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.

Clinic day

It's been a couple of weeks... but a lot happened at clinic.

UROLOGY. We gave the urology nurse our summary. She said we're doing everything right (if she only knew!), and she quizzed Esther-Faith about cathing. Because our use of bladder washes has kept Esther-Faith off antibiotics for UTIs, she prescribed some more. Esther-Faith will be assessed for Ditropan. She'll have a renal ultrasound, VCUG, and urodynamics test in mid-April. Boom. Boom. Boom. One right after the other. It should be a fun day. And I TOTALLY see a trip to Build-a-Bear in our future.

ORTHOTICS. Esther-Faith is GROWING. Her KAFOs had to be "grown" by an inch. This will be the last growth for this set of KAFOs--then we'll need new ones. And I feel like we just got these ones. While we were there, Nick (SUPER orthotics guy--he totally needs a cape or something) took a look at some of the things that were concerning us. He adjusted, and tweaked, and bent, and twisted until he got it right. The appointment was long, but I tell you what, I like Nick MORE AND MORE every time we need something done for her orthotics.

WHEELED AMBULATION. Esther-Faith's wheelchair ALSO had to be "grown" at clinic. The footrest was moved down and the seat moved back. All while we were there at clinic!

BOWEL MANAGEMENT. We talked again about the cecostomy. Again, after last year, I seriously hesitate to VOLUNTEER my child for another surgery. And really, if we decided to do it, we might have our first all-out rebellion on our hands. We'll see.

NEURO-PSYCHOLOGY. The exam will be scheduled. Although, nearly every practitioner who met our daughter--from developmental pediatricians to clinic nurses to the social worker to other doctors--all agreed that the exam was really a formality. It is PRETTY CLEAR that our daughter struggles with attention, hyperactivity, impulse control, and staying in her own space. All things we adore about her. All things that could make kindergarten a little difficult next year.

OCCUPATIONAL THERAPY. Esther-Faith will start to work with an occupational therapist to help her get stronger in her "trunk" (Cassie: apparently Ab RipperX doesn't count!) so that she can continue to develop her cathing skills. She nearly has the routine down, but there are two things that she still struggles with. Getting her pants down and getting the catheter in. The catheter part will come with time, patience, and practice. The balance to get her pants down is where the OT will help. We hope. Cause I really can't even wrap my brain around TWO possible surgeries.

PHYSIATRY. I took my laptop with the video of Esther-Faith taking tiny, tiny steps by herself to show the physiatrist. I wanted her to know that not only did she learn to walk with crutches, but also she learned to walk WITHOUT them. We've been using borrowed crutches. The physiatrist prescribed Esther-Faith her own. It was a small victory, but a victory none-the-less.

SOCIAL WORK. We met our third social worker in five years. I liked her, but really, I'm going to try not to get attached. She asked us lots of questions about Esther-Faith, our family, etc... We talked about our family dynamics, the boys, etc... Coincidentally, Isaac had just been kicked off the bus that week, and Isaiah was getting into his own brand of trouble at his school, so the social worker had another social worker friend give us a call. These sorts of things always make us chuckle. By the time the call came, Isaac had earned his way back onto the bus and Isaiah was in all sorts of different kinds of trouble. The issues of that morning were nearly forgotten.

ORTHOPEDICS. Prior to clinic, Esther-Faith had some hip x-rays done. They show a little bit of something (the word escapes me now), but nothing serious--just something to monitor and follow. And she has tibial torsion. I don't know for sure what that means, but her left foot turns in when she walks and apparently the turn is in her tibia. In "typically developing" children, the condition almost always corrects itself. In Esther-Faith, (as with most things with her) we'll watch and wait. The doctor said it *could* mean surgery, but not for many years.

I'm sure I'm forgetting something.

Esther-Faith danced with Nick in the hallway.

She hid from Tim when he wanted her to come back to the room.

While we were talking to doctors, she introduced herself to the other patients IN THEIR ROOMS (see Neuro-Psychology note about personal space).

She charmed all the medical professionals--even when she was being sassy.

She answered her own questions.

She took off with one of the wheelchair guys' tools.

She asked me if she was being brave enough for a surprise.

She took the light from the developmental pediatrician and examined HER ears.

She acted like the sassy, little princess that she is.
Even when she wasn't getting her own way.
Which if I'm honest, is pretty much ALL of clinic.

Incentive

It's amazing what a little incentive can do...

I have book called "365 smart after-school activities" that we try to use a couple of times a week for ideas and activities. Today, the activity we selected was aerobic dancing. The note on the page reads: Aerobic activity significantly increases the oxygen supply to the heart, lungs, and all other body parts.

As it turns out, increased oxygen supply is what we needed.

Well, that, and the promise of a puppy.

We put on some music. The kids danced while I cooked dinner. I joined in occasionally. We skipped the slow songs. Isaiah and Esther-Faith were grooving. He was doing what he could to keep her off his toes. She was doing what she could to stomp on his toes. At one point he had to run out of the room, and he left her standing in the middle of the room.

