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

Well, clinic was a little of what we expected. And a little of the unexpected.

The renal ultrasound took an exceptionally long time. The radiology technician spent a lot of time on the left kidney. With each pass of the wand over her back, my panic started to build. I tried to get Tim's attention, but he was busy entertaining Esther-Faith and trying to read the ultrasound himself. Which he doesn't know how to do.

By the time the ultrasound was done, my nerves were undone. I couldn't wait to get to clinic and talk to the urology nurse. We were shown a room right away. But we didn't see urology first.

We saw the physiatrist. She checked Esther-Faith's HKAFOs, walker, gait, and hips. We asked about crutches. We asked about her wheelchair. We asked about her braces. We asked if we could try the HKAFOs without the H. Could we try just KAFOs? She was reticent. Reserved. Cautious. Which is kinda how we like our doctors.

While chatting about her dogs with Esther-Faith (she knows how to get our girl to relax!), she helped her out of her braces. She pulled and twisted and checked and double-checked. She didn't think Esther-Faith could do without the H, but she was willing to let us give it a try.

We chatted some more. About her grandkids. And her dogs. And Esther-Faith's social and emotional development. She met Esther-Faith's Nana and Bailey. They talked about books.

As it turns out, the more we work with these doctors, and the more they get to know our daughter and our family, the more we feel like part of a team.

She conferred with the wheelchair folks about our wheelchair questions. They came in. We talked. About wheelchairs. And other stuff. They watched her navigate. And they met Nana and Bailey. They answered our questions about wheelchairs. And options. And insurance.

They left with the wheelchair and Nick came in.

Oh, does Esther-Faith LOVE Nick. Nick is who casts, builds, and adjusts her braces. He had talked to the Physiatrist, and they agreed to remove the twister cables and waistband.

Excitement started to fill the room. Excitement and anxiety. Once they were off, I started to worry that she wouldn't be able to do it. That her legs had become so accustomed to the twister cables that she would trip and fall.

And she almost did.

But after a few trips up and down the hallway, she seemed to get the hang of it. Sure she needed to be reminded to keep her feet straight. And to slow down for a while... until she was used to it. But once the waistband and twister cables were off, she didn't want to take the KAFOs off!

We talked to Nick for a while. About his job and his daughter and soccer.

And then the urology nurse came in... I felt my heart start to beat faster. I was nervous about the ultrasound. But she said Esther-Faith's bladder and kidneys are fine. FINE. Good even. That we're doing a good job with the cathing and teaching her to cath. That she's doing a good job learning. That Esther-Faith probably won't need the mitrofanoff surgery if she can learn to cath herself successfully.

She answered all of our questions about the cecostomy. All of them. She walked us through the procedure. The benefits. The drawbacks. The ups and downs. She dispelled the myths and gave us the straight answers. Even if they were hard to hear.

During this time, Esther-Faith managed to leave the room and go to the nurses station where she charmed the doctors, nurses, and other professionals for a while. She scored seven princess stickers in the process.

Then we met with the nurse practitioner. She checked Esther-Faith all over. And even though she was coughing and had a stuffy nose, Esther-Faith seems to be doing very well.

The nurse also reviewed the cecostomy with us. Giving us some anecdotal success stories, and making sure we knew it was easily reversed. Then she asked Esther-Faith if she was interested. Esther-Faith is not.

Sigh.

Too soon, I suppose.

And then... the unexpected. She talked to us about school and a neuro-psych exam. Because Esther-Faith is giving all indications of having an attention deficit.

Oh, boy.

Not that we haven't been down this road. Both boys have ADHD. Both boys take medication. Both boys see a psychiatrist and a psychologist. But the news stung. I was so hoping to avoid anything else that would make life difficult for Esther-Faith.

Deep breaths.

We're still a year away from the exam and the answer. But knowing what I know about attention deficits, I've got to admit, she's giving some pretty strong indications.

But like I said, Esther-Faith is Esther-Faith. Nothing any doctor or professional or psychologist says now or in the future will change how much we love our girl. So, I will take what we've learned, keep teaching her to cath, keep talking to her about a cecostomy, keep doing homework every night, keep paying attention to what she says and does...

And we'll keep on keeping on. One day at a time.



By Karin (from the HennHouse)

Postponed

Well....

I've had an interesting week/weekend.

We did the Race for the Cure on Saturday (with more than 50,000 people!!!).

My middle child turned 10. (PARTY!!)

We entertained company. (Fun!)

Both of my sons were suspended from school. (Within hours of each other. At different schools. Good grief.)

Two soccer games. (One professional. One with 10-year-olds.)

And in Spina Bifida news, my four-year-old daughter cathed herself on the potty for the first time. (HUGE. WONDERFUL. NEWS.)

So, I haven't quite had time to put together a post about doctors. (Sorry!)

Stay tuned next week (or maybe sooner if Kari has an opening) for a post about doctors...

Walking the 5K.

Tim and Isaiah ran it with the competitive group.

Then they walked it with us.

Crossing the finish line on Daddy's shoulders.