Sunday, May 24, 2009

Just an update...

Gary is doing ok. We still seem to be fighting that fact that not much has changed as far as his symptoms improving. He gets miserable after minutes in the sun. We went and bought him his own outdoor sunless habitat. It is a 10 x 10 tent style gazebo that creates space in the backyard for him to play. He seems to enjoy. We just need to get our backyard into shape. It is grassed but a lot holes and bumps which are murder on his poor little tender hips. He is developing tiny lesions on his knuckles, cuticles, and one tiny on his eyelid. I am curious to see what they develop into. Hopefully no infection develops. I think we see his rheumatology doctor this week. If not I plan on calling Tuesday and asking for a check in appointment. His appearance changes everyday in my opinion. He looks puffier and puffier. Uncle Bill taught him to say that he has a baby in his tummy. I will ask him, "what is that?" (pointing to his tummy). He cocks his head to the side, winces and says, "dat me baby" as he pats it. Thanks Uncle Bill. The evening before bed is when Gary gets most miserable. Last night was his second methotraxate shot. He was already crying and I suddenly got it my mind that it was time. My parents were here. I told him I am getting ready. Rob held him, put a blanket over him with one leg out. It worked well. I walked in, everyone distracting him, popped the needle in, pushed the medicine, counted and walked out. He had a knot on his thigh afterwards but didn't seem to be in any pain from the shot. He has a small bruise but its either a small bruise or insert needle nice and slow. There didn't seem to be any immediate side effects from the methotraxate like tiredness or mouth sores like I have read. So we shall see.

I joined an online support group for dermatomysitis. Some of the member have responded to my post. I asked what is he feeling. What do I need to look for that is good and bad. The disease is unpredictable and each patient is different. It is the unknown that naws at me.

We got a call yesterday that Roberts mom was in the hospital. She has a history of gastrointestinal trouble like Robert had surgery for two years ago. This time they say was different. At two oclock in the morning the fire fighters had to come in thru the second window because she could not come to the door. The doctors suspect that she had a series of mini strokes called TIA which is a warning sign for a big stroke. We didn't go down to Portland but stayed in contact. If she wanted us there Rob would have gone and will go. She is going home today though. I would appreciate prayers for her. We feel helpless with her living almost five hours away. Rob will have to go if she needs us. Gary can't make a trip like that right now. Uuuuggghhhh. Poor MIL.

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