Monday, February 20, 2012

Thank You for Your Help!

Hello Everyone,
I wanted to send you an update on our fundraising project that will send us to the EB conference.  Our goal is $2620 and your donations have brought in $1,940.  Thank you so much.   We have made our reservations and are excited about the opportunity to attend.  If anyone has questions about our trip, please feel free to ask;  we are still accepting donations. They can be sent through PayPal or mailed to our home address.

AJ continues to do well considering his inability to eat.  He continues to express his desire to get this "fixed".  I called the doctor today and told her that I will be bugging her about getting his esophageal dilatation scheduled.  This has been much too long of a wait.

We do have an appointment this week with the dermatologist. It is his major six month appointment where he will be seen without any bandages and they will photograph all of his wounds.  He doesn't mind because no one really touches his skin.  We give him a bath in the early morning and then he puts on clothing that looks like a newborns gown.  His legs and feet zip into it so that he does not tear his skin.  It is very soft and looks like a big bag that is zipped up the front.  At the end of the appointment we bandage him right back up in the office.

Later in the day AJ will have a bone density scan.  Kids with EB can have poor bone density and we hope to use the results of this scan to give us a baseline with which we can observe any future changes should he need treatment.

Thank you again for all of your prayer and financial support.

Barbara and AJ

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