A FULL Day at the Children's Hospital

"Mommy, I need to see the foot doctor."

We've been hearing this line from Adria for over a month now. Really, ever since she had to go two weeks without her leg braces.

This week she finally had the chance to see her foot doctor. And her brain doctor. And her bladder doctor. And her developmental doctor. And her specialized physical therapist.

A couple times a year we travel north to Wilmington's Alfred I. duPont Hospital for Children for the Spinal Dysfunction Clinic (SDC). Because spina bifida impacts so many different functions of the body, it works best to schedule a time when the various specialists can take turns talking with you during the same visit.

Adria saying hi to the fishies while waiting for her kidney ultrasound and urodynamics study.
Don't you love her princess high-top sneakers?

On the one hand this is great because it saves us multiple trips throughout the year, and the hospital is 1.5 hours away. On the other hand, it makes for a very long day and repeating ourselves several times as we talk with each specialist. 

Last Tuesday we were in the hospital from 9:30 a.m. to 3:45 p.m. for these visits. Adria held up pretty well, but as soon as we got in the van to head home, she clonked out.

You might be wondering, how it went for her and why it took all day? Let me break it down for you.

But first of all, her stats. She weighed in at 45 lbs. and stands 39.5 in. tall - this puts her in the 60th percentile for weight and the 3rd percentile for height. My little cutie!
I love that she can stand against the wall now to get her height measurement, for years she was not able to do that on her own.

This was her schedule for the day, however it ended up being much different as appointments went long and were moved all around.

• Dr. Campbell - Pediatric Nuerosurgeon: He and his physician's assistant monitor the amount of fluid on Adria's brain (often through MRIs and Cat Scans) as spina bifida often causes Hydrocephalus. Adria had this and at six months old had a new procedure called Endoscopic Third Ventriculostomy to lessen the build-up of fluid on her brain. He gave us great encouragement, saying that children who've had the procedure done with no complications for more than 5 years likely never will have issues! He reminded us to stay on the look out for signs of tethered spinal cord, as this can cause issues when children go through growth spurts.

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  The Physican's Assistant for Dr. Campbell takes a look at Adria's legs.

• Dr. Conner - Orthopeadic Doctor: He checks her legs, hips and joints and provides prescriptions for her leg braces a.k.a. AFOs (Ankle Foot Orthotics). He took a close look at her legs and feet and tried to ask Adria where her pain came from. She would just giggle and say, "I don't know." We told him how sometimes she amazes us with how far she can walk and other times she complains about her feet being tired and wants us to carry her. To be honest, he did not have much great insight or advice, but he did notice that her right foot is turning out more.

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  Adria's has weak ankles and her feet are pronated, turned outward. The other day she really wanted to try on sister's fancy heals...it didn't go so well. Her ankles could not support her and fell in, she was pretty disappointed.

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  A little disappointed that she can't wear heels like mommy and sissy :(

• Rehabilitation Medicine: This team of specialists provides overall support with all her physical challenges including weight management and bowel control programs. They were pleased to hear about her success in pre-school and gave advice to prepare for kindergarten. Their biggest recommendation for the day was to consider getting Adria fitted for a WHEELCHAIR... My initial reaction is to say NO, since Adria is getting around so well on her own. However, it would only be used in unique situations like outings that required extensive walking or emergencies at school. Apparently, it can take over six months between getting fitted for a wheelchair and actually getting one, so they suggested we start the process in the near future...

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  Rehab Medicine and Physical therapist put on Adria's braces after watching her walk around without them. Adria showed off "running" up and down the halls once her braces were back on.

• Physical Therapist: She was pleased to hear that since our last visit, Adria has learned to take a few stair steps up and down WITHOUT HOLDING ONTO ANYTHING! This shows incredible balance for her, as she used to need us to hold onto both of our hands to get up and down steps. The therapist did recommend getting a few adjustments done to her braces (DAFOs).

• Kidney and Bladder Ultrasound: About once a year, Adria gets an ultrasound of her kidneys and bladder to check on whether she's having any reflux or other urinary issues. It's really strange to see a little girl getting jelly on her belly much like pregnant mothers get an ultrasound to see a baby. Fortunately, mommy's iPhone made that an easy experience for Adria.
• Urodynamics Study: This is a somewhat invasive study that would probably require many kids to be sedated, but Adria is accustomed to catheters. The urology technician actually places catheters in her and sensors on her to test bladder pressure and capacity. It takes about 45 minutes for the procedure, so watching Tinkerbell on TV made this tolerable for Adria.
• Dr. Figueroa - Pediatric Urologist: Finally, after all the testing we saw her urologist and his assistant Susan. Fortunately, Dr. Figueroa said that the results of her tests looked good and her bladder seems to be growing appropriately (some kids require bladder enlargement surgery). We did discuss how we are again struggling to keep Adria's diapers clear of stool and this is a concern as we prepare to put her in full day kindergarten. Susan talked with us about a new bowel program that the hospital has recently started using called Peristeen. They have 10 families using it with good success, so that's the next thing we'll be looking into!

All in all it was a good visit with encouraging news on Adria's progress. We did leave with two major things to consider and investigate - getting Adria fitted for a wheelchair and changing her bowel routine. It's an ever learning, ever changing experience with spina bifida, but Adria truly is a blessed and healthy girl!