Yesterday was as expected. Completely draining. I knew it would be. I ran ten miles the night before because I knew I would not be able to get my run in yesterday. BLOG JUMP HERE : )
Gary cried when we turned onto 405. Gary cried when we turn into Children's parking lot. He went on and on how he didn't want to talk or get a shot. Like a broken record he repeated that over and over again. How he didn't want to talk to anyone.
We started out at the dermatologist. We "talked" *smiles* about what treatment we were going to use for the molluscum. There is the standard "freezing" off but its too uncomfortable. We are going to try a medication they use for adult gential warts. ************I stare blankly and instantly think, I am so not picking up that prescription***************. Of course Children's Pharmacy doesn't fill the medication. He also added another tummy protector. I guess they have had success with it having an effect on the molluscum. I was surprised rheumatology gave the ok on it since he is already on a tummy protector. Putting him on two at the same time. They explained it works differently then the other does but I was concerned it interfering with his JDM meds. But we got the A-ok. So who wants to pick up that medicine for me? No worries, I will just have the love of my life pick it up. He doesn't need to know what its for : ) I will inform him afterwards. LOL Pure Evil. I know. "Honey make sure you ask for consult from the pharmacists, this is a new medicine." I will pick it up. I will just use my loud voice. "Before I turn this in I need you to know this is not for ME!" , "Before I pay for this, I need you to know this is not for ME!". This is fun stuff people.
After the dermatologist we headed over to the infusion clinic. They were busy yesterday. It was loud in there. IV went in no problem. Well, the usual. But at least it was a one poke day. The benadryl went in his body a little rough this time. It stung has they ran it in the IV. He acted like it was acid or something. We kept the cool rags on his arm until he zonked out. Our nurse was great. On top of it. Our rheumatologist came down to the infusion center to chat. She asked if we could come up to clinic when we were done. I was surprised how well Gary did with all that. He gets a little uncooperative. Plus its the end of our doctors day so she I am sure has had enough herself. I told her he is still doing good. I am not as happy as I was last month but realize that his body will need to adjust to the tapering. I told her swelling seems to be coming in here and there. One minute he will look fine the next red and swollen. The nurse had made a comment to her that he looked red and rashy when he got to the infusion clinic earlier that morning. I told her the dermatologist nurse also commented on that. "He looks uncomfortable." The doctor explained she thinks that with the disease it has made his blood vessels and capillaries "leaky". She said that she has noticed that with her other JDM kids. Interesting theory. I said, "as oppose to active disease?". She said yes. Hmmmmm. and more hmmmmmm's. I mean anything is possible. I just not sure if I completely agree. Despite a little rash, his labs are holding steady. She paused and looked at me. I looked at her. "Feel like being brave." I told her, "only if you are". So we are continuing the great taper. I gulp this time. For the next two weeks we will go 1ml then 1/2 ml then back 1 ml. If all goes well, after that two weeks we will go to 1 mL every other day. Plug my nose, here goes the cold water. Jump in.
Just in case you forgot what calcinosis, it is calcium deposits. Here is a link to a recent a report that I barely understand but its fun to try. HERE She felt the area's I had mentioned I thought I felt a little something. Right above his hip and across his chest. She stated she was pretty certain that is was indeed calcinosis. If you were to tell me that he would develop calcinosis 6 months ago, I would have freaked out. But this whole process has taken me to a different place. He can have calcinosis. That's fine. As long as it stays where its at and goes away on its own then I am fine with that. Oh yeah, one more condition, it doesn't hurt him. It makes sense though. Reports say that calcinosis can occur as the bodies reaction to damage or previously inflammed tissue or muscle. We use to lift Gary by placing our arm across his chest, instead of lifting him up under his arms because that was damaging the skin under there. Plus the reflex muscles to bring his body with him when you lifted him was gone so it really propelled that damage. Placing our arm or hand across his chest was damaging that tissue as well. As long as those calcium deposits stay where they are at.
At this Point
This morning Gary has been making frequent potty trips. Complaining of not feeling well. Then eats a peanut butter and jelly sandwich. Three year olds. Unstoppable. We are off to try and school shop. May need to wait to make sure he is up to it.