Jeremy's battle with a Mitochondrial Disorder called MINGE. Update June 12th, 2006 I see that my mother posted a note in Jeremy's guestbook, as Jeremy did too and said mom I think you better update, so here it goes.. LOL! Busy busy, to put it plain and simple. School is out for Joey, so it has been friends over, he going there, birthday parties and so forth, then jeremy to his friends, pet shopping, and planning trips for the summer. So I decided since I have a few moments this morning after meds I would update jerms page! He is doing wonderful, no fevers, but real nausous.< (sp). We have stopped the ampo, and now we are back on caspofungin, after me drawing cultures three days in a row, we had 7 days no growth on all of them, so we wanted to go back to that one beings it is less toxic and works well with the candida albicans. So we are pushing right along, we are going to try and get into see pulmunologist and urology sometime late this month or early July, Jerm is becoming more and more short of breath if he is off his oxygen for too long, and as for the accidents with urinary problems. He is not looking forward to going to see Dr. Blythe, jeremy said he made him feel uncomfortable, but I think that alot of it is because He had to mess with jerms privates. And keep in mind this was probably 2.5 years ago. Jeremy just didn't like him, he is very shy when it comes to that sort of stuff. Which I don't blame him. But I talked to Jeremy and asked him what he wanted to do, because he is the one with the problems, and said that he wants to go becuase these issues are getting more and more irritating to him, especially when he sits and all of a sudden he said he has little drips coming out on there own. We are doing pretty well though otherwise, we are now doing lasix everyday, and that seems to help with urinating issues as well. Has also helped with the ton of extra fluid that he has, he is not looking as puffy! In my opinion, he does look great, maybe it is just me, because I am mom! Who knows, but Dad thinks he looks awsome too. Don't get me wrong we are still dealing with tiredness, and all of the other symptoms, but other than that he is pushing right along. We had him outside playing croquet this past weekend, and of course guess who won all 4 games?? ME.. whoo hoo.. Jeremy kept saying this is not fair! Jeremy is like, okay mom, we go fishing you catch all the fish, we play croquet you win, what is next?? hmmmmmm I said let me think about that one. We are thinking of taking a trip here soon, there is a special up in Breckenridge, which is a two night stay in a hotel, and an all day rafting trip on that saturday with lunch, so we are thinking of taking that trip, not sure if we will let Jeremy go on the rafting trip, just because it is an all day ordeal, and not sure if jerm can handle that, but Grandma sharon said that she would stay back at the hotel and her and jeremy can shop at all the shops that they have there. Plus it is higher up in the mountains and beautiful up there, so we will see. Well, Today is blood draw day as well, so I had better quit rambling, and get off here. Everyone have a good week and we will try to udate more, I told Jeremy that maybe I should put him in charge of this..hee hee. Love to all, the ~Willis family~