Wednesday, June 1, 2011


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.

View photo.JPG in slide show
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.

1 comment:

  1. I can't see the video :(
    I am glad that Gary is getting relief and that his ankles are not hurting him as bad and that the nail beds are looking better. That is a good sign of the meds calming the disease down. I am sorry you have found more calcium deposits hopefully with these new meds they will calm down and disappear as well. It is always a struggle and in the back of your mind mine too that all these drugs and their side effects all the toxins etc...what in the world are they doing but we have to have faith that they are doing more good than harm. I am having such a hard time with my disease. If you pop over you can read what I heard on Thursday it is alot and I have been in tears over it. My Dr.'s are arguing and not on the same page and one Dr. wants to drop my steroids and expose my whole disease what in the world and JHU is livid about it so it is just a holy living mess and I am stuck between it all and in the meantime my flare isn't doing very good. So Gary looses his voice too? The called mine retnoid fixation. I lost it once for three months. I have noticed I am getting horse again.

    Hang in there pretty girl you are a great mommy and thanks for getting donations and running marathons for those of us who can't