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.

BIG.

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.

Sick?

The constant "snap, snap" of Isaiah taking apart the k'nex Ferris wheel in the other room was soothing as I rocked back and forth with my head in my hands. I had just poured through Proverbs 3 seeking comfort and promise from the scriptures I believe, while simultaneously struggling with worry about my daughter upstairs.

She was sick. For the second time this week. Mysterious, sudden, and scary sick. She wanted the comfort of her favorite movie and her favorite brother. I obliged with both. Isaac wouldn't have it any other way. So, he sat vigil next to her bed while she watched "Cars."

Every time she flinched, grabbed her stomach, grimaced in pain, whimpered in fear, or needed anything, he was at her beck and call. He fetched her anything she needed or wanted. He jumped at each sound. And he did it all voluntarily.

I sent Tim scarce updates via text. I knew he was busy working, and I didn't want him to worry. But an hour before his shift ended, he took leave and made his way home. She had a rough night--up every couple of hours. I had a rough night, too. Barely sleeping. Up every few minutes to check on her. Worrying. At 1:45 a.m. she panicked because I had sent Isaac to his own bed. Isaac, the BEST big brother on the planet, came back to her bedroom and camped out on her floor.

By the morning, she seemed to be back to her old self. Just like what happened on Tuesday night/Wednesday morning. She asked for cereal. And she wanted to play. She didn't seem sick at all.

I've been doing this long enough to know that sometimes what seems like a simple illness is more than it seems. Sometimes, what presents as a virus is a virus. And sometimes, what presents as a virus is an intestinal blockage or shunt malfunction.

And that is what we suspect this time. The sudden sickness. The additional symptoms. The unpredictably of it all.

We'll ask her how she is feeling, and she will answer, "Great!" Even as she clutches her body in obvious pain.

So, every time she is sick, my mind goes to the dark places that borrow trouble from the unknown. I worry about what is and what could be. About getting appointments and tests scheduled. Taking time off work. Getting results. Doing it all alone.

Even as we approach this next chapter in her care, I am aware that we are walking this road together. Last night, as he picked up toys and nervously cleaned, Isaiah kept saying, "Even if she is sick, she will be okay."

His love for her palpable. His worry inescapable. His commitment to his sister and his family unflappable. His trust was in the one who gave the promise I poured through in Proverbs. The boys and I stayed up late watching a movie based on a book they had both read. We checked on Esther-Faith every few minutes. And we prayed a lot.

Because even if she is "just sick" or more than "just sick," we know that in the end, it will all be ok.

Let love and faithfulness never leave you;

bind them around your neck,

write them on the tablet of your heart.

Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways submit to him,

and he will make your paths straight.

Proverbs 3:3, 5-6

Painting her new pencil box for kindergarten on Wednesday.

Cake-tastrophe

It had all the makings of a busy weekend. Lots of appointments, plans, and things to do. Including two birthday parties for the new five year old in the house.

We left the boys' therapy appointments and made our first stop at the party store. Parking in one of the 15-minute spots, we swiftly made our way through the store in search of a game that roughly 12 children of varying ages and ability levels could play. We had no luck. So we headed to the store to pick up the first of two birthday cakes. 

Before you judge, let me explain. Yes, I almost ALWAYS make the birthday cakes. And they almost always taste better than anything store-bought, but I BAKE. I haven't done an elaborate decorating job in years. My sister--who is fantastically creative and gifted with frosting--decorates. We're a team--a GOOD team. I bake. She decorates. BUT, Kristen was out of town this weekend. So, knowing I needed a couple of elaborately decorated tinkerbell cakes, and knowing my decorator was out of town, I turned to the professionals. It was actually Tim's decision. And he even called the bakery where my sister used to be a decorator. 

That said, I saw the cake. It looked nice. I paid for the cake. The price was kind of low. I called Tim on the way to pick up the second cake. He sent me back to the first place. They made the wrong size. So they make a second cake--on the house. 

At the second store (an ice cream store), we had place a special order. Because Esther-Faith cannot have chocolate, Tim ordered a cake with all vanilla in one half and chocolate and vanilla in the other half. And he ordered it to also be elaborately decorated with Tinkerbell. I walked in. She showed me the cake. Esther-Faith's name was spelled wrong. I asked for it to be fixed. I was treated poorly by the barely-older-than-my-son employees. 

Me: "Is there any way you can fix her name."

Employee: "Ummmm. Well, I don't know."

Me: "It's kind of important that her name be spelled right on her birthday cake."

Employee: "Well, it's close."

Me: "Right. But I did not order and pay for a cake that had my daughter's name almost right."

Employee: "Well, ummmm, I'll see what I can do."

Me: "Her name is spelled, "E-S-T-H-E-R-hyphen-F-A-I-T-H. Do you need me to write it down for you."

Employee: "No. It's right here on the slip."

(And she showed me the slip. And there was her name. Spelled the right way.)

Me: (a little dumbfounded) "Okay. Thanks for fixing it."

Isaiah called the series of events a "cake-tastrophe."

After that cake was fixed, we headed home. Once home, we ate lunch, and planned out the rest of the day. Where we would go. What we still needed to buy. What chores needed to be completed before company showed up. Etc... 

