Klippel-Trenaunay Syndrome

I often forget the people aren't aware of the exact condition that Adam has, so as part of this blog I am going to give a synopsis of what Adam has. If you have any questions about KT syndrome don't be afraid to ask. I am always willing to help educate people on my little boy.

In general KT is best defined as the following:

The K-T syndrome is a rare congenital malformation that may include the following:
Port-wine stain or "birthmark" (cutaneous capillary malformations)
Soft tissue and bony hypertrophy (excessive growth of the soft tissue and /or bones)
Venous malformations & lymphatic abnormalities Complications may include bleeding, cellulitis, venous thrombosis, or pulmonary embolism. Associated abnormalities in other systems, such as gigantism of toes, hand and feet anomalies, lymphedema, or involvement of the abdominal and pelvic organs may also occur.
K-T usually is limited to one limb, but may occur in multiple limbs and/or head or trunk area. Internal organs may be involved. Each case of K-T is unique and may exhibit the above characteristics to differing degrees.

Now within the world of KT Adam is slightly different. He is affected in all of his limbs except for his left arm. His port wine stain is over 3/4 of his torso and apparently the syndrome has affected the development of his teeth. We are not sure of his internal organs, we like to believe they are fine, but we won't know until he is about age 4 when he can have an MRI performed. We go to the University of MN twice a year to meet with specialists. He has to wear special orthopedic shoes, and sock are a challenge to find. We are blessed that The Syndrome has not seemed to affect him cognitively. The severity of his case is classified as about average, with the potential to worsen if not managed.

So, this has been my full time job over the last 2 years of my life. How do I manage? A strong faith, a good family, and an the advice of Aunt Karla who told me, "You are his only advocate"