Well I am completely exhausted. Simon and us have had a rough weekend. His skin is worse than I have ever seen it and it is so painful for him. I put all the meds to use last night and he still kept getting up and crying. His redness is calming down but he has blisters the size of quarters all over his arms and legs and his lips are pretty well scabbed. His mouth has sores inside too so hes not too happy to eat or drink. It is heartbreaking and scary all at the same time. EM can be a very serious skin condition especially if its associated with other diseases. Since not alot is known about NEMO noone knows if this is from that or what? We are still wondering about the IVIG even though they say they have never seen it to cause this and its acutally suppose to be something they prescribe to help with it. So they are thinking the pentamadine which he gets to prevent pneunomia but he gets that at the beginning of the month and doesn't break out. The other day with piggybacked the IVIG and pentamadine and a day later had this. So please continue to pray that Simons skin clears, quicker and we don't have another episode of this in a long time. We get the infusions once a month so I am very worried. He has been throwing up and not eating as well so its sucked all around. On a good note he did spark up some happiness when we all decided to get into the girls sleeping bags and have potato sak races today. At least he knows fun when he sees it. Please pray for Simon, he needs your prayers. We will check vntrs on the 10th and then not again for 3 months so pray they are strong and steady. God Bless Tracy and David