Bianca's Adventures: EB Awareness Week 2011 ~ Bee’s Hands & Her Capabilities Beyond Our Expectations

Bianca ~ Aug 2011 ~ Almost 9

As many of you know Bianca has a form of EB that is called Recessive Dystrophic Epidermolysis Bullosa (her sub-type was classified as Hallopeau-Siemens – verdict is still out on that one). We’ve gone through several manifestations that come along with her diagnosis. So many things were told to us that we would be dealing with today. By the Grace of God, Jesus Christ and the Holy Spirit we have been able to somewhat live a very active and normally modified life! She plays like any 9 year old ~ swims, dances, sings, draws, skips, hops, colors, plays – you name it she’ll try it at least once!

One of these manifestations that we’ve known since day one that is inevitable is the continuous scarring, constricting and webbing of her hands. While wrapping them periodically and placing special bandages and primary dressing we have been able to somewhat “delay” the webbing process. A known fact is that her dominating hand – the right one – seems to be affected much more than her left hand. Her fingers have curled in and we’re having issues with her flexibility. However, through the years and the advice of many others out there that have been dealing with EB (specifically her type) we have come to understand that there are a few simple steps that can help the process of gaining some additional movement in the fingers that have curled in. One is after a LONG bath stretch those fingers out one-by-one for a few minutes every night. Between the warm waters and the soaking the skin loosens up a bit. Then there’s the wrapping in between the webbing space to create some form of suspension bandaging – overnight you can see the separation (and sometimes a bit irritated) that is created with the wrappings. This has helped in the webbing department – again not to completely do away with it but as most EB moms know delay it. Another “by chance” that I ran into through the years was the use of an all natural “sugar-scrub” that has helped in gently exfoliating the dry skin followed by the amazing Mary Kay Extra Emollient Night Cream. This nightly routine (scrub is used only 3Xs per week) has helped Bee’s hands look smoother and more toned than ever. All by pure luck – a mother’s sixth sense!

With all that goes on with Bianca’s hands I can tell you right now that she draws BEAUTIFULLY – her imagination is so vividly active that it allows her to use her hands in the same way that you and I can – no matter the restrictions that have been put upon them. She handles the remote like a true master – just like daddy. She has done dishes – only when she’s trying to be extra good to earn things and can wash her face. She can hold a rag in the tub while she takes care of getting herself all nice and clean. She can catch a ball and has a mean right-handed throw! She can grab her toothbrush to brush her teeth. Put on her school uniform in the morning and slip on her PJs at night! She is an amazing little girl regardless of all that has been placed upon her – I believe it has made her into this tough little spark!

Until next time…