We do this--leave her standing. Especially when there is music on. She loves to dance. She can stand for a while in one spot if we help her set her feet. He was gone a little longer than she liked. She kept dancing. I knelt by the piano. Isaiah came back into the room and stood by me as she took tiny, tiny steps. An inch or less at a time. Kind of dragging her left foot. She covered in a couple of minutes what I do in one step. But those tiny steps. Those inches. Those victories.

No walker.

No crunches.

No anything.

Tiny, tiny steps in my direction. Until she reached me and fell into my arms.

I sobbed. Happy, wrenching sobs. Isaiah's eyes weren't dry. He ran upstairs to get Tim as she wiped the tears from my face and asked, "Why are you crying, Mama?" She brushed my hair back from my face and caught my tears on her small finger. "Because I'm so happy, Esther-Faith!" I answered. "Do you know what you just did?!"

"I walked without my crunches, Mama," she answered nonchalantly.

Tim and Isaiah came back into the room. I reset her where she started. She stood there, wiggled her booty a little, and took tiny, tiny steps again. Right to me.

I have dreamed of this day for years.

Years.

After many tears. Lots of jubilation. Burning the barley risotto. Forgetting napkins on the table. And a whole lot more celebration. We sat down to dinner.

After dinner, she did it again. She walked two more times without her crunches. This time, we had the camera out. And each time she reached me, she reminded Tim that he promised her a puppy once she walked without her crunches.

And he did. About three weeks ago when she walked from the kitchen to the table a few times with one crutch to help Isaiah set the table, Tim told her that if she learned to walk without crutches, he would get her a puppy.

She loves puppies.

We texted Kate. And Mimi. And about half-a-dozen others. Then, she called Kate--completely glossing over the walking part going straight to the puppy part. Later she talked to Mimi. Same story. A little bit about walking. A whole lot about a white puppy with black spots named "Pony."

After talking to Kate, Tim slipped out and picked up an ice cream cake that said, "Baby Steps! Congratulations, Esther-Faith!" We had ice cream cake.

And despite our best efforts to sleep, Tim and I sit here in awe of our little girl. What she did today was not supposed to happen. But we can't shake the feeling that she isn't done. That she will keep doing all the things that she wasn't supposed to do.

A little bit at a time.

Tiny, tiny steps.

Sometimes, inches at a time.

And sometimes, it doesn't hurt to have an incentive.

Walker-Free Wednesday

It started with "Walker-Free Wednesday." Then, "Crunch-Only Thursday." And, "Where's My Walker Friday."

Eventually, she had transitioned to using only her crutches. Sure, she walks slow. She needs to be reminded to line her feet up. She falls more. And she's not as confident. But she's getting there. I don't even take the walker into preschool or daycare anymore. I leave it in the truck in case the teachers want it, but she goes with just her forearm crutches these days.

It's a big deal.

Until it isn't.

Today, as I walked into the daycare classroom just before lunch to help her with her catheter, I noticed that she was a little weepy. The teacher explained that she had a rough morning. She seemed tired and unwilling to share. Which was drama. And then, coming back from the muscle room, she fell. She was turning in her crutches and she fell.

Yes, she was physically hurt.

But when I asked her where it hurt the most, she pointed to her chest. That spot where we put our hands when we pledge allegiance. The spot where she places her hand when she gasps at a particularly sparkly something-or-other.

Over her heart.

I felt the lump in my throat. Because I knew what was coming next.

"So, your feelings were hurt?"

"Yes," she replied. "My friends laughed at me."

I didn't say anything. I couldn't think of anything to say. As she whimpered at the memory of it, I fought the tears of the future of it. We went about the business of cathing.

"Esther-Faith," I started. "How do you feel when your friends laugh at you when you're being silly?"

"I feel silly," she replied.

"Do you think your friends thought you were being silly?"

"Maybe," she answered. "But I was hurt. And the laughing hurt my heart more."

We finished. Washed our hands. Had a nice long hug. And went back into the classroom. We weren't there a full minute before two more "friends" started badgering her about wearing a pull-up.

"Why do you still wear a pull-up, Esther-Faith," one of them questioned.

"Yeah. I don't have to wear a pull-up anymore," the other echoed.

She looked at me. Her eyes begging me to take her out of the classroom. I knelt down in front of her. She leaned her head on my shoulder, and I whispered. "What do you want to tell your friends?" She shrugged. I held her delicate face in my hands and forced her to make eye contact. "Esther-Faith," I said. "You can tell your friends that you will wear a pull-up until your body is ready to not need it anymore." She stared into my eyes. "And that's ok, sweet girl." She wrapped her arms around my neck, buried her face in my hair, and slowly sighed.

It does not get easier.

For all the things she does that make me proud, I am sad that I can't protect her from the things that hurt. Hurting and healing make us all stronger. But these hurts... these pains... the aches in my soul for the things that I would change for my daughter if I could...

She is AMAZING.

She wasn't "supposed" to walk at all. And she's on the brink of walking with just one crutch.

She is AMAZING.

She was "supposed" to be "significantly developmentally delayed." But she did almost a dozen pages of self-assigned homework this evening. And she's on the brink of reading.

She is AMAZING.

She wasn't "supposed" to be here at all. But she brings out the best in all of us. Her brothers. Her dad. Me. She is our glue.