Then I started prepping the food. Lasagna for 30. Salad. Ice cream. We did chores and rearranged rooms. Eventually, we headed out. We had four stops to make. We had a plan, and even with five of us, it only took about an hour to get everything done, and then we headed back home. 

Sunday dawned. I made cinnamon rolls for breakfast. We planned to go to church, but time got away from us and we settled into chores and finishing preparations for the parties. There were two. One for Esther-Faith's friends from preschool and daycare at 2 p.m. And one for our friends and other grown-ups who care deeply about our daughter at 5 p.m. 

Around 1 p.m., Esther-Faith got sick. Not just sick, but sick like she did a month ago. Sick like she did a year ago. And we started calling everyone who had sent an RSVP to cancel the party. We were all upset. Esther-Faith was crushed. She was exhausted from being sick, but still wanted a party. By 2:30 or so, she seemed bounce back to her usual self. Bounding around the house. Eager to get her party on. Tim and I sent some tentative messages. To my mom. And Kate. And some close friends. That if they were feeling brave, we would still love to see them.

You know, there are times that I am just astounded by the support we have. People who show up and love us no matter how hard life gets. No matter how messy or challenging or tiring or scary or exhausting. They're here. Or wherever we are. To make us laugh. To help ease our nerves. 

Today, Esther-Faith played with all of the "prizes" that we bought to give her friends who won the party games. We did cut into the ice cream cake. But there are still two white cakes with white frosting and elaborate Tinkerbell decorations. Uncut. Untouched. In the garage (which is below freezing). We've got loads of salad left. And thank goodness the 14-year-old eats enough for an army, because we'll probably only have leftover lasagna for a couple of days instead of weeks. 

We're still on high alert. She threw a temper fit to end all temper fits today. Her appetite is still a little off. And she's not entirely acting like herself. But we had an MRI and a shunt series a month ago. I'm almost sure her shunt is ok. The rest of it? I'm not so sure. We've consulted Dr. Google about complications of  Chiari Malformation and allergies and other worst-case scenarios. We've started a bladder wash. And we take her temperature just about every hour. We ask questions about her tummy and her head. She gets irritated by all of the concern. 

But, we just don't know. She's not typically a sick child. For all of the complications of Spina Bifida, she has been a remarkably healthy child over the years. We'll watch. And wait. And trust our instincts. If action needs to be taken. We'll do whatever it takes.

So, Esther-Faith turning five years old wasn't the spectacular celebration we had envisioned. Cake issues. Cancelled parties. Illness. But, Esther-Faith still turned five. She is still our light and joy. She is still Isaac's best friend. And the center of Isaiah's whole world--his hope. Just as I didn't plan on her, no matter how bad my plans go for her, she is still perfect.

All this also comes from the Lord Almighty,

whose plan is wonderful,

whose wisdom is magnificent.

Isaiah 28:29

Waiting excitedly for Kate to come in the house.

Opening presents and playing with Mimi.

Karaoke with Jim.

Tinkerbell ice cream cake.
With her name spelled the right way.

For the better

This is a repost from December 16 at the HennHouse. We've had a long week. It started with some severe problems with the teenager and ended with Esther-Faith's short stay in the hospital.

-----


Five years ago today, we received the diagnosis that would confound and change our lives. For the better.

But I did not have time to contemplate how far I've come from the fear and shock of that day, because we found ourselves back at the hospital--just 11 months to the day after the illness that would rock my world and kick start 2010. And five years to the day from when her Spina Bifida and hydrocephalus were diagnosed.

As it turns out, Esther-Faith's ventricles look good. Her shunt does not seem to be malfunctioning or failing. She is simply sick.

What joy I had to discover that she had a typical illness.

What ache I felt knowing that today could have gone so differently.

What blessing I felt to have my family and friends and even other SB moms and their families lifting my daughter in prayer and thinking about us throughout the day.

What pain I had remembering the day we found out that days like today would be our life.

What happiness I had walking into Esther-Faith's hospital room to see her eyes light at the sight of me.

What joy I find in the relationship my kids have with each other.

How hot the tears that came quickly and easily--and stayed all day--today.

What frustration with my own emotions.

What comfort in sitting around with each other reading the same books over and over again.

What tenacity in being able to make any room our living room.

What peace in the snow that falls on our cheeks even as we make our way to the emergency room.

What comfort in sharing our fear and knowing that you all stand with us and hold us in your hearts.

What surprise in discovering how strong we really are.

What bravery in a tiny, red-headed package.

What spirit in her cries.

What maturity in the way she talks to the doctors.

What simplicity in her hug.

What pain to walk away from the hospital where she is sleeping.

What delight it will be tomorrow when I see her again.

I am so blessed to have been given Esther-Faith. For whatever time and whatever reason, I am happy that she is my daughter. Do I wish away the Spina Bifida? Only if it will make her life easier. But I wouldn't change a thing about her. She is exactly who she is--and I love everything about her. Even the Spina Bifida and all of its complications. Even the ADHD and all of its extra energy. Even the fear and all of its side effects. Even the sassiness and all of its challenges.

What happened today changed my life.

What happened 11 months ago today changed my life.

What happened five years ago today changed my life.

All of it--for the better.

by Karin.
from the HennHouse.