Yikes! Pressure Sores from AFO Braces

I know it's not just me. It really is always something when you have kids, isn't it?!

This evening, for example, as I was getting the girls ready for their evening bath, and as I sat on the floor with Taylor, helping her take off her little braces, I noticed it - a pressure sore on the bony part of the inside of her ankle. And seeing that sore, well, I got very sad. Yikes! A pressure sore.

Taylor has never had one in the 2-1/2 years that she has been wearing her AFO braces. What I know about pressure sores from braces is that once you have one, that particular area of skin becomes weakened and especially prone to getting them again even after the sores have completely healed. And, if there's one thing that a mom of a child with cerebral palsy gets bragging rights about - it's that your kid has never had pressure sores from braces. Oh, well, so much for bragging rights on that...Taylor got her first pressure sore from her AFOs today.

When I saw it, I asked Taylor if the spot was hurting her...Taylor told me that it "wasn't an owie" and it didn't seem to hurt her. (That made me feel a little bit better). After Taylor's bath, I treated the sore with Neosporin, covered it with a band-aid, gave her little ankle a kiss and Taylor an extra big hug and told her that her ankle would be "all better" real soon.

Until the pressure sore goes away, I will NOT be putting Taylor's braces on at all so that the sore on her ankle can fully heal. I also will be contacting the orthotist who crafted Taylor's braces first thing tomorrow when their office opens to let the orthotist know that we need to get her braces checked again for proper fitting and make any adjustments we might need to make as soon as possible!

Perhaps Taylor's just going through a growth spurt and her one foot/ankle is no longer fitting that one brace the way that it was first designed; well, whatever the reason, it's got to be corrected and right away. It absolutely broke my heart tonight to see that Taylor had developed a pressure sore on her ankle from her AFOs, and I just hope that her orthotist can fix whatever needs to be fixed on Taylor's brace so that she will be able to wear her braces again without further issue.

Coming To Terms with Big News & Learning to Find New Hope

During the past year, we have come to face some new challenges and struggles. In June 2007, we learned that one of our daughters did not escape the statistics that we were warned of by the doctors during my difficult pregnancy. More than 50,000 children are diagnosed with cerebral palsy every year. Our daughter Taylor was one of them. Taylor is a bright, exuberant little girl, who happens to have a mild form of cerebral palsy (known as diplegia) which has affected her ability to walk.

After the initial numbness of the news of Taylor’s diagnosis wore off, we began to actively seek out physical therapists who could help Taylor. Our search led us to an awesome pediatric therapy clinic in Northern California.

Beginning with Taylor’s very first physical therapy session, she has worked hard day after day, both at home and at the therapy clinic. In just a few short weeks after beginning therapy, Taylor began to use her leg muscles in a way that she never had before, and for the first time since the initial diagnosis of cerebral palsy, as her mom, I felt a sense of optimism and renewed hope.

Taylor at Therapy Clinic with Her Physical Therapist, Doing Some Warm-up Leg Stretches

About 3 months into physical therapy, Taylor was fitted with a pair of pediatric leg braces, and almost immediately started achieving new things. Wahoo! Taylor started standing! Taylor’s physical therapist pushed her to her physical limits, stretching and strengthening Taylor’s leg muscles every week.

Taylor Getting Fitted for Her First Pair of Braces

A few more months of rigorous physical therapy along with continued practice wearing the braces and Taylor FINALLY started walking! YAY!

Taylor at Therapy Clinic, Working on Her Form When Walking

Practice Makes Perfect! Taylor Continuing to Perfect Her Form When Walking

As we have celebrated these first milestones for Taylor this year, we are ever-mindful of the significant role that Taylor’s therapist has played in Taylor’s life in making these accomplishments happen.

Words simply can’t express the happiness, love and pride we have felt the latter part of this year as our Taylor has continued walking. It sounds like such a simple thing to do, but for Taylor it’s not and it hasn’t been.

Today, Taylor enjoys a newfound confidence in her ability to walk. She now needs very little assistance from us in order to walk and only occasionally needs assistance by holding our hands. Taylor will continue to see her physical therapist for several years to come and the outlook for Taylor’s future remains bright and promising. The best part — Taylor will eventually not need to wear the leg braces at all and will one day even be able to run with her peers on the playground.

Playing with A Friend at the Park

- Photo: Taylor (L), Samantha (R) -

What I have learned from this experience having a child with special needs is that you come to appreciate the lives of children impacted by a disability and the families struggling to manage their child’s special need. When it is your child’s life who is affected by a disability, it becomes your life too.

I have also learned that children with special needs are real fighters! Our Taylor has been fighting like crazy ever since the moment she was conceived and came into the world. Taylor’s struggle to overcome her disability and to walk has taught me the extraordinary resiliency that even the smallest of children possess and I’ve come to realize that life is truly precious, something worth fighting for and that as a parent, you’ve got to do all that you can to make it count.

On the flip side, some of the experiences I’ve had first-hand as a mom having a child with special needs has taught me that at times it can be an isolating experience. Our family has had to stretch ourselves in many ways in order for us to deal with our child’s disability. My husband and I, who are both fairly private people, have had to learn to be more open and learn to talk more freely about our feelings as well as our daily struggles raising a child with special needs. Through this experience, I have also met a great number of other parents and families who are facing their own set of challenges in raising a child with special needs and have enjoyed the almost instant bond and understanding that comes with identifying with one another through our shared set of difficult experiences. These are the parents and friends who I have found truly understand the disappointments, frustrations and roller-coaster ride of emotions that come with raising a child with special needs. These are the folks who have helped make this un-chartered journey of raising a child with special needs more bearable because I’ve come to learn that while these other families are trying to manage and cope with their own challenges, they’ve also helped me to see that the difficult and overwhelming roles and responsibilities we must play in our child’s life also yield some HUGE benefits for us as parents and the impact that we have upon our child is likewise HUGELY rewarding!