Sunday, September 12, 2010

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.


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)


Ashley's Mom said...

My son had a cesostomy about 6 weeks ago, and it has been a real blessing. Of all the things that we have had to address due to his spina bifida, this procedure has been one of the easiest, and one with a lot of benefits.

They are easily reversed, but for my son, he is thrilled to have had this done. It has really improved his quality of life.

Colleen said...

Wow, she did so great taking the cables and H off her braces! Yay!

Summers Family said...

Great job Esther Faith! Sounds like a super productive clinic day. Sorry about some of the worrisome news. We will keep you all in our prayers as you face to possible challenges and decisions ahead.

Gretchen said...

Hey.... question on EF.. is she shunted or did she have hydro? For YEARS my son was treated for ADHD (very unsucessfully!), and recently they stoped treating for ADHD and started treating for hydro related issues, (even though his hydro reversed itself before birth) and man has it made a difference... just food for thought!

We have clinic Friday, and this is the first one in YEARS that has me worried....

The Hysell Family said...

New to the blog sight...just had to comment that my son Hunter loves Nick as well. Our last clinic, he went to Nick and would not come back to me. Crazy!! Of course we had been there for 4 hours and Nick took Hunter for a walk...thanks for posting your experience.

Logan Rojas said...

Keep pressing on. That is the way to go. I totally admire your persistence, despite all those challenges and strains that your kid has faced. The strength she's shown all this time is really inspiring. That should be enough for you to indeed keep going, no matter what people say. All the best to you!

Logan Rojas @ Focus On Kids Pediatrics