doctors of tomorrow, but for today, it seems so contradictory to tell her to be wary of strangers--oh but wait, not these ones. Or those ones over there. So, I'm left with questions about how to teach her stranger-danger while learning to trust the right people.

Some good news... and some great news.

The good news first: Esther-Faith will be participating in a clinical trial that will--over the course of a year--test for markers in urine that indicate a serious infection. She will also be testing a new, single-use (but more expensive) hydrophilic catheter for the duration of the year to determine if the incidence of UTIs goes down. Her catheters will be supplied (yay) and she'll have her urine tested periodically. We're all about finding new products that will help other SB patients!

The GREAT news: After talking to the neurology nurse about her symptoms, undergoing some simple tests, and understanding better what we're dealing with, the neurology nurse said that Esther-Faith is NOT experiencing increased tethering of her spinal cord! All SB patients have some tethering (it's the nature of the beast), and some will require de-tethering surgery and some will not. Currently, we are in the WILL NOT category! (Can I get a whoop-whoop?!)

Things can change fast or slow, and we're still learning, but even though it was one of the longest clinic appointments yet, we walked away with eight prescriptions, an appointment for followup testing with neuro-psych, an appointment for wheelchair clinic, and a script for an eight-week OT session, but feeling positive and reassured! (If not a little apprehensive about a racing wheelchair!)

After a quick lunch out, we took Esther-Faith to her favorite destination (Build-a-Bear) for a new friend: SNOOPY.

Saturday, September 24, 2011

Take THAT Spina Bifida!

Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.

I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers.

I'll let the video say the rest.

~Lisa (@ Heaven Sent)

Monday, September 19, 2011

First place

This past weekend was very busy at the HennHouse. Walk, Run, and Roll. Soccer game. The zoo. Company. Papa's 60th birthday party. Training. Work for mom. In addition to the "normal" stuff we do.

At the Walk, Run, and Roll, Esther-Faith placed FIRST among the rollers. We're super proud of her. Although, she's not really sure what the fuss is about. She likes to go fast. And fast she went. Sometimes holding onto a hand. Sometimes propelling herself. Sometimes doing a wheelie.

The point is, she had fun. First place or last. She had fun.

And we felt so loved to have so many of our friends and family--some in person, some in spirit--supporting an organization that means so much to us.

What about you? Does your local organization have a Walk, Run, and Roll? A Walk and Roll? Any kind of active fundraiser?

I would LOVE to create a post with all of the dates and locations of the races around the country. I think my 14-year-old son and I might just start to travel to run them!

Hanging out with Coach Ryan.
Esther-Faith loves Coach Ryan.
But when pressed, she will still tell you
that she loves Kate more.

Faster! Faster! Faster!

Isaiah ran the 5K in 26:23.
Then he left immediately and played in a soccer game.
I don't think that child EVER gets tired.

Loving on her boy Eamon.

Bagels after the race.

Her preschool friend Nathan.
She was SO HAPPY to see him.

Choosing her first place prize.
A stuffed puppy.
She named it "Pony."

Aunt Kristen got to come to the race this year!
Esther-Faith convinced her to run across the finish line with her.

Friday, September 16, 2011

Take THAT Spina Bifida!

In the Spina Bifida world, we have a saying. It's said any time a kid takes his first steps, or smiles after waking up from a surgery, or learns to do a backflip in a wheelchair.


You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.


We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.


That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.

Want one? Join the movement! TAKE THAT SPINA BIFIDA!

Friday, September 2, 2011

True Beauty

One thing I used to mourn when I was pregnant with Toby was how different Gracie's life would be. When we first found out we were expecting we were excited for us as a couple, but we were excited for us as a family more. Gracie would have a sibling and being only 15 months apart would seem to have to guarantee closeness. I pictured days of playing, park visiting, running and all kind of things.

After the dreaded diagnosis day I mourned different things and for different people. But man did I mourn for Gracie. I cried and cried about how different her life would be. How she would have to always be second. How his needs to a degree would always come before hers. How long I would be away from her. How much Toby would need me and how much she would have to grow up.

Parts of what I mourned are true. She did grow up faster. She deals with things as Toby's sister other kids dont even think about. (just the other day she got a chunk of hair pulled out because her hair got stuck in tobys braces when they were playing) She doesnt get to play the same way that some of her friends get to play with their brothers and/or sisters. She does have her mommy taken away more often for doctor's appointments, therapists and things. She deals with more stress when mommy and daddy get stressed about something coming up in Toby's life.

Toby is toby and man we love him, but he's not the easiest brother to get a long with.

And their relationship is lots of love with a little hate mixed in.

But I write this post not to share the woes of Gracie's life. I'm sure I havent even tapped the surface of what goes on in her head with everything. But I write this post to share Grace's beauty.

Toby life has made her more beautiful. Toby has allowed Grace to learn unselfishness faster than I could ever teach her. Toby has taught Grace about serving others. Toby has taught Grace patience. Toby has taught Grace the meaning of true love through tough times. Because of Toby Grace is who she is today. Toby has helped shaped Grace. He has helped make her beautiful. Her spirit is one of the most beautiful that I could ever describe. Toby's life has enabled Grace to learn life lessons few adults truly understand.

I look back at my tears for Grace and smile. Yes sometimes the tears still come, yes sometime its hard on her. But there is a smile through those tears now. (which isnt it almost always that way) Grace is beautiful beyond belief not because of her outward.....but because of everything that is within her.

This post came to my mind and these thoughts more clearly than ever before. For the past week we've been buckling down harder on Toby's back brace and leg brace. Well every morning Grace goes straight to his room and takes it off. I've never asked her to, Toby's never asked her to. She just does it. She gets in his bed and without a word starts to unstrap all the straps. She loves her brother and the older she gets the more she understand that things are harder and more difficult in his life. Today I snuck in and took a quick shot of her. I love this girl.

I hope that as you might be in different stages of this journey that you will remember how our children's lives truly make us and the people around us have true beauty.