Getting Wheels and Tests

Two things we learned about our daughter today:

1. She can sit alone with a health professional in the same room for more than 4 hours and still enjoy herself.
2. She can hop onto a wheelchair for the first time and navigate it around like a pro.

Adria amazed us with both of these accomplishments.

Today was a long day that started with us leaving our home just after 6 a.m. to drop Johanna off with Granny then travel the 1.5+ hours in rush hour traffic to A.I. duPont Hospital in Wilmington.

A peak at the upcoming expansion of AI duPont Hospital for Children.

Our visit was unlike any that we've had before at the hospital. To be honest, we weren't really sure what to expect.

Adria was to receive a Neuropsychology Test... as if we knew what that was.

Adria gets seated in the chair where she would spend 4+ hours today playing games and
answering questions related to IQ, reading skills, math and comprehension

We soon found out. While Adria went into one room to "play games" a.k.a. get tested, Adrian and I went into another room to talk with a doctor. She had a kind-hearted nature and explained that these tests look at learning and behavior in children with potential brain development issues. Ironically, she primarily works with children who have seizures and/or spina bifida.

The tests are generally performed during three critical times in a child's development:

1. Pre-Kindergarten
2. 4th or 5th Grade
3. Entering High School

The time with this new doctor was very informative as she gave us insight on what we might expect with Adria's development over her school years and how children in the spina bifida "population" tend to perform in certain areas.

For instance, these children tend to keep their IQ and intellect level growing throughout life, but as school becomes more demanding they often struggle with reading comprehension, attention processing, and abstract reasoning. (Of course, lots of kids can struggle with those!)

Adria leans in to give Mommy a kiss during a break in her testing.

We found it somewhat amusing that the doctor cautioned us to be aware that Adria's sweet, out-going personality may cause teachers to assume that she's performing well, when in fact she might be struggling educationally. Adria is a very bright girl, as they found out during the testing, but we still need to be aware of possible challenge areas.

Our conversation covered a variety of topics, including a review of our family's history over the past few years and areas of possible stress for Adria. As we brought to light some of those difficult times, including Adrian's struggle with seizures and the negative impact of his medications, it was hard to keep cool.

Now that life is coming into a better balance for us, we don't dwell on the harder times. But when we relive them through a conversation with an understanding and sympathetic listener, it feels like it all happened just yesterday... That is not all bad, as there is healing in acknowledging the struggle and recognizing the road to recovery.

After wiping a few tears away and finishing the conversation, Adrian and I were handed a series of questionaires to answer. It felt like we were taking the SAT of parenting as we answered hundreds of questions about Adria and her development. 

An example of one of the 7 forms we had to fill out - Don't you think it looks like the SAT?

Finally, after four long hours with a short lunch break in between, Adria completed her testing and we finished filling out our forms.

Now for the Wheelchair Clinic:

At our recent visit with Adria's orthopaedic doctors, they recommended that it's time for her to get fitted for a wheelchair. At first I almost balked at the idea...she's a great "ambulator" as they say. She walks well with her leg braces and fairly well without them! She's totally fine. Right?

Mostly. We still use a double stroller anywhere that we need to cover long distances - the zoo, state fair, museums, boardwalk, amusement parks, etc. She walks exceptionally well, considering her spina bifida diagnosis, but she still tires much faster than other children her age.

We do not want her to become dependent on a wheelchair, but for emergency purposes and unique situations like those above, it could be very beneficial for her and us.

When we first entered the clinic, and they pulled out a chair for her to try, she was not impressed.

However, after we gave the teddy bear a spin, she wanted a turn. Within minutes she was expertly pushing the wheels and rolling down the hallway! She even figured out how to turn quickly. We were rather impressed and quickly realized how this could be helpful at times.

Adria's "Chicky" was the first one to try out a wheelchair (Barbie sized)

I thought this wheelchair bicycle looked pretty fun!

Daddy considers the first wheelchair option...not loving it.

This one looks much better. Teddy Bear gets the first ride.

Soon, Adria warms up to the idea and tries it along with them.

Hmmm, this isn't so bad.

Watch her go! Once she started, she didn't want to stop.

So we put in an order for a wheelchair...

There are tons of details that go along with the ordering process, but the most important was the COLOR. Adria struggled between Fuschia and Candy Purple, but in the end...Surprise, Fuschia won!

She had to get measured for the proper fit

A Fuchsia wheelchair is on the way...

Finally our interesting day at the hospital was over around 4 p.m. - many hours after our 8:30 a.m. arrival.

As we pulled away in the pouring rain and joined the masses in their evening commute home, my main thought was... boy am I glad I don't have to deal with this traffic everyday anymore! (For those who don't know, I worked in Wilmington for 3 years back in the day.)

We'll be back again in a few weeks to review Adria's test results and then again in a couple months to pick up her new set of wheels!