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.

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)