Tuesday, October 26, 2010

Our EB Family

Zack is taking the day off today so it is my honor to tell you about the incredible group of people that have come into our lives because of EB.

When Zack was first given to us, we were given the name of a young lady who lived in our state who has Zack's form of Eb. I called them and the next day they drove 4 hours with a car full of supplies. I was sooo nervous to meet Elizabeth, I did not know what to expect from someone who was living with EB. Well, there are not really words to describe how I felt when I opened the door and I was greeted by a beautiful and inteligent lady. I was blown away at her humor and strength. Her parents accompanied her and they were equally wonderful. It has been our experiance that EB families are made of some pretty tough stuff and we have LOVED getting to know them over the years. Every 2 years we go to a patient care conference sponsored by www.debra.org. We love these families and it is so fun to be able to spend a week with people truly understand what life with EB is like. I have so much respect for the families and caregivers that we have met. After spending years doing foster care and meeting parents who struggle to provide the bare minimum of care for their kids it is refreshing to see families who are giving 110% to make sure that their EB kids have a great life. EB caregivers are so quick to share any helpful tip or insight,so little information was available from the medical world, much of what we do to care for Zack has come from other EB caregivers. Often a cry for needed supplies will go out over the online support groups, almost instantly offers to help out come from all over. EB is not a cheep disorder to deal with, yet I am constantly amazed at how giving this community is. I am working on getting links to all of our EB friends to the side bar. If you have a minute, stop by and visit a few of them.

The next group in our EB family is the great staff of the Denver Childrens Hospital EB clinic. We love what these doctors have done is establishing a routine of care that makes hospital and clinic trips completely EB friendly. We will be visiting them next week for clinic and the week after for surgery. They are totally worth the 8 hour drive.

We go through more than our fair share of wound care supplies and National Rehab makes that monster such an easy one to tackle. Bill Corman in an angel on this earth, along with the other great members of the NR team. We know what life without them is like and we hope that they will be around forever.

No comments: