Calcinosis

Gary is doing well since his Rituxan doses and steroid increase. The only thing that is bothersome is the calcium. It seems to be on the move again in my opinion. I am noticing more and they are increasing in size. I noticed on Monday night. Every couple nights we sit down before or after bathing (preferably after ; ) ). This time I called my husband in the room to see what he thought. It seems bigger, more solid in his thighs. Around his hip they were protruding enough you could see them without having to touch. The calcium around his elbows is doing just that. It seems to be trying to make a ring around his whole joint. He has a whole gaggle of deposits around tail bone. Now when he bends down you can see them quite well as to before you couldn't. Energy, TOP NOTCH. Pretty normal for a four year old I would say. Steroids have increased his appetite at first but he seems to have leveled out a little with that. I notice very little weakness. His voice is still hoarse, but has stayed the same. I thought he may have had a mild case of thrush again but I will continue to be vigilant with that. Both him and his sister had small small cold sores in the sides of their mouths. But no one was feeling ill, eating, peeing all the rest just fine. The calcium in his thighs is stopping me from holding him on my hip. If he straddles my hip, it presses on the calcium and I get an ouch. Great news is he stopped complaining about his ankle pain and knee pain. His toes are still crossing but we will keep an eye on it. Speaking of I's! Gary's vision is great. No signs of toxic effects from all the drugs. Check back in six months.
 : )  So while the calcium still continues at least his cuticles are looking better.  We need to give the Rituxan and the increase of drugs time to work.  The only aspect of that I don't like is we still are in search of what it is that will shut this off.  They say if the calcium is increasing, then process of his disease is still going.  I suppose keeping him healthy with toxic drugs of course until it decides to stop?  Everyday I have questions.  Everyday not even the doctors know.

We have been staying so busy. Gary and I started a job! Our family is now in the pasta business. We have done to local markets. The pasta is beautiful! My awesome cousin makes it. He started his company last year and asked us to join him. Gary is amazing when we go. We have long days but its only on Tuesdays and Thursdays. I am so thankful I can bring him along. I still need to make sure I am focusing on Gary and his treatment, but since he is with me that is easy to do. We have a tent we sit under so the sun is not to bad. Just need to make sure we are staying protected. It is difficult on a single income so we are going to do what we can : ). Summer vacation is coming so we will have more helpers.

Here is our pasta stand.
 18th Ave. Pasta Company

Still training for the full Rock n Roll Marathon coming up quickly on June 25th.  Still training for the STP coming up quickly on July 9th.  I did really well fundraising this week.  Thank you to everyone who donated so far! Almost half way there!   Here is the video we posted on our facebook in honor of donations.

http://www.facebook.com/video/video.php?v=10150193765533058