Steps Forward...and Back

Adria giggled loudly in halls of A.I. duPont Hospital for Children last Tuesday. She was watching a video of herself from over three years ago, where she was walking along in her braces wearing just a diaper.

"Hahaha, I just love my cute, chubby self!" she giggled, much to the amusement of her orthopedic doctor, physical therapists and her parents.

The video was filmed in the Gait Lab of the hospital, where they film children "ambulating" who have an abnormal gait. Adria's first video was made when she was three years old and had just learned to walk without her walker! It was really cute and touching to watch that video again.

Adria walking without her braces in the Gait Lab last Tuesday

NEW LEG BRACES = GOOD AND BAD

The doctors were looking at the video to compare how she's walking now. She recently got a new pair of leg braces (Ankle Foot Orthotics) that we were so pleased with at first. They are stronger than her last pair, which we had several issues with - they cracked because of her active lifestyle and she often complained of pain in her legs, However, Adria is struggling more with balance and running in her new leg braces.

Her physical therapist from school especially noted the difference. Adria had been making good progress in ascending and descending a few steps without holding onto the rail (yeah!), but now she has regressed and is struggling with some skills and balance.

The doctors at AI believe that the setbacks are due to Adria adjusting to the difference with the new braces and that in time she will regain her former abilities and continue to grow.  They think she looks great!

Adria's orthopedic doctor and physician's assistant check out her hips and legs.

They did suggest that it could be beneficial for us to get her some "Walk-Easy" crutches to use when walking longer distances, such as hikes through the woods. It's another good option for her to try and stay as active as possible, then just using her wheelchair for big outings like the Zoo or amusement parks. So, we'll look into those crutches more this summer.

Adria did get to go back down to the Gait Lab with the yellow "road" and land of Oz mural and take a new video. She rocked it, walking and running with and without her braces! It's just amazing to watch her progress.

UPCOMING SURGERY

We had another doctor to see on Tuesday as well. The pediatric plastic surgeon.

This doctor is new to us, as Adria has developed a surprising, new issue in recent months. She basically has bed sore/wound on her bottom and the stubborn thing will not heal!

Since February, I've been applying prescribed ointments and dressings daily. It's stayed clean and uninfected, but it simply will not close up and heal on its own.

The reason she got this in the first place is somewhat mystifying, but it has to do with the fact that she has limited sensation on her bottom. When at school, she would sit in a hard chair for prolonged periods of time without adjusting her position and a sore developed.

This would not happen to the average person because we would feel pain or discomfort from too much pressure in the same spot and simply shift in our seat. But Adria does not have some of those nerve endings because that lower part of her spinal cord never formed properly in my womb.

It's one of the impacts of Spina Bifida that we did not account for, but ever since this happened, she's had a nice soft cushion on her seat at school and her wonderful teachers make sure she gets frequent breaks.

But last week the doctor said it's time to take a more proactive approach in the healing of this wound. It needs to be closed surgically...

I did appreciate that the plastic surgeon used very vague language when talking to us about this with Adria in the room. Adria gets easily upset about needles, pain, and likely would have freaked out if she really knew what's going to happen next Friday. It will be an out-patient surgery but will require anesthesia.

After the surgery, Adria is NOT supposed to SIT for a WEEK!

She can walk some but will be restricted to lying on her stomach and side most of the time to allow for complete healing. She is totally going to miss school that week, but they did not want us to wait until school lets out - the surgery schedule is already full in June.

Yesterday, I got a called from the hospital reviewing Adria's health history and asking tons of questions in preparation for next Friday's surgery. The lady even recommended a video that the hospital has made to help parents and children know what to expect. It's really helpful actually. Here it is:





This will be the only the third surgery that Adria has had. I say ONLY because many children with Spina Bifida have had more than a dozen surgeries by her age! But Adria was only six months old for her last surgery...which was a much more intense procedure. It was literally surgery on her Brain. She was only the 8th child in the U.S. to have this operation that provided an alternative to the Shunt, commonly used to treat Hydrocephalus. Read about it HERE.

We are believing this upcoming surgery will be a simple procedure and she'll come home with us that same day.

Honestly, I've only explained this whole thing a little bit to Adria. She would be too upset if she knew the full extent of what's going to happen.

SO PLEASE DON'T SAY TOO MUCH TO ADRIA ABOUT THIS SURGERY. Thank you.
Just say an extra prayer for her on May 27.

EXCITING TIMES

You can't keep this girl down, though. She's got a couple of events before the surgery.

This Saturday, Adria's hoping to participate in her second Spelling Bee - she won Third Place in her first one a couple months ago!

And next week she has a Girl Scouts awards program. She joined a Girl Scout troop at her school this year and sold more than 100 boxes of cookies this spring. She's got some great natural sales skills (like her mama :)

Perhaps most exciting is the fact that Adria just started being able to Catheterize herself!! 

This is a huge step in independence for her. She's been afraid to try for so long, but I told her that if she wanted to try any Day Camps this summer she would have to learn to take care of herself. Apparently that was motivating for our social butterfly, and a few weeks ago she did it on her own for the first time! She's been getting more used to it since and is pleased with her new ability.

We are so thankful for Adria and her great progress forward, in spite of her challenges. She sometimes says, "Mom, I wish I wasn't a spina bifida person."  It's tough to hear this and know how to respond, but she's got a great spirit and we pray she'll always keep her sense of determination.

And always keep taking steps forward, even if she has set-backs from time to time.

Mommy feeling blessed with her babies on Mother's Day!