Monday, May 25, 2009

More and more

My husband had the weekend off which was so nice. Not that it makes a difference to Gary as far as his umbilical cord being re-attached with all this. He doesn't even like to be out of my sight most the time. Always wanting me to hold him. Holding a thirty-two pounder does wonders for my back. By the end of the day I am tired myself from all the up and down lifting. We struggled with the sun this weekend but are confident that we will figure something out. Right now we are on a mission for a sand and water table for his sunless habitat. I might have already mentioned that.

Today Gary's symptoms were the same as they have always been. Like I mentioned previously, I am going to be checking in with the nurse and doctors tomorrow. Nothing has worsened, nothing has improved either. His rash is the same, and physically cannot do stairs, and complains a lot with diaper changes because of hip tenderness. Showers are torture. I know you don't want to read about poo but for documenting purposes, Sunday he had a bad bought with diarehha and then more today. I held off on giving him his softner to see if it subsides. Gary crys quit a bit and is overall cranky. It is very pleasant when the rare times he does get playful and happy. It does not last long however.

I actually found another journal online done by a Dad who's daughter was diagnosed with JDM in 1998 and 1999. He did a very good job updating it daily about her symptoms, what the doctors always had to say, and he even did her levels as well as which meds she was on, how much ect,. I am going to try and email him to see how she is doing. She was nine then which makes her, 2,3,4,5, awwww you figure it out. I can't even remember if I washed my hair or not. BTW, the daughter is 19 now. I want to journal like he does but I get to emotional and make it about me. LOL I try not too.

The kids seem to be doing much better with it all. Elexis is starting to snap out of it a bit. I was really worried about her there for awhile. Almost as much as I was worried about Gary. But she seems to be getting back to her same old sassy self. Uncle Bill and Auntie Alyssa took McGuire and his buddies camping this weekend. It was a promised birthday trip for him. I am sure he had a blast. Unfortunately McGuire passed a unwanted gift back to his Auntie while on the trip, the stomach flu. They had to stay an extra day because she is still recovering and was unable to travel. :0 Poor Auntie.

In case nobody knows, my mother is the best cook in the world. Her dinners always make everything better. I am hoping it is not that I am just a lousy cook making her food taste just that much better. If that is the case, well, fiddle dee dee.

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