She is amazing.

On "Walker-Free Wednesday" and ALL the other days.

She is amazing.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because 

I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place,

when I was woven together in the depths of the earth.

Your eyes saw my unformed body;

all the days ordained for me were written in your book

before one of them came to be.

Psalm 139:12-16

Dinner

1 large butternut squash, cubed
2 medium onions, cubed
6 garlic cloves, smashed
2 tbsp vegetable oil
Unlimited CUTE

We made low-calorie butternut squash soup for dinner in an effort to help Daddy as he battles back from five broken bones in his foot and almost three months of recovery.

In order to "help," Esther-Faith had to get her braces on and get into the learning tower by herself.

I will admit, I was reduced to tears as I watched her don her braces, push the learning tower to the island, and climb into it.

All by herself.

I know that by now, nothing she does should surprise me, but I'm amazed by her every day.

Prepping the veggies for roasting.

She misses her real Nana something fierce.
So, she insisted that the Nana that
never leaves her side help with the
soup preparations.

Crunches

Sometimes, we can all use a little help...

And as it turns out, any crunches will do...

I'm still trying to catch up with housework, appointments, cooking, Christmas preparations, etc... as one of the grownups at the HennHouse is down for the count. Two weeks ago Tim broke four metatarsals (one of them shattered) and his big toe during a soccer game. Last week, he had surgery. The surgery was supposed to last 45 minutes. It lasted two hours and 15 minutes instead. He has a job that requires driving. Per doctor's orders, he isn't to drive for six weeks. Unfortunately he has already exhausted his sick leave due to Esther-Faith's hospitalization (and recovery) earlier this year. 

It might be a light Christmas at the HennHouse.

BUT....

As Esther-Faith watches her daddy use his crunches, she is much more willing to try her crunches. She watches him get up, and she tries it. She watches him navigate small spaces, and she is more confident in her ability to get where she needs to go. 

In fact, when he first got his crunches, she insisted on showing him how to use them. 

It's adorable. 

And magnificent.

And hopeful.

Even if having Tim down for the count is stressful, it may be worth it if she gains the confidence she needs to continue developing her crunch skills.

by Karin. 

(from the HennHouse)

Progress... sort of

A couple of weeks ago, I posted about Esther-Faith (finally) starting to take slow, tentative steps with forearm crutches.

And last week, about the irony of her braces breaking a couple of days later--after we had already ordered a new pair of HKAFOs.

And last week, we picked up those new braces. The waistband and twister cables can be removed and put on as needed (we'll put them on when she gets fatigued). The AFOs are actually pink this time. Even the velcro is pink.

Our girl was happy.

The orthotics specialist is a perfectionist. Which is exactly how I like the person who is building the equipment that helps my daughter walk. We spent hours putting the braces on her, watching her walk, taking them off, making adjustments, and over and over again. And despite missing her nap, she was good-natured about it.

For a couple of days, we let her use the walker. Then, on the way to preschool one day, she decided she just wanted the crutches--just for that day. She isn't very good at the forearm crutches yet, so I was a little hesitant. But her PT was going to be there as well as lots of PT, OT, and other students.

Apparently, she did well.

And she did it again on Sunday.... until about nap time. Then, it was like we all took the quickest train available to meltdown city. We had to bribe her with candy and cartoons to get her to walk to the car.

Yes. I bribed her. I'm not (that) ashamed.

Yesterday, she showed off her forearm crutch skills for Papa in the nursing home. Today, she used the walker. I'm not sure what will happen tomorrow.

As with just about every bit of progress she makes, we'll take it one day at a time. I recall a time when she hated the walker. And the wheelchair. But she made progress. And when I step back from this situation, I can see that she will again.

This day belongs to the LORD!

Let's celebrate and be glad today.

Psalm 118:24

Irony

You know how something happens to your car the month after you pay it off? Or you take the lasagna out of the oven just as the husband walks through the door to take you to dinner?

A couple of weeks ago, Esther-Faith started taking tentative steps with forearm crutches instead of her walker while the PT followed holding on to her waist. We really never thought she would get there. She HATED those forearm crutches for the longest time.

A couple of days later, we ordered her new KAFOs. They are coming with a removable waistband and twister cables. We'll put those on when she gets tired, but mostly, she'll use the KAFOs.

And then, she started walking with the crutches by herself. We were ECSTATIC! It was just a few steps at a time. Maybe across the room. And the walking was painfully slow. We bribed her.

And then last Sunday, she woke up and announced that she no longer needed her walker. She really wanted the "I'm walking with only crutches" dress that we bought, and she decided that Sunday was the day.

So, she walked with just the forearm crutches all day on Sunday. All over church. At home. Outside. Inside. All over. Sure, it was slow, but she was doing it--and it was her idea.

And that Sunday afternoon at her brother's soccer game, her braces broke. Literally broke in half.

And for the last week and a half, she's been rolling only.

Many times under duress. She isn't a big fan of rolling only. She wants her braces back. We pick the new ones up tomorrow.

I hope she doesn't forget how much she wanted to use those crutches!!


by Karin.
 (from the HennHouse)